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  • 1. Ahlner Elmqvist, Marianne
    et al.
    Jordhøy, Marit S
    Bjordal, Kristin
    Kaasa, Stein
    Jannert, Magnus
    Health-related quality of life during the last three months2009Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, nr 2, s. 191-198Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Goals of work The aim of the study was to explore the development of functioning impairments and symptom occurrence during the last months of life of advanced cancer patients. Materials and methods Self-reported data from 116 patients who all completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire—Core 30 (EORTC QLQ-C30) at 3, 2 and 1 month before death were analysed. Main results All functioning aspects deteriorated. For physical, cognitive and social function, the most marked changes occurred between 2 and 1 month before death. The proportion reporting serious difficulties with self-care activities increased from 14% to 43%. The most seriously affected activity could not be distinguished from the EORTC QLQ-C30 scores. Levels of fatigue, dyspnoea and appetite loss increased significantly. More than 50% of the patients had severe pain at all assessments, and only a minor number (8%) reported any improvement. Conclusions The findings have implications for the planning of care and indicate that further research is required to improve assessment, treatment and follow-up procedures. Adequate pain treatment seems still to be a challenge. Anorexia, fatigue as well as dyspnoea are all symptoms that need further focus.

  • 2.
    Alfonsson, Sven
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Olsson, Erik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Hursti, Timo
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi.
    Høyer Lundh, Marie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap. Department of Nursing, Metropolitan University College, 2200 Copenhagen N, Denmark.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi.
    Socio-demographic and clinical variables associated with psychological distress one and three years after a breast cancer diagnosis2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 9, s. 4017-4023Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: A large group of women (20-30%) report psychological distress shortly after breast cancer diagnosis, and some experience continued or increased symptoms over time. The aim of this study was to investigate socio-demographic and clinical variables associated with sustained psychological distress in this patient group. METHODS: Women with breast cancer (n=833) completed self-report questionnaires regarding socio-demographic and clinical variables shortly after (T1) and 3years after diagnosis (T2) while data on illness severity were collected from a quality register. The Hospital Anxiety and Depression Scale was used as a measure of psychological distress at both time points. RESULTS: The number of participants who reported elevated levels of anxiety was 231 (28%) at T1 and 231 (28%) at T2 while elevated depressive symptoms was reported by 119 (14%) women at T1 and 92 (11%) at T2. Despite non-significant differences in mean scores over time, 91 (15%) participants reported increased anxiety symptoms and 47 (7%) reported increased depressive symptoms. Poor financial situation, lack of social support, previous psychiatric treatment, and high levels of fatigue were associated with both anxiety and depressive symptoms. Reporting high levels of fatigue was the variable most strongly associated with increased psychological distress over time. CONCLUSION: Most participants reported decreased psychological distress over time, but there were subgroups of women who experienced sustained or increased symptoms of anxiety or depression. Participants with poor financial status, previous psychological problems, or high levels of fatigue may be at increased risk of psychological distress. Such individuals may benefit most from psychosocial interventions.

  • 3. Benedetti, Franzisca Domeisen
    et al.
    Ostgathe, Christoph
    Clark, Jean
    Costantini, Massimo
    Daud, Maria Laura
    Grossenbacher-Gschwend, Barbara
    Latten, Richard
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Peternelj, Andreja
    Schuler, Stefanie
    Tal, Kali
    van der Heide, Agnes
    Eychmueller, Steffen
    International palliative care experts' view on phenomena indicating the last hours and days of life2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 6, s. 1509-1517Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme. The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings. The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80 % expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72 %, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50 % of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other". Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

  • 4.
    Bergkvist, Karin
    et al.
    Sophiahemmet Högskola.
    Winterling, Jeanette
    Johansson, Eva
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Svahn, Britt-Marie
    Remberger, Mats
    Mattsson, Jonas
    Larsen, Joacim
    General health, symptom occurrence, and self-efficacy in adult survivors after allogeneic hematopoietic stem cell transplantation: a cross-sectional comparison between hospital care and home care2015Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 23, nr 5, s. 1273-83Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: Earlier studies have shown that home care during the neutropenic phase after allogeneic hematopoietic stem cell transplantation (allo-HSCT) is medically safe, with positive outcomes. However, there have been few results on long-term outcomes after home care. The aims of this study were to compare general health, symptom occurrence, and self-efficacy in adult survivors who received either home care or hospital care during the early neutropenic phase after allo-HSCT and to investigate whether demographic or medical variables were associated with general health or symptom occurrence in this patient population.

    METHODS: In a cross-sectional survey, 117 patients (hospital care: n = 78; home care: n = 39) rated their general health (SF-36), symptom occurrence (SFID-SCT, HADS), and self-efficacy (GSE) at a median of 5 (1-11) years post-HSCT.

    RESULTS: No differences were found regarding general health, symptom occurrence, or self-efficacy between groups. The majority of patients in both hospital care (77 %) and home care (78 %) rated their general health as "good" with a median of 14 (0-36) current symptoms. Symptoms of fatigue and sexual problems were among the most common. Poor general health was associated with acute graft-versus-host disease (GVHD), low self-efficacy, and cord blood stem cells. A high symptom occurrence was associated with female gender, acute GVHD, and low self-efficacy.

    CONCLUSIONS: No long-term differences in general health and symptom occurrence were observed between home care and hospital care. Thus, home care is an alternative treatment method for patients who for various reasons prefer this treatment option. We therefore encourage other centers to offer home care to patients.

  • 5.
    Bergkvist, Karin
    et al.
    Division of Therapeutic Immunology, Department of Laboratory; Sophiahemmet University, Stockholm.
    Winterling, Jeanette
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm.
    Johansson, Eva
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm; Department of Medicine Solna, Karolinska Institutet, Stockholm.
    Johansson, Unn-Britt
    Sophiahemmet University, Stockholm, Department of Clinical Sciences and Education, Södersjukhuset, Karolinska Institutet, Stockholm.
    Svahn, Britt-Marie
    Center for Allogeneic Stem Cells Transplantation, Karolinska University Hospital Huddinge, Stockholm.
    Remberger, Mats
    Division of Therapeutic Immunology, Department of Laboratory Medicine, Karolinska Institutet, Stockholm; Center for Allogeneic Stem Cells Transplantation, Karolinska University Hospital Huddinge, Stockholm.
    Mattsson, Jonas
    Division of Therapeutic Immunology, Department of Laboratory Medicine, Karolinska Institutet, Stockholm; Center for Allogeneic Stem Cells Transplantation, Karolinska University Hospital Huddinge, Stockholm.
    Larsen, Joacim
    Röda Korsets Högskola. Division of Therapeutic Immunology, Department of Laboratory Medicine, Karolinska Institutet, Stockholm.
    General health, symptom occurrence, and self-efficacy in adult survivors after allogeneic hematopoietic stemcell transplantation: a cross-sectional comparison between hospital care and home care2015Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 23, nr 5, s. 1273-1283Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: Earlier studies have shown that home care during the neutropenic phase after allogeneic hematopoietic stem cell transplantation (allo-HSCT) is medically safe, with positive outcomes. However, there have been few results on long-term outcomes after home care. The aims of this study were to compare general health, symptom occurrence, and self-efficacy in adult survivors who received either home care or hospital care during the early neutropenic phase after allo-HSCT and to investigate whether demographic or medical variables were associated with general health or symptom occurrence in this patient population.

    METHODS: In a cross-sectional survey, 117 patients (hospital care: n = 78; home care: n = 39) rated their general health (SF-36), symptom occurrence (SFID-SCT, HADS), and self-efficacy (GSE) at a median of 5 (1-11) years post-HSCT.

    RESULTS: No differences were found regarding general health, symptom occurrence, or self-efficacy between groups. The majority of patients in both hospital care (77 %) and home care (78 %) rated their general health as "good" with a median of 14 (0-36) current symptoms. Symptoms of fatigue and sexual problems were among the most common. Poor general health was associated with acute graft-versus-host disease (GVHD), low self-efficacy, and cord blood stem cells. A high symptom occurrence was associated with female gender, acute GVHD, and low self-efficacy.

    CONCLUSIONS: No long-term differences in general health and symptom occurrence were observed between home care and hospital care. Thus, home care is an alternative treatment method for patients who for various reasons prefer this treatment option. We therefore encourage other centers to offer home care to patients.

  • 6. Bondesson, Tina
    et al.
    Petersson, Lena-Marie
    Wennman-Larsen, Agneta
    Sophiahemmet Högskola.
    Alexanderson, Kristina
    Kjeldgård, Linnea
    Nilsson, Marie I
    A study to examine the influence of health professionals' advice and support on work capacity and sick leave after breast cancer surgery2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 10, s. 4141-4148Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The aim of this study was to investigate how women, shortly after breast cancer surgery, experienced encounters with, and information from, healthcare professionals regarding work and sick leave and if these experiences were associated with self-reported work capacity and sick leave.

    METHODS: This is a cross-sectional study based on questionnaire data from 605 women who had had breast cancer surgery, aged 20-63 years. Exclusion criteria were known distant metastases, pre surgical therapy, and/or previous breast cancer. Data on age, type of surgery, global health, and work environment were included as covariates in multivariable logistic regression analysis.

    RESULTS: Five percent of the women had not received any advice concerning work or sick leave. Women reporting receiving useful advice or support related to paid work had lower risk of reporting reduced physical or psychological/social work capacity due to the cancer or treatment (OR 0.46 (95 % CI 0.26-0.81) respective OR 0.45 (95 % CI 0.26-0.77)). There were no associations between having received useful advice or support concerning work and being on sick leave. Women encouraged to take sick leave had an OR of 2.17 (95 % CI 1.39-3.37) of being sickness absent. They also to a higher extent had reduced physical and psychological/social work capacity. Women who reported to have been encouraged to work were sickness absent to a lower extent (OR 0.64; 95 % CI 0.41-0.98) and reported higher physical work capacity.

    CONCLUSIONS: Work and sick leave is being discussed during consultations with women with breast cancer and the advice given seems to be in line with the women's subjective work capacity.

  • 7.
    Browall, Maria
    et al.
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Brandberg, Yvonne
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Nasic, Salmir
    Research and Development Centre, Skaraborg Hospital, Skövde, Sweden.
    Rydberg, Per
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Bergh, Jonas
    Radiumhemmet and Cancer Centre Karolinska, Karolinska University Hospital, Stockholm, Sweden.
    Rydén, Andreas
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Xie, Hanjing
    Radiumhemmet and Cancer Centre Karolinska, Karolinska University Hospital, Stockholm, Sweden.
    Eriksson, Irene
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden / Radiumhemmet and Cancer Centre Karolinska, Karolinska University Hospital, Stockholm, Sweden.
    A prospective exploration of symptom burden clusters in women with breast cancer during chemotherapy treatment2017Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, nr 5, s. 1423-1429Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose

    The aim was to prospectively map symptom clusters in patients with stage I–IIIa breast cancer during standard chemotherapy treatment in a randomised study.

    Methods

    Participants completed the Memorial Symptom Assessment Scale (MSAS) at baseline, day 12 after the first and third cycle of FEC 75 or FEC 100, and day 12 after the last cycle of Taxotere. Cut-off values for symptom scores, a mean value based on each individual reporting a symptom including occurrence, frequency, severity and distress for inclusion in analysis, were determined.

    Results

    The symptom burden cluster analysis was conducted in two steps and included symptoms with high frequency and high levels of distress. The factor analysis revealed three symptom clusters; physical, gastro (phys/gastro) and emotional, with core symptoms that remained stable over time. The most prevalent symptoms for the total sample during all cycles were as follows: lack of energy (range between 48 and 90%), feeling sad (48–79%), difficulty sleeping (54–78%), difficulty concentrating (53–74%), worrying (54–74%) and pain (29–67%).

    Conclusion

    In summary, we have prospectively established that symptom clusters remain stable over time with a basis of core symptoms. This knowledge will aid in the development of effective core symptom-focused interventions to minimise symptom burden for patients treated with chemotherapy for breast cancer.

  • 8.
    Browall, Maria
    et al.
    Högskolan i Skövde, Institutionen för hälsa och lärande. Högskolan i Skövde, Forskningsspecialiseringen Hälsa och Lärande. Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Brandberg, Yvonne
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Nasic, Salmir
    Research and Development Centre, Skaraborg Hospital, Skövde, Sweden.
    Rydberg, Per
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Bergh, Jonas
    Radiumhemmet and Cancer Centre Karolinska, Karolinska University Hospital, Stockholm, Sweden.
    Rydén, Andreas
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
    Xie, Hanjing
    Radiumhemmet and Cancer Centre Karolinska, Karolinska University Hospital, Stockholm, Sweden.
    Eriksson, Irene
    Högskolan i Skövde, Institutionen för hälsa och lärande. Högskolan i Skövde, Forskningsspecialiseringen Hälsa och Lärande.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden / Radiumhemmet and Cancer Centre Karolinska, Karolinska University Hospital, Stockholm, Sweden.
    A prospective exploration of symptom burden clusters in women with breast cancer during chemotherapy treatment2017Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, nr 5, s. 1423-1429Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose

    The aim was to prospectively map symptom clusters in patients with stage I–IIIa breast cancer during standard chemotherapy treatment in a randomised study.

    Methods

    Participants completed the Memorial Symptom Assessment Scale (MSAS) at baseline, day 12 after the first and third cycle of FEC 75 or FEC 100, and day 12 after the last cycle of Taxotere. Cut-off values for symptom scores, a mean value based on each individual reporting a symptom including occurrence, frequency, severity and distress for inclusion in analysis, were determined.

    Results

    The symptom burden cluster analysis was conducted in two steps and included symptoms with high frequency and high levels of distress. The factor analysis revealed three symptom clusters; physical, gastro (phys/gastro) and emotional, with core symptoms that remained stable over time. The most prevalent symptoms for the total sample during all cycles were as follows: lack of energy (range between 48 and 90%), feeling sad (48–79%), difficulty sleeping (54–78%), difficulty concentrating (53–74%), worrying (54–74%) and pain (29–67%).

    Conclusion

    In summary, we have prospectively established that symptom clusters remain stable over time with a basis of core symptoms. This knowledge will aid in the development of effective core symptom-focused interventions to minimise symptom burden for patients treated with chemotherapy for breast cancer.

  • 9.
    Bylund Grenklo, Tove
    et al.
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Karolinska Institutet.
    Furst, C. J.
    Lund University.
    Nyberg, T.
    Karolinska Institutet.
    Steineck, G.
    Karolinska Institutet ; The Sahlgrens Academy.
    Kreicbergs, U.
    Ersta Sköndal Univeristy College ; Karolinska Institutet.
    Unresolved grief and its consequences: A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 7, s. 3095-3103Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PurposeThe early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.

    MethodsIn a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. Results Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief. statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. Conclusions Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

  • 10.
    Bylund-Grenklo, Tove
    et al.
    Karolinska institutet; Linnéuniversitetet.
    Furst, C. J.
    Nyberg, T.
    Steineck, G.
    Kreicbergs, U.
    Unresolved grief and its consequences: A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 7, s. 3095-3103Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose The early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer. MethodsIn a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. Results Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief. statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. Conclusions Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

  • 11.
    Bylund-Grenklo, Tove
    et al.
    Karolinska Institutet, Linnéuniversitetet.
    Fürst, C J
    Lunds universitet.
    Nyberg, T
    Karolinska Institutet.
    Steineck, G
    Karolinska Institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Karolinska Institutet.
    Unresolved grief and its consequences: A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier.2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 7, s. 3095-3103Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.

    METHODS: In a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health.

    RESULTS: Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief, statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model.

    CONCLUSIONS: Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

  • 12.
    Carlsson, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Cancer patients seeking information from sources outside the health care system.2000Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 8, nr 6, s. 453-457Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Most of the information patients receive about cancer and its treatment is probably provided by staff in health care, but if patients do not get sufficient information there is a risk that they might rely on nonmedical sources to satisfy their need. The aim of this study was to survey the degree to which patients seek information from sources outside the health care system. All adult cancer patients visiting or being admitted to the Oncology Department on 1 day were asked to complete a questionnaire. In the course of that day, 192 adult patients visited the Oncology Department, and the response rate was 74%. The patients had used an active informationseeking strategy, i.e., had sought information from the following sources, only to a limited degree: the Internet (6%) medical books (37%), narratives (32%) and telephone helplines (10%). A more passive information-seeking strategy was more common; the patients obtained information from television and radio (82%), newspapers (86%), other patients (46%) and friends (55%). There was a significant correlation between educational level and information-seeking from the Internet, medical books and telephone helplines. Persons with a higher level of formal education had used these sources more than people with less education (P~0.05). Younger patients (~60 years) and those with a higher level of formal education had greater access to the Internet (P~0.0001) and read about cancer in the papers to a greater degree than older ones (P~0.05). Younger patients (P~0.05) and women (P~0.01) had used narratives to a greater degree than older patients and men. The main finding of this study was that the patients actively sought information about cancer only to a limited degree, but the majority of patients take an interest when cancer issues are presented in newspapers and magazines, or on radio and television.

  • 13.
    Carlsson, Maria
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet.
    Strang, Peter
    Educational group support with gynaecological cancer and theire families1996Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 4, s. 102-109Artikel i tidskrift (Refereegranskat)
  • 14.
    de Leeuw, Jacqueline
    et al.
    Radboud University Nijmegen Medical Center.
    Larsson, Maria
    Karlstads universitet, Fakulteten för hälsa, natur- och teknikvetenskap (from 2013), Institutionen för hälsovetenskaper.
    Nurse-led follow-up care for cancer patients: what is known and what is needed2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, s. 2643-2649Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Traditionally, cancer patient follow-up has focused on disease surveillance and detecting recurrence. However, an increasing number of patients who have survived cancer acknowledge the importance of cancer rehabilitation issues and the need for more patient-oriented models of care by reporting their unmet physical, emotional, and social needs. Nurse-led follow-up care for cancer patients fulfills this need and has been developing gradually for various cancer diagnoses and prognoses. A growing body of evidence suggests that these services provide high-quality care that is both safe and efficient. Furthermore, patients benefit from the continuity of care and easy access to support for their multitude of needs, provided by such organized care. In this paper, we review the literature published in the past 5 years regarding nurse-led follow-up care for cancer patients in order to provide input and opinion for future research, clinical practice development, and nursing leadership. We pay special attention to head and neck cancer patients, a group that has been largely understudied and hence underreported in the literature. These patients have specific needs with respect to information and education regarding their cancer and potential treatment side-effects as well as a particular need for long-term psychosocial support and practical advice.

  • 15.
    Dielenseger, Pascale
    et al.
    Gustave Roussy, France.
    Börjeson, Sussanne
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Onkologiska kliniken US.
    Vidall, Cheryl
    Alcura UK Ltd, England.
    Young, Annie
    Univ Hosp Coventry and Warwickshire, England.
    Jahn, Patrick
    Univ Hosp Halle Saale, Germany.
    Evaluation of antiemetic practices for prevention of chemotherapy-induced nausea and vomiting (CINV): results of a European oncology nurse survey2019Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 27, nr 11, s. 4099-4106Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Introduction Preventing CINV is possible when guideline-recommended antiemetics are used. Because oncology nurses play a critical role in risk assessment and management of CINV, a survey of European nurses was conducted to evaluate antiemetic practices, assess awareness of and adherence to current guideline recommendations, and explore barriers to adherence. Methods From March 2016 to Feb 2017, 212 oncology nurses in 16 European countries completed a 20-question online survey. Results Respondents had 15-year (median) oncology nursing experience, and most (75%) were able to suggest or prescribe antiemetics. Most (80%) worked in the public not-for-profit hospital setting. Guideline awareness was generally low with nurses most familiar with ASCO (46%) and MASCC/ESMO (40%) guidelines; individual institution guidelines were most commonly used (47%). Key discrepancies between reported antiemetic use and guideline recommendations in the highly emetogenic chemotherapy (HEC) setting were underutilization of the recommended NK(1)RA + 5-HT(3)RA + steroid combination on day 1 (55%) and high use of 5-HT3RAs (50%) on days 2-5 when a steroid (63% use) should be used. Metoclopramide use was high in both HEC and moderately emetogenic settings, with 30% and 50% reporting use on day 1 and days 2-5, respectively. The most common reported barrier to use of guideline-recommended agents was physician preference (40%). The most common challenges in managing CINV were "controlling nausea/vomiting in the delayed phase" (64%) and "reducing the impact of CINV on patients quality-of-life" (61%). Conclusions This survey highlights opportunities to improve utilization of guideline-recommended antiemetics, thereby optimizing prevention of CINV and QoL for patients receiving emetogenic chemotherapy.

  • 16.
    Drott, Jenny
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Starkhammar, Hans
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för kliniska vetenskaper. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Onkologiska kliniken US.
    Kjellgren, Karin
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Berterö, Carina
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    The trajectory of neurotoxic side effects' impact on daily life: a qualitative study2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 8, s. 3455-3461Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE:

    The purpose of this study was to explore the experiences of oxaliplatin-induced neurotoxic side effects among patients with colorectal cancer (CRC) and how these side effects influenced their daily lives over time.

    METHODS:

    To assess neurotoxic side effects, ten patients were repeatedly interviewed. The patients were recruited from two hospitals in south of Sweden, had stage II-III CRC, and had been treated with adjuvant oxaliplatin postoperatively, from November 2013 to October 2015. They had received FOLFOX and XELOX, with a mean total dose of 791 mg oxaliplatin. After completed chemotherapy, at 3, 6, and 12 months into the post-treatment phase, 25 interviews were conducted and thematic analysis was used according to Braun and Clarke.

    RESULTS:

    Oxaliplatin-induced neurotoxicity affects patients in several ways in the long term. Four themes were identified: Expectation of cure, Dubiety, Normalization, and Learn to live with neurotoxicity. The findings of this study describe the trajectory of neurotoxicity and its impact on these patients' life situation. The findings confirmed that neurotoxicity is multi-faceted and that the experience of it changes over time.

    CONCLUSION:

    The desire to survive stimulates adaptations and strategies to manage daily life, and patients learn to live with the neurotoxic side effects. This study provides evidence that these patients need individual attention and support during the trajectory of neurotoxic side effects. Current care provision is inadequate due to a lack of knowledge of the ways in which neurotoxicity impacts the patient's daily life. This study provides insights that could be used to develop a more person-centered care.

  • 17.
    Dunberger, Gail
    et al.
    Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
    Lindquist, Helene
    Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
    Waldenström, Ann-Charlotte
    Department of Gynecological Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Nyberg, Tommy
    Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
    Steineck, Gunnar
    Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden / Division of Clinical Cancer Epidemiology, Department of Oncology, Institute of Clinical Sciences, The Sahlgrenska Academy University of Gothenburg, Gothenburg, Sweden.
    Åvall-Lundqvist, Elisabeth
    Department of Gynecological Oncology, Karolinska University Hospital, Stockholm, Sweden.
    Lower limb lymphedema in gynecological cancer survivors--effect on daily life functioning.2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 11, s. 3063-3070Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: Lower limb lymphedema (LLL) is a common condition after pelvic cancer treatment but few studies have evaluated its effect on the quality of life and its consequences on daily life activities among gynecological cancer survivors.

    METHODS: We identified a cohort of 789 eligible women, treated with pelvic radiotherapy alone or as part of combined treatment of gynecological cancer, from 1991 to 2003 at two departments of gynecological oncology in Sweden. As a preparatory study, we conducted in-depth interviews with gynecological cancer survivors and constructed a study-specific questionnaire which we validated face-to-face. The questionnaire covered physical symptoms originating in the pelvis, demographic, psychological, and quality of life factors. In relation to the lymph system, 19 questions were asked.

    RESULTS: Six hundred sixteen (78 %) gynecological cancer survivors answered the questionnaire and participated in the study. Thirty-six percent (218/606) of the cancer survivors reported LLL. Overall quality of life was significantly lower among cancer survivors with LLL. They were also less satisfied with their sleep, more worried about recurrence of cancer, and more likely to interpret symptoms from the body as recurrence. Cancer survivors reported that LLL kept them from physical activity (45 %) and house work (29 %) and affected their ability to partake in social activities (27 %) or to meet friends (20 %).

    CONCLUSION: Lower limb lymphedema has a negative impact on quality of life among gynecological cancer survivors, affecting sleep and daily life activities, yet only a few seek professional help.

  • 18. Ehrsson, Ylva Tiblom
    et al.
    Hellström, Per M.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Brismar, Kerstin
    Sharp, Lena
    Langius-Eklöf, Ann
    Laurell, Göran
    Explorative study on the predictive value of systematic inflammatory and metabolic markers on weight loss in head and neck cancer patients undergoing radiotherapy2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 11, s. 1385-1391Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose

    This study aimed to explore the predictive value of systematic inflammatory and metabolic markers in head and neck (H&N) cancer patients during radiotherapy (RT).

    Methods

    Twenty-seven patients were evaluated. The protocol included serial blood tests [highly sensitive C-reactive protein (hsCRP), albumin, insulin-like growth factor 1 (IGF-1), IGF binding protein 1 (IGFBP-1) and ghrelin], measurements of body weight and assessment of oral mucositis.

    Results

    The mean nadir of weight loss was observed at the end of RT. At the time of diagnosis, mean hsCRP was 5.2 +/- 1.0 mg/L. HsCRP significantly increased during RT and decreased during the post-RT period. Mean maximum hsCRP was 35.8 +/- 8.5 mg/L, with seven patients reaching >40 mg/L. A numerical decrease of albumin (by 18.2%) and only small changes in IGF-1, IGFBP-1 and ghrelin levels were observed. None of the metabolic parameters was significantly associated with weight loss.

    Conclusions

    HsCRP increased in response to RT for H&N cancer as a sign of irradiation-induced inflammation. Weight loss was not preceded by changes of the metabolic parameters, indicating that assessment of the blood markers used in this study is of little value. Regular body weight measurement and assessment of oral mucositis are feasible, cheap and important procedures to control the metabolic homeostasis during RT.

  • 19.
    Ehrsson, Ylva Tiblom
    et al.
    Department of Clinical Neuroscience, Karolinska Institutet, 171 77 Stockholm, Sweden.
    Hellström, Per M
    Department of Medical Science, Uppsala University Hospital, 751 85 Uppsala, Sweden.
    Brismar, Kerstin
    Department of Molecular Medicine and Surgery, Karolinska Institutet, 171 77 Stockholm, Sweden.
    Sharp, Lena
    Department of Oncology, Karolinska University Hospital, 118 83 Stockholm, Sweden.
    Langius-Eklöf, Ann
    School of Medical and Health Sciences, Örebro University, 701 82 Örebro, Sweden.
    Laurell, Göran
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar.
    Explorative study on the predictive value of systematic inflammatory and metabolic markers on weight loss in head and neck cancer patients undergoing radiotherapy2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 11, s. 1385-1391Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: This study aimed to explore the predictive value of systematic inflammatory and metabolic markers in head and neck (H&N) cancer patients during radiotherapy (RT).

    METHODS: Twenty-seven patients were evaluated. The protocol included serial blood tests [highly sensitive C-reactive protein (hsCRP), albumin, insulin-like growth factor 1 (IGF-1), IGF binding protein 1 (IGFBP-1) and ghrelin], measurements of body weight and assessment of oral mucositis.

    RESULTS: The mean nadir of weight loss was observed at the end of RT. At the time of diagnosis, mean hsCRP was 5.2 ± 1.0 mg/L. HsCRP significantly increased during RT and decreased during the post-RT period. Mean maximum hsCRP was 35.8 ± 8.5 mg/L, with seven patients reaching >40 mg/L. A numerical decrease of albumin (by 18.2%) and only small changes in IGF-1, IGFBP-1 and ghrelin levels were observed. None of the metabolic parameters was significantly associated with weight loss.

    CONCLUSIONS: HsCRP increased in response to RT for H&N cancer as a sign of irradiation-induced inflammation. Weight loss was not preceded by changes of the metabolic parameters, indicating that assessment of the blood markers used in this study is of little value. Regular body weight measurement and assessment of oral mucositis are feasible, cheap and important procedures to control the metabolic homeostasis during RT.

  • 20. Ehrsson, Ylva Tiblom
    et al.
    Langius-Eklöf, Ann
    Laurell, Göran
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar.
    Nutritional surveillance and weight loss in head and neck cancer patients2012Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 20, nr 4, s. 757-765Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This retrospective single-institution cohort study aims to evaluate if therapeutic approach, tumour site, tumour stage, BMI, gender, age and civil status predict body weight loss and to establish the association between weight loss on postoperative infections and mortality. Consecutive patients with head and neck cancer were seen for nutritional control at a nurse-led outpatient clinic and followed-up for 2 years after radiotherapy. Demographic, disease-specific and nutrition data were collected from case records. The primary outcome measure was maximum body weight loss during the whole study period. The nadir of body weight loss was observed 6 months after radiotherapy. In total, 92 patients of 157 (59%) with no evidence of residual tumour after treatment received enteral nutrition. The mean maximum weight loss for patients receiving enteral nutrition and per oral feeding was 13% and 6%, respectively (p < 0.001). Using multivariate analysis, tumour stage (p < 0.001) was the only independent factor of maximum weight loss. Weight loss was not significantly related to risk for postoperative infection. Weight loss is frequently noted among head and neck cancer patients during and after treatment. Weight loss was not found to be associated with postoperative infections and mortality. Nutritional surveillance is important in all patients, but special attention should be given to those on enteral nutrition and those with more advanced disease.

  • 21.
    Enblom, Anna
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Omvårdnad. Linköpings universitet, Hälsouniversitetet. Vårdal Institute, Lund, Sweden; .
    Bergius Axelsson, Beata
    Department of Oncology, Karolinska University Hospital, Stockholm, Sweden.
    Steineck, Gunnar
    Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Gothenburg, Sweden; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden.
    Hammar, Mats
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Obstetrik och gynekologi. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Barn- och kvinnocentrum, Kvinnokliniken i Linköping.
    Börjeson, Sussanne
    Linköpings universitet, Institutionen för medicin och hälsa, Omvårdnad. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Kirurgi- och onkologicentrum.
    One third of patients with radiotherapy-induced nausea consider their antiemetic treatment insufficient2009Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, nr 1, s. 23-32Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: To describe the prevalence of nausea and vomiting during radiotherapy and to compare quality of life, psychological and functional status in patients experiencing or not experiencing nausea.

    Materials and methods: A cross-sectional selection of 368 cancer patients treated with radiotherapy answered a questionnaire (=93% answering rate) regarding nausea, vomiting, actual use of and interest in antiemetic treatment, quality of life and psychological and functional status during the preceding week of radiotherapy. Mean age was 60 years and 66% were women.

    Main results: Nausea was experienced by 39% ( 145) and vomiting by 7% ( 28) of patients in general, by 63% in abdominal or pelvic fields and by 48% in head/neck/brain fields. Abdominal/pelvic field (Relative risk (RR) 2.0), age <= 40 years (RR 1.9) and previous nausea in other situations (RR 1.8) implied an increased risk for nausea. Antiemetics were used by 17% and 78% were interested in or wanted more information about acupuncture treatment against nausea. Of the 145 nauseous patients only 25% felt that antiemetics had helped them and 34% would have liked additional treatment, although the nausea intensity was mild in 72%. The nauseous patients reported lower well-being and quality of life, lower satisfaction with aspects of daily living and more frequent anxiety and depressed mood than the patients without nausea.

    Conclusions: Of all patients undergoing radiotherapy, 39% experienced nausea and one third of them would have liked more treatment against the nausea. This study stresses the importance to identify and adequately treat patients with increased risk for nausea related to radiotherapy.

  • 22.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Skolin, Inger
    Karolinska institutet.
    Mattsson, Elisabet
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?2011Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, nr 5, s. 605-611Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff’s possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients’ needs, are suggested.

  • 23.
    Engvall, Gunn
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Skolin, Inger
    Department of Laboratory Medicine, Section of Clinical Physiology, Karolinska Institutet, Stockholm.
    Mattsson, Elisabet
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Hedström, Mariann
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?2011Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, nr 5, s. 605-611Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff's possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients' needs, are suggested.

  • 24.
    Erichsén, Eva
    et al.
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Hälsa, Aktivitet, Vård (HAV). Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i östra Östergötland, LAH Öst. Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum.
    Milberg, Anna
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum. Region Östergötland, Närsjukvården i östra Östergötland, LAH Öst.
    Jaarsma, Tiny
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Friedrichsen, Maria
    Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum. Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Constipation in specialized palliative care: factors related to constipation when applying different definitions2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 2, s. 691-698Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    CONTEXT:

    For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied.

    OBJECTIVES:

    The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation.

    METHODS:

    Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios.

    RESULTS:

    Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease.

    CONCLUSION:

    There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.

  • 25. Forinder, Ulla
    et al.
    Lindahl Norberg, Annika
    Karolinska institutet, Inst. för kvinnors och barns hälsa.
    "Now we have to cope with the rest of our lives". Existential issues related to parenting a child surviving a brain tumour.2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 5, s. 543-51Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

  • 26. Forinder, Ulla
    et al.
    Lindahl Norberg, Annika
    Karolinska institutet, Inst. för kvinnors och barns hälsa.
    "Now we have to cope with the rest of our lives": Existential issues related to parenting a child surviving a brain tumour2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 5, s. 543-51Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

  • 27.
    Forinder, Ulla
    et al.
    Stockholms universitet, Samhällsvetenskapliga fakulteten, Institutionen för socialt arbete - Socialhögskolan.
    Norberg, Annika Lindahl
    Now we have to cope with the rest of our lives. Existential issues related to parenting a child surviving a brain tumour2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 5, s. 543-551Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of the paper was to explore the existential issues expressed by parents of children who had been treated for brain tumours. A brain tumour in childhood is an event that triggers acute traumatic stress and it has long-term consequences for the child as well as for the parents. Due to advanced treatment techniques, more children survive brain tumours today. However, for most survivors a brain tumour is associated with sequelae and uncertainty about the future. Eleven parents of seven children successfully treated for brain tumours were interviewed in 2006. The semi-structured interviews were conducted by two licensed psychologists. The Inductive Thematic method was used to analyse the data. Consequences of a perceived threat, uncertainty and loss were described in terms of grief and sadness, loneliness, changes in the conditions for parenting, and changed views regarding identity and meaning. A traumatic experience is typically followed by an existential crisis, i.e. a process of restoring the person's assumptive world. As summarized by one parent: ""Now we have to cope with the rest of our lives"". The statement can be seen as a metaphor for the reconstruction of everyday life - a new picture including the child's disease and its sequelae, as well as the uncertainty about what the future might be like. The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

  • 28.
    Forslund, Marina
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi.
    Ottenblad, Anna
    Ginman, Claes
    Johansson, Silvia
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi.
    Johansson, Birgitta
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi.
    Effects of a nutrition intervention on acute and late bowel symptoms and health-related quality of life up to 24 months post radiotherapy in patients with prostate cancer: a multicentre randomised controlled trial.2019Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: Radiotherapy to the prostate gland and pelvic lymph nodes may cause acute and late bowel symptoms and diminish quality of life. The aim was to study the effects of a nutrition intervention on bowel symptoms and health-related quality of life, compared with standard care.

    METHODS: Patients were randomised to a nutrition intervention (n = 92) aiming to replace insoluble fibres with soluble and reduce intake of lactose, or a standard care group (n = 88) who were recommended to maintain their habitual diet. Bowel symptoms, health-related quality of life and intake of fibre and lactose-containing foods were assessed up to 24 months after radiotherapy completion. Multiple linear regression was used to analyse the effects of the nutrition intervention on bowel symptoms during the acute (up to 2 months post radiotherapy) and the late (7 to 24 months post radiotherapy) phase.

    RESULTS: Most symptoms and functioning worsened during the acute phase, and improved during the late phase in both the intervention and standard care groups. The nutrition intervention was associated with less blood in stools (p = 0.047), flatulence (p = 0.014) and increased loss of appetite (p = 0.018) during the acute phase, and more bloated abdomen in the late phase (p = 0.029). However, these associations were clinically trivial or small.

    CONCLUSIONS: The effect of the nutrition intervention related to dietary fibre and lactose on bowel symptoms from pelvic RT was small and inconclusive, although some minor and transient improvements were observed. The results do not support routine nutrition intervention of this type to reduce adverse effects from pelvic radiotherapy.

  • 29.
    Fransson, Per
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Tavelin, Björn
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Widmark, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Reliability and responsiveness of a prostate cancer questionnaire for radiotherapy-induced side effects2001Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 9, nr 3, s. 187-198Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Few self-assessment cancer-specific questionnaires / modules have yet been developed for radiotherapy-induced side effects. The aim of the present study was to test the reliability and responsiveness of a prostate cancer (PC)specific questionnaire. Thirty-one patients with PC graded their urinary and intestinal symptoms and their sexual function on the questionnaire. A doctor and a nurse performed a structured interview and graded the patient's symptoms with the same questions. The procedure was performed at both the start and the end of the treatment. A high concordance regarding symptom detection was seen between the patient, nurse and the doctor. The inter-rater test shows intraclass correlation coefficient (ICC) values above 0.60 in all scales. The internal reliability exceeded the lower limit (Cronbach alpha > 0.70) for all scales. The test-retest gave acceptable reliability for all scales (ICC greater than or equal to 0.60). All scales indicated increased problems during radiotherapy. The questionnaire was proven to be valid for the evaluations of urinary and intestinal problems and for sexual function in PC patients.

  • 30.
    Friedrichsen, Maria
    et al.
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum.
    Hajradinovic, Yvonne
    Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum.
    Jakobsson, Maria
    Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum.
    Milberg, Per
    Linköpings universitet, Institutionen för fysik, kemi och biologi, Biologi. Linköpings universitet, Tekniska fakulteten.
    Milberg, Anna
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i östra Östergötland, Palliativt kompetenscentrum.
    Palliative care consultation team on acute wards-an intervention study with pre-post comparisons2017Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, nr 2, s. 371-380Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    There is little evidence regarding primary healthcare team members perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. This study aimed to study whether a PCCT can influence and change primary healthcare team members perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 years intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.

  • 31. Friedrichsen, Maria J
    et al.
    Strang, Peter M
    Carlsson, Maria E.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Breaking bad news in the transition from curative to palliative cancer care: patient's view of the doctor giving the information.2000Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 8, nr 6, s. 472-478Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Sire subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.

  • 32.
    Frisk, Jessica
    et al.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för kliniska vetenskaper. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken ViN.
    Hammar, Mats
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för kliniska vetenskaper. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Barn- och kvinnocentrum, Kvinnokliniken i Linköping.
    Ingvar, Martin
    Karolinska Institute, Sweden .
    Spetz, Anna-Clara
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för kliniska vetenskaper. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Barn- och kvinnocentrum, Kvinnokliniken i Linköping.
    How long do the effects of acupuncture on hot flashes persist in cancer patients?2014Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 22, nr 5, s. 1409-1415Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Purpose Acupuncture has been suggested as therapy for hot flashes in women with breast cancer and men with prostate cancer. In this systematic review, we sought to evaluate the long-term effects on vasomotor symptoms after the end of a defined treatment period of acupuncture in women with breast cancer and men with prostate cancer. Methods A literature search revealed 222 articles within the field. With defined exclusion criteria, we identified 17 studies. We also used the Jadad quality score and identified seven studies with a score of at least 3. Results Six of seven identified studies qualified for inclusion in an analysis that measured frequency of hot flashes weighted in relation to number of patients (n=172). The average reduction from baseline to end of acupuncture (ranging between 5 and 12 weeks of treatment) showed 43.2 % reduction of hot flashes. At the last follow-up (mean 5.8 months, range 39 months) after the end of therapy, the weighted reduction from baseline was sustained at 45.6 % in the 153 of 172 patients (89 %) who were followed up. Conclusions Data from six prospective analyzed studies indicate at least 3-month effects after the end of acupuncture treatment for flashes in women with breast cancer and men with prostate cancer. However, larger randomized trials with long-term follow-up will be needed to confirm these preliminary findings.

  • 33.
    Frisk, Jessica
    et al.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Obstetrik och gynekologi. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken i Östergötland.
    Källström, Ann-Christine
    Clinical Department of Surgery, Division of Oncology, Helsingborg Hospital, Helsingborg, Sweden.
    Wall, Najme
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Onkologi. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Centrum för kirurgi, ortopedi och cancervård, Onkologiska kliniken US.
    Fredrikson, Mats
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Yrkes- och miljömedicin. Linköpings universitet, Hälsouniversitetet.
    Hammar, Mats
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Obstetrik och gynekologi. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Barn- och kvinnocentrum, Kvinnokliniken i Linköping.
    Acupuncture improves health-related quality-of-life (HRQoL) and sleep in women with breast cancer and hot flushes2012Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 20, nr 4, s. 715-724Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: Evaluate effects of electro-acupuncture (EA) and hormone therapy (HT) on health-related quality-of-life (HRQoL) and sleep in breast cancer survivors with vasomotor symptoms.

    METHODS: Forty-five women, randomized to EA (n = 27) for 12 weeks or HT (n = 18) for 24 months, were followed for up to 2 years. Distress caused by, and numbers of, hot flushes, hours slept and times woken up/night, Psychological and General Well-being Index (PGWB) and Women's Health Questionnaire (WHQ) were registered before and during treatment and at 6, 9, 12, 18 and 24 months after start of treatment.

    RESULTS: After 12 weeks of EA (n = 19), WHQ improved from 0.32 (IQR 0.23-0.53) at baseline to 0.24 (IQR 0.12-0.39; p < 0.001) and PGWB from 78 (IQR 53-89) to 79 (IQR 68-93; p = 0.002). All sleep parameters improved and Hot Flush Score (HFS) decreased by 80%. At 12 months, WHQ, PGWB and all sleep parameters remained significantly improved (n = 14) and HFS decreased by 65%. After 12 weeks of HT (n = 18), WHQ improved from 0.29 (IQR 0.15-0.44) at baseline to 0.15 (IQR 0.05-0.22; p = 0.001), PGWB from 75 (IQR 59-88) to 90 (62-97; p = 0.102) and three of five sleep parameters improved.

    CONCLUSION: Both EA and HT increased HRQoL and sleep, probably through decreasing numbers of and distress by hot flushes. Although flushes decreased less in the EA group than in the HT group, HRQoL improved at least to the same extent maybe due to other effects of EA, not induced by HT, e.g. on anxiety, vitality and sleep, supported by subscale analyses. EA should be further evaluated as treatment for women with breast cancer and climacteric complaints, since HT no longer can be recommended for these women.

  • 34.
    Godskesen, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Ersta Sköndal University College.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap, Enheten för onkologi.
    Nordin, Karin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Hansson, Mats
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Kihlbom, Ulrik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 11, s. 3137-3142Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials. A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis. The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable. Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 35.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Nygren, Peter
    Uppsala universitet.
    Nordin, Karin
    Uppsala universitet, Universitetet i Bergen.
    Hansson, Mats
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 11, s. 3137-3142Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

    METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

    RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

    CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 36.
    Granstam Björneklett, Helena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning, Västerås.
    Lindemalm, Christina
    Immune and Gene Therapy Laboratory,Cancer Centre,Karolinska,Karolinska University Hospital.
    Ojutkangas, Marja-Leena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning, Västerås.
    Berglund, Anders
    Department of Medical Epidemiology and Biostatiststics.
    Letocha, Henry
    Onkologi kliniken Västerås.
    Strang, Peter
    Karolinska Institute,SSH Stockholm.
    Bergkvist, Leif
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning, Västerås.
    A randomized controlled trial of a support group intervention on the quality of life and fatigue in women after primary treatment for early breast cancer2012Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 20, nr 12, s. 3325-3334Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND:

    When diagnosed with breast cancer, most women's lives change as well as their perspectives on and appreciation of life. The aim of the present study was to evaluate whether psychosocial support intervention could influence health-related quality of life (HRQOL) and fatigue during the first year after diagnosis.

    MATERIAL AND METHODS:

    Of 382 patients with newly diagnosed breast cancer, 191 patients were randomized to an intervention group and 191 patients were randomized to a routine control group. The intervention group received support intervention that lasted 1 week on a residential basis, followed by 4 days of follow-up 2 months later. The support intervention included informative educational parts, relaxation training, mental visualization, and nonverbal communication. HRQOL was measured using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-BR23 questionnaires and fatigue with the Norwegian version of the fatigue scale at baseline and at 2, 6, and 12 months after intervention.

    RESULT:

    There was a time-dependent improvement in both functional and symptom scales between baseline and 12 months as measured by the EORTC QLQ-C30 and BR23 questionnaires and there was a decrease in fatigue between baseline and after 2 months with further improvement up to 12 months in both groups, but there were no differences between the intervention and control groups at any point in time.

    CONCLUSION:

    HRQOL improves and symptoms of fatigue decrease over time, but we could not see any additional effect from the rehabilitation program in this setting.

  • 37. Grunberg, S
    et al.
    Osoba, D
    Hesketh, P
    Gralla, R
    Börjeson, Sussanne
    Linköpings universitet, Hälsouniversitetet. Linköpings universitet, Institutionen för medicin och vård, Omvårdnad. Östergötlands Läns Landsting, Kirurgi- och onkologicentrum, Onkologiska kliniken US.
    Rapoport, B
    de Bois, A
    Tonato, M
    Evaluation of new antiemetic agents and definition of antineoplastic agent emetogenicity-an update2005Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 13, nr 2, s. 80-84Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Development of effective antiemetic therapy depends upon an understanding of both the antiemetic agents and the emetogenic challenges these agents are designed to address. New potential antiemetic agents should be studied in an orderly manner, proceeding from phase I to phase II open-label trials and then to randomized double-blind phase III trials comparing new agents and regimens to best standard therapy. Use of placebos in place of antiemetic therapy against highly or moderately emetogenic chemotherapy is unacceptable. Nausea and vomiting should be evaluated separately and for both the acute and delayed periods. Defining the emetogenicity of new antineoplastic agents is a challenge, since such data are often not reliably recorded during early drug development. A four-level classification system is proposed for emetogenicity of intravenous antineoplastic agents. A separate four-level classification system for emetogenicity of oral antineoplastic agents, which are often given over an extended period of time, is also proposed.

  • 38. Gudmundsdóttir, Eygló
    et al.
    Hörnquist, Lina
    Boman, Krister K
    Psychological outcomes in Swedish and Icelandic parents following a child's cancer-in the light of site-related differences2013Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, nr 6, s. 1637-45Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: This study determined the incidence of disease-related distress symptoms in parents from two treatment sites: a large specialized childhood cancer (CC) center in Sweden and a smaller pediatric unit in Iceland. The two groups were compared by considering differences in center type and care organization.

    METHODS: Participants were 328 parents of 211 CC patients, in or off treatment. Illness-specific distress was assessed using the multi-dimensional Parental Psychosocial Distress in Cancer (PPD-C) questionnaire. General psychiatric symptoms were assessed using the General Health Questionnaire (GHQ-12). Swedish and Icelandic groups were compared and outcomes studied with regard to site characteristics. Parents in the general population served as a reference group.

    RESULTS: Distress outcomes in both clinical groups exceeded the levels of the reference group. Systematic differences were found between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales of the PPD-C and in a majority of the illness-specific domains. A tendency towards more negatively affected general mental health was found in Swedish parents (GHQ, p = 0.059).

    CONCLUSIONS: Distress outcomes exceeding those of the comparison group were found in both clinical groups. Significant distress differences were found between the Swedish and the Icelandic parents. Analysis of the outcomes indicates that center type and related differences in patient influx rate and local organization of care are viable explanations of the findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden on parents of the child's cancer.

  • 39.
    Gustafsson, E.
    et al.
    Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US. Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Litström, Emma
    Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US. Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Berterö, Carina
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Drott, Jenny
    Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US. Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Reliability testing of oxaliplatin-associated neurotoxicity questionnaire (OANQ), a pilot study2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 2, s. 747-754Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE:

    The purpose of this study was to test the reliability of the Swedish version of the Oxaliplatin-Associated Neurotoxicity Questionnaire (OANQ) administrated throughout a self-reported mobile phone-based system, a pilot study.

    METHODS:

    Twenty-three patients from two university hospitals and two regional hospitals who had been treated with oxaliplatin were included through purposive sampling between autumn 2013 to autumn 2014. A test-retest was performed through a mobile phone-based system, with a recall period of 1 h to determine the reliability of the questionnaire.

    RESULTS:

    Internal consistency was strong for the three domains of the scale (α > 0.840). The statistical analyses for the test-retest indicated that the OANQ was stable. Intraclass correlation (ICC) for symptom items and effect on daily activities items showed an overall excellent reproducibility at 69 and 83 %, respectively. The weighted kappa for symptom items and daily activities items showed an overall almost perfect agreement at 59 and 52 %, respectively. A paired samples t test did not reveal any significant differences between the two measures.

    CONCLUSIONS:

    The OANQ was tested and considered a reliable assessment for capturing the oxaliplatin-induced peripheral neurotoxicity (OIPN) in patients receiving oxaliplatin. However, further reliability testing of the OANQ is needed.

  • 40. Gustafsson, Margareta
    et al.
    Edvardsson, Tanja
    Ahlström, Gerd
    Högskolan i Jönköping, Hälsohögskolan, HHJ, Avd. för omvårdnad. Högskolan i Jönköping, Hälsohögskolan, HHJ. Kvalitetsförbättringar, innovationer och ledarskap inom vård och socialt arbete.
    The relationship between function, quality of life and coping in patients with low-grade gliomas2006Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 14, nr 12, s. 1205-1212Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVES: The principal aim of the study was to describe function, quality of life and coping with illness-related problems in patients with low-grade gliomas (LGG), to evaluate the need of support. A second aim was to investigate how function, quality of life and coping were related. MATERIALS AND METHODS: Thirty-nine patients with a diagnosis of LGG answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30) and the Ways of Coping Questionnaire (WCQ). The patients' level of function was assessed in accordance with the WHO performance status scale. RESULTS AND DISCUSSION: Nearly all patients were capable of self-care, but less than half were able to carry out normal activities without restriction. Problems with fatigue, sleep disturbances and pain were most frequent. Most difficulties were reported in the domains, Role, Cognitive and Emotional functioning. Seventeen patients (45%) had scores indicating low overall quality of life. Ratings of overall quality of life and fatigue had the strongest relationship. The trend in the results suggested that mental problems have a stronger impact on quality of life than physical ones. Emotion-focused coping dominated. There was a significant relationship between coping by escape-avoidance and lower level of emotional functioning. CONCLUSIONS: The results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.

  • 41.
    Gustafsson, Margareta
    et al.
    Centre for Assessment of Medical Technology in Örebro, KFC, Örebro University Hospital, Örebro, Sweden.
    Edvardsson, Tanja
    Ahlström, Gerd
    Örebro universitet, Hälsovetenskapliga institutionen.
    The relationship between function, quality of life and coping in patients with low-grade gliomas2006Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 14, nr 12, s. 1205-1212Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVES: The principal aim of the study was to describe function, quality of life and coping with illness-related problems in patients with low-grade gliomas (LGG), to evaluate the need of support. A second aim was to investigate how function, quality of life and coping were related.

    MATERIALS AND METHODS: Thirty-nine patients with a diagnosis of LGG answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30) and the Ways of Coping Questionnaire (WCQ). The patients' level of function was assessed in accordance with the WHO performance status scale.

    RESULTS AND DISCUSSION: Nearly all patients were capable of self-care, but less than half were able to carry out normal activities without restriction. Problems with fatigue, sleep disturbances and pain were most frequent. Most difficulties were reported in the domains, Role, Cognitive and Emotional functioning. Seventeen patients (45%) had scores indicating low overall quality of life. Ratings of overall quality of life and fatigue had the strongest relationship. The trend in the results suggested that mental problems have a stronger impact on quality of life than physical ones. Emotion-focused coping dominated. There was a significant relationship between coping by escape-avoidance and lower level of emotional functioning.

    CONCLUSIONS: The results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.

  • 42.
    Hagelin, Carina Lundh
    et al.
    Research and Development Unit, Stockholms Sjukhem Foundation, Mariebergsgatan 22, Stockholm, Sweden .
    Wengström, Yvonne
    Institution of Neurobiology, Caring Sciences and Society, Section of Nursing, Karolinska Institutet, Stockholm, Sweden; Cancer Care Research Centre, Dept. of Nursing and Midwifery, University of Stirling, Stirling, United Kingdom .
    Fürst, Carl Johan
    Research and Development Unit, Stockholms Sjukhem Foundation, Mariebergsgatan 22, Stockholm 112 35, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden .
    Patterns of fatigue related to advanced disease and radiotherapy in patients with cancer: a comparative cross-sectional study of fatigue intensity and characteristics2009Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, nr 5, s. 519-526Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This cross-sectional comparative study was designed to explore and describe the prevalence and patterns of cancer-related fatigue in patients with advanced cancer as well as patients undergoing curative radiotherapy. Another aim was to explore the association of anxiety and depression with fatigue. Patients with an advanced stage of disease (n = 228) and patients receiving radiotherapy (n = 81) completed the Borg Category Ratio Scale, the Multidimensional Fatigue Inventory and the Hospital Anxiety and Depression Scale. Patients with advanced disease had an increased probability of experiencing all aspects of fatigue except for mental fatigue as compared to patients undergoing radiation, e.g., odds ratio 11.5 (CI 5.8-22.7) for physical fatigue. Higher scores for depression than for anxiety were reported when patients had high levels of fatigue, with 23% of the patients classified as anxious and 39% depressed. The present study was carried out in order to address a gap in research by comparing the multidimensional aspects of fatigue in different groups of cancer patients. It is the intensity of fatigue that seems to be related to the underlying exposure to radiation or to the level of disease burden rather than the different fatigue profiles, such as the relation between physical and mental aspects.

  • 43. Hammarström, Viera
    et al.
    Pauksen, Karlis
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Svensson, H.
    Öberg, G.
    Paul, C.
    Ljungman, P.
    Tetanus immunity in patients with hematological malignancies1998Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 6, nr 5, s. 469-472Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this study was to investigate long-term immunity to tetanus toxoid among patients with hematological disease who had been treated with conventional doses of chemotherapy. Altogether 206 patients with different hematological malignancies were included in the study. There were marked differences between the rates of seronegativity against tetanus, varying from 20% to 70% in different groups of study patients. We found that 21 of 80 (36%) patients with AML, 45 of 80 (56%) with ALL, 12 of 22 (54%) with lymphoma, 4 of 13 (31%) with myeloma and 2 of 11 (18%) with CML were not immune to tetanus. In a multivariate logistic regression model increasing age (P = 0.0001), lymphoid malignancy (P = 0.0005) and advanced disease stage (P = 0.0001) were independent risk factors for loss of tetanus immunity in patients with hematological malignancies.

  • 44. Heedman, Per Anders
    et al.
    Strang, Peter
    Linköpings universitet, Hälsouniversitetet. Linköpings universitet, Institutionen för biomedicin och kirurgi.
    Pain and pain alleviation in hospital-based home care: demographic, biological and treatment factors2003Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 11, nr 1, s. 35-40Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this study was to contrast two opposed groups, namely palliative cancer patients who were suffering significant pain (VASgreater than or equal to4) and palliative cancer patients with no pain (VAS = 0) in hospital-based home care and, retrospectively, to study possible differences in relation to demographic, biological and treatment factors. The ESAS (Edmonton Symptom Assessment Scale) was used to assess 191 palliative cancer patients on admission and after I week of home care. Fifty-two (27%) had pain (mean 5.5+/-1.7) and 72 (38%) had no pain on admission [the middle group, (n=67) had VAS 1-3]. Activity was more severely affected (5.4 vs 4.2, p<0.01) and nausea less well controlled in patients with pain (2.3 vs 0.7, P<0.0001). Pain was associated with the diagnosis of prostate cancer (P<0.01) and the presence of skeletal metastases (P<0.001), whereas pain-free patients, with or without analgesics, more often had colorectal cancer (P<.01) or melanoma (P<0.05). The medication profiles differed between the two groups: 22 (42%) of the 52 patients with pain were on step 3 of the WHO analgesic ladder and 24 of 51 (47%) were receiving antiemetics, whereas 42 (58%) of the 72 patients with no current pain had no analgesic prescribed and only 25% of them had antiemetics prescribed, indicating biological differences. If pain was present on admission a pain analysis was formally documented in 23 (44%) of the 52 cases and the medication was changed in 27 of the 52 (52%). The patients improved after I week (5.4+/-1.6 vs 3.9+/-2.3, P<0.001), and the improvement was significant even when a pain analysis was not documented or when medication was not changed. In conclusion, the results of this study indicate biological differences in pain alleviation and the need for a more structured way of working.

  • 45. Hovan, AJ
    et al.
    Williams, PM
    Stevensen-Moore, P
    Wahlin, YB
    Öhrn, Kerstin
    Högskolan Dalarna, Akademin Utbildning, hälsa och samhälle, Vårdvetenskap med inriktning mot munhälsa.
    Elting, LS
    Spijkervet, FK
    Brennan, MT
    A systematic review of dysgeusia induced by cancer therapies2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 8, s. 1081-1087Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose. The purpose was to review relevant scientific papers written since 1989 which focused on the prevalence and management of dysgeusia as an oral side effect of cancer treatment.

    Methods. Our literature search was limited to English language papers published between 1990 and 2008. A total of 30 papers were reviewed; the results of 26 of these papers were included in the present systematic review. A structured assessment form was used by two reviewers for each paper. Studies were weighted as to the quality of the study design, and treatment recommendations were based on the relative strength of each paper.

    Results. A wide range in reported prevalence of dysgeusia was identified with the weighted prevalence from 56–76%, depending on the type of cancer treatment. Attempts to prevent dysgeusia through the prophylactic use of zinc sulfate or amifostine have been of limited benefit. Nutritional counseling may be helpful to some patients in minimizing the symptoms of dysgeusia.

  • 46. Hovan, Allan J
    et al.
    Williams, P Michele
    Stevenson-Moore, Peter
    Wahlin, Ylva Britt
    Umeå universitet, Medicinska fakulteten, Institutionen för odontologi.
    Ohrn, Kirsten EO
    Elting, Linda S
    Spijkervet, Fred KL
    Brennan, Michael T
    A systematic review of dysgeusia induced by cancer therapies2010Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 18, nr 8, s. 1081-1087Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Dysgeusia is a common oral side effect of cancer therapy (radiotherapy, chemotherapy, or combined modality therapy) and often impacts negatively on quality of life. From the current literature, there does not appear to be a predictable way of preventing or treating dysgeusia.

  • 47.
    Ibrahim, Farzana
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US. Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för Kirurgi, Ortopedi och Onkologi.
    Sandström, Per A.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för Kirurgi, Ortopedi och Onkologi. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US.
    Björnsson, Bergthor
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för Kirurgi, Ortopedi och Onkologi. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US.
    Lindhoff Larsson, Anna
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för Kirurgi, Ortopedi och Onkologi. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US.
    Drott, Jenny
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Kirurgiska kliniken US. Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för Kirurgi, Ortopedi och Onkologi.
    'I want to know why and need to be involved in my own care…': a qualitative interview study with liver, bile duct or pancreatic cancer patients about their experiences with involvement in care.2019Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 27, nr 7, s. 2561-2567Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose

    Patients’ involvement in their own care is important for those with upper abdominal tumours. Care is often conducted according to standardized fast-track care programs (FTCP), and a shorter hospital stay is one of the goals. However, there is no research providing an in-depth perspective on patients’ experiences of involvement in care. In this qualitative study, we explored experiences of involvement among patients who had surgery for upper abdominal tumours and were cared for according to an FTCP.

    Methods

    Qualitative in-depth face-to-face interviews about patient involvement in care were conducted with 20 patients who had surgery for the liver, bile duct, or pancreatic cancer using an open-interview guide.

    Results

    The most important findings are that customized information and active dialogue about care decisions stimulate patient involvement. We identified three themes from the analysed data: involvement depended on the quality of information, communication and involvement during the care period, and safety at discharge.

    Conclusions

    Individualized care and continuous information about treatment and care goals in the FTCP during the care process create trust between patients and healthcare professionals and increase patient experiences of involvement.

  • 48.
    Isaksson, Joakim
    et al.
    Umea Univ, Dept Social Work, SE-90187 Umea, Sweden.
    Wilms, Torben
    Umea Univ, Dept Med Biosci, SE-90187 Umea, Sweden;Umea Univ, Dept Clin Sci Otorhinolaryngol, SE-90187 Umea, Sweden.
    Laurell, Göran
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar.
    Fransson, Per
    Department of Nursing, Umeå University, Umeå, Sweden.
    Ehrsson, Ylva Tiblom
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar.
    Meaning of work and the process of returning after head and neck cancer2015Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 1, s. 205-213Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The purposes of this study were (1) to investigate employment status at diagnosis, sick leave, and returning to work patterns in correlation to quality of life, anxiety, and depression in patients treated for head and neck cancer (HNC) and (2) to explore patients' experiences of the process of returning to work.

    METHODS: Sixty-six patients with HNC (aged 34-66 years) were repeatedly interviewed over a period of 24 months. Interview responses that concerned the patients' experiences and ideas about work were categorised using the similarities-differences technique. Questionnaires on quality of life, anxiety, and depression were used to describe the patient characteristics and the differences between groups.

    RESULTS: In total, 53 % of the patients had returned to work at 24 months after treatment, and 17 % were deceased. Several quality of life parameters were significantly worse for patients not working at 24 months after treatment. Nine categories were found to describe the return-to-work process starting with symptoms causing sick leave, thoughts about the sick leave, and ending with the return to work and/or retirement.

    CONCLUSIONS: Returning to work is an important part of life because it structures everyday life and strengthens the individual's identity. The quality of life results showed significant differences between workers and non-workers at the 24-month follow-up. The patients need to be both physically and mentally prepared for the process of returning to work. It is important to take an individual rehabilitation approach to guide and support the patients in returning to work and regaining an important aspect of their everyday life. In such an approach, it is vital to understand the patients' overall life context and the patients' own perspective on the process and meaning associated with work.

  • 49.
    Isaksson, Joakim
    et al.
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för socialt arbete.
    Wilms, Torben
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar. Umeå universitet, Medicinska fakulteten, Institutionen för medicinsk biovetenskap, Patologi.
    Laurell, Göran
    Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar, Uppsala universitet.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Tiblom Ehrsson, Ylva
    Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar, Uppsala universitet.
    Meaning of work and the process of returning after head and neck cancer2016Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, nr 1, s. 205-213Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The purposes of this study were (1) to investigate employment status at diagnosis, sick leave, and returning to work patterns in correlation to quality of life, anxiety, and depression in patients treated for head and neck cancer (HNC) and (2) to explore patients' experiences of the process of returning to work.

    Methods: Sixty-six patients with HNC (aged 34-66 years) were repeatedly interviewed over a period of 24 months. Interview responses that concerned the patients' experiences and ideas about work were categorised using the similarities-differences technique. Questionnaires on quality of life, anxiety, and depression were used to describe the patient characteristics and the differences between groups.

    Results: In total, 53 % of the patients had returned to work at 24 months after treatment, and 17 % were deceased. Several quality of life parameters were significantly worse for patients not working at 24 months after treatment. Nine categories were found to describe the return-to-work-process starting with symptoms causing sick leave, thoughts about the sick leave, and ending with the return to work and/or retirement.

    Conclusions: Returning to work is an important part of life because it structures everyday life and strengthens the individual's identity. The quality of life results showed significant differences between workers and non-workers at the 24 month follow-up. The patients need to be both physically and mentally prepared for the process of returning to work. It is important to take an individual rehabilitation approach to guide and support the patients in returning to work and regaining an important aspect of their everyday life. In such an approach, it is vital to understand the patients' overall life context and the patients' own perspective on the process and meaning associated with work.

  • 50.
    Johansson, Eva
    et al.
    Röda Korsets Högskola. Karolinska Institutet.
    Larsen, Joacim
    Röda Korsets Högskola.
    Schempp, Thérèse
    Röda Korsets Högskola.
    Jonsson, Linnea
    Röda Korsets Högskola.
    Winterling, Jeanette
    Röda Korsets Högskola. Karolinska Institutet.
    Patients' goals related to health and function in the first 13 months after allogeneic stem cell transplantation2012Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 20, nr 9, s. 2025-2032Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Patient participation in goal setting and decision making is a core component of the rehabilitation process, but there is little information on what patients want to achieve after allogeneic stem cell transplantation (allo-SCT). The aim of this study was to describe adult patients' perceptions of goals related to health and function, as well as self-perceived limitations and facilitating strategies in the first 13 months after allo-SCT. Methods: Fifteen patients with a median age of 44 years (range, 22-65 years) were interviewed on one occasion during the first year after allo-SCT. Data were analysed using qualitative content analysis. Results: Results showed that patients felt that time after allo-SCT largely concerned: "to be healthy" and "to participate in a normal life". Some patients felt it was easy to set goals while others found it difficult. Most described goals had a long-term character. Patients were faced with a wide variety of limitations of which a few did not link to a described goal. Several facilitating strategies were described that either had or could help patients to reach their goals. Conclusions: Our results indicate that assistance with setting achievable goals, including individualised strategies and support from health care professionals to realise the goals, may assist in the rehabilitation to restore health and function after allo-SCT.

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