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Patient and health care delays in malignant melanoma
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology. Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry. (-)
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Unlike other cancers, malignant melanoma (MM) is generally visible and can be easily and effectively cured if treated in time. Optimal cure of MM requires early detection, diagnosis, and treatment, which improves prognosis. However, patients as well as the health care organization and its professionals contribute to delayed treatment in various ways.

Aims and objectives: The general aim of this PhD thesis was to explore reasons for delay in care seeking, diagnosis, and treatment of malignant melanoma. The specific objectives to be addressed were

  • To explore patients’ decision making about seeking care for malignant melanoma
  • To identify specific patterns in the decision-making process to seek care for suspect melanoma, as narrated by women and men
  • To compare self-reported decision making coping styles between men and women in various ages, who live with or without a partner and are diagnosed with various stages of malignant melanoma in northern Sweden.
  • To describe and compare patients diagnosed with MM, depending on their initial contact with care, and with regard to age, sex, and MM type and thickness, and to explore pathways and time intervals between clinics from the initial contact to diagnosis and treatment.

Methods: In studies I and II, 21 and 30 patients, respectively, were interviewed about their decision making to seek care for MM. Study II focused on gender patterns in this decision making. The interviews were analysed using Grounded Theory (I) and qualitative content analysis (II). Study III included 270 people with MM who completed a translated questionnaire (Melbourne Decision Making Questionnaire) about coping styles in decision making. In study IV the pathways and time delay in health care for 71 people with MM were explored. Studies I and II were qualitative, whereas studies III and IV were quantitative.

Results: In study I, the insights into severity and feelings of fear and existential threat were identified as key motivators for patients to decide to seek care for a suspected melanoma. Results in study II showed that gender constructions influenced the care-seeking behaviour. Women acknowledged the skin changes and attempted self-care first. They delayed care seeking due to family responsibilities. Men seldom acknowledged the suspicious skin change, but sought care immediately after prompting, and most often complied with relatives’ advice to seek care. Study III showed that men generally scored higher in buck-passing, while women and those living without a partner scored higher in hypervigilance. Participants with nodular melanoma (NM), a rapid-growing form of MM, scored higher in vigilance than those diagnosed as in situ melanoma. No correlation was found between tumour thickness and coping styles. Some differences concerning treatment of MM were found in study IV between people who initially had sought care at primary health care centres (PHC) and those who had sought care at dermatological and specialist clinics (Derm). Thicker tumours as well as NM were more common in the PHC group. A larger proportion of patients from PHCs were primarily excided within the primary health care; however, almost all of them were later referred to surgical clinics for wide excision. Patients within the PHC group also had to wait longer for the registered results of histopathological assessments. In general, women waited a shorter time for primary excision, and older people waited longer for wide excision.

Conclusions: Time delay of diagnosis and treatment of MM is still common, and crucial to decrease. Future interventions should include gender aspects to influence people to seek care earlier. In health care, time delay could be decreased by facilitating access for patients with suspected skin melanomas, but also by reducing unnecessary referrals. Moreover, organizational changes whereby general practitioners and primary health care nurses are supported in using new technology for faster diagnoses and management of MM in collaboration with specialist clinics should be considered. Easy access and frequently used guidelines for MM could further decrease delay. Lastly, more efficient transfer and registration of laboratory results and referrals could decrease delay and improve patient safety.

Abstract [sv]

Bakgrund: Malignt melanom (MM) är till skillnad från andra cancerformer ofta synlig och kan enkelt och kostnadseffektivt botas om det behandlas i tid. En optimal prognos av MM förutsätter tidig upptäckt, diagnos och behandling. Patienter, samt hälso- och sjukvården, dess organisation och dess personal kan på olika sätt bidra till fördröjning av behandlingen av MM.

Syfte: Det övergripande syftet med denna avhandling var att undersöka orsaker till fördröjning att söka vård, diagnosticera och behandla malignt melanom. Specifika delsyften var:

 

  • Att utforska patienternas beslutsfattande process att söka vård för MM
  • Att identifiera specifika mönster i beslutsfattande-processen att söka vård för misstänkt MM utifrån kvinnors och mäns egna berättelser 
  • Att jämföra självrapporterade coping-stilar i den beslutsfattande processen mellan män och kvinnor i olika åldrar, boende med eller utan partner, och diagnosticerade med MM i olika stadier från norra Sverige
  • Att beskriva och jämföra patienter med MM utifrån deras primära vårdkontakt samt utifrån ålder, kön, MM-typ och tjocklek. Ytterligare att utforska vård- och remissvägar samt tidsintervaller mellan olika kliniker från första kontakt till diagnos och behandling.

Metod: I studie I och II, intervjuades 21 respektive 30 patienter om den beslutsfattande processen att söka vård för MM. Genuskonstruktioner i relation till den beslutsfattande processen var i fokus i studie II. Intervjuerna analyserades med hjälp av Grounded Theory (I) och kvalitativ innehållsanalys (II). I studie III inkluderades 270 patienter med MM som besvarade ett instrument (MDMQ) avseende coping-stilar i beslutsfattande processen. I studie IV undersöktes övergångar mellan olika kliniker och remissvägar för 71 patienter med MM samt eventuell tidsfördröjning inom hälso- och sjukvården.

Resultat: I studie I, identifierades insikt i allvarlighetsgrad samt rädsla och existentiellt hot till följd av tillståndet vara nyckel-motivatorer för att bestämma sig för att söka vård för misstänkt hudmelanom. Resultat från studie II påvisade att genuskonstruktioner påverkar hur personer söker vård för MM. Kvinnor upptäckte själv sina melanom och försökte tillämpa egenvård i början. De kunde dröja att söka vård pga. ansvar för familjen. Män upptäckte sällan suspekta melanom själva men följde oftast anhörigas råd att söka vård och sökte vård omedelbart efter påstötning.

Resultaten från studie III visade att män i högre grad använde en avvaktande startegi (buck-passing) medan kvinnor och de som bodde utan partner var överdrivet vaksamma (hypervigilance). Deltagare med nodulärt melanom (NM), en snabbt växande form av MM, var mer vaksamma (vigilance) jämfört med de med melanom in situ, en mycket tidig form av melanom. Några korrelationer mellan tumörtjocklek och coping-stilar hittades ej. Vissa skillnader avseende typer av MM samt vårdens handläggning beroende på var patienter initialt sökt vård identifierades i studie IV. Bland patienter som initialt sökt vård på hälsocentralerna var tjockare tumörer vanligare jämfört med dem som hade sökt vård på hud- och andra specialistklinker. Dessa patienter hade också som regel genomgått den primära excisionen på hälsocentralerna och en majoritet blev senare remitterade till kirurgisk klinik för utvidgad excision. Hälsocentralernas patienter fick vänta längre på att det histopatologiska svaret registrerades i journalen än sjukhusklinikernas patienter. Kvinnor fick generellt vänta kortare tid på primär excision och äldre patienter fick vänta längre för utvidgad excision.

Slutsatser: Tidsfördröjning av diagnos och behandling av MM är fortfarande vanlig och därför viktig att minska. Framtida interventioner för att påverka människor att söka vård tidigare bör inkludera genusaspekter. Inom hälso- och sjukvården kan tidsfördröjning minskas genom förbättrad tillgänglighet för patienter med misstänkta hudmelanom, men också genom minskning av onödig remittering. En förändrad organisation där sjuksköterskor och primärvårdsläkare i samarbete med specialistkliniker stöttas att använda ny teknologi för snabbare diagnosticering och omhändertagande av MM bör övervägas. Ökad kännedom bland hälso- och sjukvårdspersonal om riktlinjer for MM-vård kan vidare minska fördröjning. Till sist, mer effektiva och förbättrade arbetssätt kring registrering och överföring av laboratoriska svar och remisser skulle kunna minska fördröjning och därmed öka patientsäkerheten.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2012. , 79 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1485
Keyword [en]
Care seeking, delay, diagnosis, decision making, gender, malignant melanoma, nursing, organization, pathways, severity
Keyword [sv]
Allvarlighetsgrad, att söka vård, beslutsfattande, diagnos, fördröjning, genus, malignt melanom, omvårdnad, organisation, remissvägar
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-54392ISBN: 978-91-7459-397-6 (print)OAI: oai:DiVA.org:umu-54392DiVA: diva2:523696
Public defence
2012-05-23, Bergasalen, Norrlands universitetssjukhus (NUS) byggnad 27 - Kvinna-barn-onkologi-huset, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2012-05-02 Created: 2012-04-25 Last updated: 2014-06-30Bibliographically approved
List of papers
1. Patients' decision making in seeking care for suspected malignant melanoma
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2010 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 2, no 2, 164-173 p.Article in journal (Refereed) Published
Abstract [en]

Aim. To explore patients' decision making about seeking care for malignant melanoma (MM).

Background. Unlike other cancers, MM is generally visible and can be easily and cheaply cured if treated in time. It is the delay in diagnosis, most often attributable to the patient rather than to care providers, that results in mortality. Self-examination of suspicious lesions is important, but it is not a guarantee of immediate care-seeking, nor is early detection and increased melanoma awareness associated with early care-seeking.

Method. During 2009, men (n = 10) and women (n = 11) diagnosed with malignant melanoma were interviewed within two years after excision and the text was analysed according to Grounded Theory.

Results. The perception of a critical level of severity, feelings of fear and threat were found to be a key motivator for patients to seek care for suspected melanomas; as soon as sufficient insight into the severity of the disease was achieved, the patient reached a turning point and sought care immediately.

Conclusions. Most of the participants described the process from the discovery of the lesion to the decision to seek care as a time-consuming inner negotiation about the severity of the disease, personal and social considerations, and interactions with the healthcare system.

Relevance to clinical practice. We analysed the complex reasoning of the patients leading up to the turning point when they sought care. This study illustrates for caregivers the importance of simplifying the pathways to care, emphasising the seriousness of MM, and taking worried patients seriously from their first contact with health care. Health professionals, through their attitudes in contact with patients, can either facilitate or obstruct the patient's decision making process.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2010
Keyword
Careseeking behaviour, decision making, malignant melanoma
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-34656 (URN)10.1111/j.1752-9824.2010.01057.x (DOI)
External cooperation:
Available from: 2010-06-10 Created: 2010-06-10 Last updated: 2017-12-12Bibliographically approved
2. Malignant melanoma: gender patterns in care seeking for suspect marks
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2011 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 17-18, 2676-2684 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objectives. Gender patterns in self-detection of melanoma are not sufficiently highlighted in the literature. The aim of the study was to identify specific patterns in the decision-making process to seek care for suspect melanoma, as narrated by women and men.

Background. Females have a more favourable prognosis than males and also a higher level of perceived susceptibility and a higher level of knowledge about melanoma. Women are, furthermore, more prone to participate in screening.

Method. Thirty patients (15 women and 15 men) with a mean age of 55.5 years and diagnosed with malignant melanoma were interviewed about their decisions to seek care for suspect skin marks. The interviews were transcribed and analysed with qualitative content analysis.

Results. Care-seeking behaviour for suspect melanoma was influenced by gender constructions. Men seldom or never acknowledged interest in attention to bodily changes, but when they became aware of changes, they often took a quick decision and sought an expert's assessment. Men were compliant with wives' and relatives' advice about seeking care. All women reported that they paid attention to bodily changes, but they often delayed care seeking, due to family responsibilities and emotional struggles. The women also attempted self-care remedies, such as applying ointment, before seeking professional care.

Conclusions. There are gender-specific patterns that may influence decision making in the care-seeking process. Such patterns are important to identify, since health care professionals must take these factors into account in communicating with men and women.

Relevance to clinical practice. Nurses and in particular those working in telephone counselling, are often at the frontlines, deciding who can have access to health services. They are ideally placed to tackle the issue of gender constructions in the development of effective health care services.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2011
Keyword
care seeking, coping, decision making, gender constructions, malignant melanoma
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-46301 (URN)10.1111/j.1365-2702.2011.03788.x (DOI)000293748900031 ()21777314 (PubMedID)
External cooperation:
Available from: 2011-08-30 Created: 2011-08-30 Last updated: 2017-12-08Bibliographically approved
3. Coping styles in decision making among men and women diagnosed with malignant melanoma
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2013 (English)In: Journal of Health Psychology, ISSN 1359-1053, E-ISSN 1461-7277, Vol. 18, no 11, 1445-1455 p.Article in journal (Refereed) Published
Abstract [en]

Early care seeking is important for prognosis of malignant melanoma. Coping styles in decision-making to seek care can relate to prognosis since avoidant strategies could delay care seeking. The aim of this study was to compare self-reported coping styles in decision-making between men and women diagnosed with malignant melanoma. We used the Swedish version of the Melbourne Decision-Making Questionnaire to assess coping styles. Men generally scored higher in buck-passing while women and those living without a partner scored higher in hypervigilance. This knowledge could be used in the development of preventive programmes with intention to reach those who delay care seeking.

Place, publisher, year, edition, pages
Sage Publications, 2013
Keyword
Care seeking, coping styles, decision-making, melanoma
National Category
Dermatology and Venereal Diseases Psychiatry Nursing
Identifiers
urn:nbn:se:umu:diva-54090 (URN)10.1177/1359105312464671 (DOI)000325860200006 ()23325378 (PubMedID)
External cooperation:
Available from: 2012-04-16 Created: 2012-04-16 Last updated: 2017-12-07Bibliographically approved
4. Health care delay in malignant melanoma: various pathways to diagnosis and treatment
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2014 (English)In: Dermatology Research and Practice, ISSN 1687-6105, E-ISSN 1687-6113, 294287- p.Article in journal (Refereed) Published
Abstract [en]

We aimed to describe and compare patients diagnosed with malignant melanoma (MM), depending on their initial contact with care andwith regard to age, sex, andMMtype and thickness, and to explore pathways and time intervals (lead times) between clinics from the initial contact to diagnosis and treatment.The sample from northern Sweden was identified via the Swedish melanoma register. Data regarding pathways in health care were retrieved from patient records. In our unselected population of 71 people diagnosedwith skinmelanoma of SSMandNMtypes, 75%of patients were primarily treated by primary health-care centres (PHCs). The time interval (delay) from primary excision until registration of the histopathological assessment in the medical records was significantly longer in PHCs than in hospital-based and dermatological clinics (Derm). Thicker tumors were more common in the PHC group. Older patients waited longer times for wide excision. Most MM are excised rapidly at PHCs, but some patients may not be diagnosed and treated in time. Delay of registration of results from histopathological assessments within PHCs seems to be an important issue for future improvement. Exploring shortcomings inMMpatients’ clinical pathways is important to improve the quality of care and patient safety.

Place, publisher, year, edition, pages
Hindawi Publishing Corporation, 2014
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-54092 (URN)10.1155/2014/294287 (DOI)
External cooperation:
Available from: 2012-04-16 Created: 2012-04-16 Last updated: 2017-12-07Bibliographically approved

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