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Patient experiences of the radiotherapy process and treatment
Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.ORCID iD: 0000-0002-4977-1434
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background

Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory. RT is often associated with unfamiliar procedures where the technical environment, side effects and interaction with staff seem to play a major role in the patient’s treatment experience. These experiences could sometimes lead to disruption of the treatment which may have negative consequences for the outcome. The overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.

Aim

The overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.

Methods

To gain further knowledge and understanding about patients experience of RT both quantitative (I, II, III) and qualitative (III, IV) methodology were used. The data in the thesis focused on patients undergoing external RT at different RT units in Sweden. Study I and II, focused on two regions, the northern region of Sweden and the region of Stockholm and Gotland.  Study III and IV were performed at eight different RT units in Sweden.

Results

In Study I, two types of topical agents (Calendula Weleda cream vs. Essex cream) were compared regarding reducing the risk of severe acute radiation skin reactions (ARSR). No difference in severe ARSR was found between the groups and the patients reported low levels of ARSR. In Study II, the influence of an RT unit’s psychosocial climate and treatment environment on cancer patients’ anxiety during external RT was evaluated. Data was collected (questionnaire) from 892 patients. The results showed that both the treatment environment and the psychosocial climate of the RT unit significantly impacted cancer patient anxiety levels. In Study III & IV, a questionnaire to measure the patient´s experience during external RT was developed and tested. The results showed that the RT Experience Questionnaire (RTEQ), with 23 items, was a tentatively valid and reliable instrument to measure how patients experience the RT process and the environment in the treatment room. In Study IV, written comments from the open-ended question “Is there anything else you want us to know?” in the preliminary RTEQ was analysed with qualitative content analysis. This data was abstracted into the following four major categories reflecting the experience of the RT process:  Experiences in the high tech RT environment; Understanding the RT procedures and side effects; Dealing with daily life during RT and The nurses’ role and performance.

Conclusion

The RT environment and the RT related processes seem to impact cancer patients, both physically and psychologically. A person-centered care approach, as well as attention to the design, both of the treatment process and the physical environment could significantly improve the patient experience and patient involvement. The results also highlight the importance of taking patient experiences into account when introducing new RT methods and techniques.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2016. , 52 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1860
Keyword [en]
Cancer, radiotherapy, radiation skin reactions, patient experience, treatment environment, anxiety, person-centred care, questionnaire.
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
URN: urn:nbn:se:umu:diva-127456ISBN: 978-91-7601-594-0OAI: oai:DiVA.org:umu-127456DiVA: diva2:1046625
Public defence
2016-12-09, Sal E04, Byggnad 6E, Biomedicin, Norrlands universitetssjukhus, Umeå, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2016-11-17 Created: 2016-11-14 Last updated: 2016-11-15Bibliographically approved
List of papers
1. No differences between Calendula cream and aqueous cream in the prevention of acute radiation skin reactions: results from a randomised blinded trial
Open this publication in new window or tab >>No differences between Calendula cream and aqueous cream in the prevention of acute radiation skin reactions: results from a randomised blinded trial
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2013 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 4, 429-435 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: The purpose of this blinded, randomized clinical trial was to compare two topical agents (Calendula Weleda (R) cream vs. Essex (R) cream) in reducing the risk of severe acute radiation skin reactions (ARSR) in relation to adjuvant radiotherapy (RT) for breast cancer.

Method: The primary endpoint was the difference in proportion of patients with ARSR, assessed with the Radiation Therapy Oncology Group/The Organization for Research and Treatment of Cancer Acute Radiation Morbidity Scoring Criteria (RTOG/EORTC scale) at follow-up. The secondary endpoints included patient reported outcome measures; Quality of Life Questionnaire (QLQ-C30), Sleep disturbances (MOS-sleep questionnaire) and symptoms from the irradiated area (visual analogue scale). Patients' experiences and adherence to the topical agents were also evaluated.

Results: A total of 420 patients were randomised and 411 were analysed. With the exception of previous chemotherapy, the treatment groups were well balanced, both regarding treatment- and patient-related factors. The incidence of severe ARSR (RTOG/EORTC grade <= 2) at the follow-up visit was 23% (n = 45) in the Calendula group and 19% (n = 38) in the Essex group. We found no difference in severe ARSR between the groups at any point of assessment. The patients reported low levels of skin related symptoms and no statistically significant differences between the groups were found.

Conclusions: No differences in ARSR between patients randomised to Calendula or Essex cream was found. ARSR seem to be a relatively limited problem, probably more influenced by treatment related factors than by choice of skin care products in this patient group.

Keyword
Breast cancer, Radiotherapy, Radiation skin reaction, Skin, Randomised trial, Dermatitis, Patient reported outcomes, Calendula, Aqueous cream
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-79233 (URN)10.1016/j.ejon.2012.11.003 (DOI)000321603500007 ()23245940 (PubMedID)
Available from: 2013-09-06 Created: 2013-08-13 Last updated: 2016-11-15Bibliographically approved
2. The influence of a department's psychosocial climate and treatment environment on cancer patients' anxiety during radiotherapy
Open this publication in new window or tab >>The influence of a department's psychosocial climate and treatment environment on cancer patients' anxiety during radiotherapy
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2016 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 20, 113-118 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The objective of this study is to determine whether there is a relationship between cancer patients' perceptions of the person-centeredness of their treatment experience and their anxiety levels during treatment.

METHOD: A questionnaire was distributed to adult cancer patients going through external beam radiotherapy (RT) with curative intent at a university hospital in Sweden (n = 892), which included two surveys, the State Trait Anxiety Inventory-state specific questions (STAI-S), and the Patient-centered Climate Questionnaire (PCQ) and additional treatment-specific questions. Eligible patients were provided with the questionnaire on their seventh day of RT by an RT-nurse.

RESULTS: Statistical analysis showed a significant negative relationship between STAI-S scores and PCQ scores, and a significant positive relationship between the Treatment Environment questions and the STAI-S scores. Multivariate regression modeling found the PCQ subscale of safety to have the strongest negative association with STAI-S scores, showing that a climate of safety can significantly decrease patient situational anxiety levels. On the other hand, difficulty tolerating the overall treatment experience, worry about the treatment equipment, or feelings of isolation or claustrophobia within the treatment room all significantly factor into increases in patient-reported situational anxiety levels.

CONCLUSION: Both the treatment environment and the psychosocial climate of the RT clinic significantly impact cancer patient state anxiety levels. These findings suggest that actively employing a person-centered approach during RT, and designing the treatment environment to be more attentive to the patient experience can both play a significant role in decreasing patient situational anxiety during treatment.

Keyword
Patient experience, Anxiety, Radiotherapy, Person-centered care STAI, PCQ, Treatment environment
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-111272 (URN)10.1016/j.ejon.2015.06.009 (DOI)000368745800016 ()26153544 (PubMedID)
Available from: 2015-12-20 Created: 2015-11-11 Last updated: 2016-11-14Bibliographically approved
3. Development and psychometric testing of an instrument to measure the patient’s experience of external radiotherapy: The Radiotherapy Experience Questionnaire (RTEQ)
Open this publication in new window or tab >>Development and psychometric testing of an instrument to measure the patient’s experience of external radiotherapy: The Radiotherapy Experience Questionnaire (RTEQ)
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Abstract

The patient’s perception of radiotherapy (RT) procedures and equipment is important to evaluate as a complement to endpoints such as treatment outcome and reproducibility. There is a lack of a proper, psychometrically robust instrument to evaluate the patient’s comfort and experience of the RT procedure. Hence, this study aimed to develop and test an instrument to measure the patient’s experience during external RT.

 

Material and Methods

A preliminary 34-item questionnaire was generated from research literature, expert consultations and patient interviews, and it was distributed to patients (n = 825) at 8 RT units in Sweden. The answers were subjected to item analysis and reduction by using exploratory factor analysis. The reliability of the final questionnaire was evaluated using Cronbach´s alpha. Mean scale scores were compared across gender, length of RT and treatment area.

 

Results

Most items were highly skewed towards positive responses. Scree plot analyses of the 34-timen correlation matrix identified six underlying themes explaining 68% of the total variance. After item reduction, the 6 themes explained 73% of the variance in a 23-item questionnaire.  Cronbach´s alpha was satisfactory for all themes (between 0.79 and 0.9). Significant differences between treatment areas were found for two scales: situational discomfort and situational coping.

 

Conclusion

The RT Experience Questionnaire is a tentatively valid and reliable instrument to measure how patients experience the RT session process and the environment in the treatment room.

Keyword
patient experience; radiotherapy; questionnaire; instrument
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
urn:nbn:se:umu:diva-127452 (URN)
Available from: 2016-11-14 Created: 2016-11-14 Last updated: 2016-11-14
4. What matters to you? – Free-text comments in a questionnaire from patients undergoing radiotherapy
Open this publication in new window or tab >>What matters to you? – Free-text comments in a questionnaire from patients undergoing radiotherapy
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment.

 

Methods: The data consisted of free-text comments from one open-ended question: “Is there anything else you want us to know” and were analysed using qualitative content analysis.

 

Results: Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The analysis of the data resulted in four major categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses’ role and performance.

 

Conclusion: The categories reflect the patients’ experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients’ daily lives. 

Keyword
patient experience; radiotherapy; qualitative
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
urn:nbn:se:umu:diva-127454 (URN)
Available from: 2016-11-14 Created: 2016-11-14 Last updated: 2016-11-14

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