Melanoma, a new approach to decrease delay of diagnosis and treatment

Project description

Malignant melanoma (MM), though common, is the most serious type of skin cancer, due to its aggressive ability to metastasize. Sweden has one of the highest incidence rates of MM in Europe (Karim-Kosa et al. 2008): the age-standardized incidence rate for 2007 was 26.5 per 100 000 persons for men and 24.0 for women. MM is one of the most rapidly increasing cancer forms in Sweden. For men, the average increase per year is 3.6% and for women, 3.8 % (Socialstyrelsen 2008).

Unlike other cancers, MM is generally visible and can be easily and cheaply cured if treated in time. It is the delay of diagnosis that results in mortality. Prognosis of MM is poor if diagnosed late, but good if it is diagnosed early, i.e. the chance to be cured increases dramatically if the MM is still ‘young and thin’ when removed (Balch et al. 2001). Several studies report that the majority of melanomas are first detected by the patients themselves (Brady et al. 2000, Epstein et al. 1999, Koh et al. 1992, Schwartz et al. 2002), but a high proportion of patients do not show their melanoma to a physician immediately after they have detected it, and some wait several years(Richard et al. 2000a). The detection-access to treatment cycle must occur in an expedient manner because melanomas can be cured by simple excision if treated in an early (non-invasive) stage (Balch et al. 2001).The prognosis for metastatic melanoma, on the other hand, remains pessimistic, since treatment options for metastases are still disappointing (Serrone et al, 2000).

It is this patient delay, exceeding delay due to practitioner availability or response (Richard et al.2000, Betti et al. 2003), that is the primary cause of morbidity in melanoma care. Although self-discovery is the most common method for melanoma detection, patients with self-detected melanomas often wait for extensive time periods before having a diagnostic confirmation (Blum et al. 1999, Carli et al. 2004).This phenomenon highlights that patients not only need to be capable to detect their potential tumours, but also to act upon this detection with an active, immediate physician-seeking strategy rather than passive coping strategies.
However, it is a common experience of dermatologists that patients may not show their melanoma to a physician, despite the fact that they had detected it several years ago (Richard et al. 2000 a,b) perhaps because they are afraid of the possible consequences. Further, screening studies for melanoma remain inefficient in reducing melanoma-related morbidity(USPSTF 2003).
Low-risk patients, usually younger with non-malignant skin lesions appear more likely to participate in screening programs and often seek care, while patients with MM in many remain undignosed. In order to reach the right group of people to seek treatment earlier, we need to understand what drives them and how they make the decision to seek care.
The general aim of the project is to explore reasons for delay in care seeking and diagnosis of malignant melanoma.

The specific objectives to be addressed in this PhD-project study are
• To explore the process in decision making about seeking care for malignant melanoma (Paper I)
• To identify describe gender specific patterns in care seeking for malignant melanoma (Paper II)
• To analyse coping styles in decision making, health beliefs and illness perceptions among people seeking care for malignant melanoma in various stages compared with people seeking care for non malignant skin changes (Paper III)
• To analyse the path ways between various clinics and care givers in health care for people diagnosed with malignant melanoma (Paper IV)

In this project we plan to use different methods, ie interviews, questionnaires, patient registers and medical record data.
Interviews with 30 patients are analyzed with qualitative methods (Grounded theory-paper I, and Qualitative content analysis-paper II). Questionnaries will be addressed to 330 patients to measure coping strategies on decision making (Study III). The selection is strategic and its size is determined based on the relationship between questions in the questionnaires and the number of participants. The questionnaires shoul be analyzed using multivariate statistical methods. Records studies and journal studies included (Paper III and IV).
All four studies included in this project with its objectives, participants, methods and analysis are described below:

Study I: To describe the decision making process to seek treatment for malignant melanom. 21 patients (of which 11kvinnor) diagnosed with malignant melanoma during the past two years; qualitative narrative interviews,analyzed with the GT (Glaser &Straus,1967).

Study II: to identify specific gender patterns of seeking care for MM. 30 patients (including 15 women) diagnosed with MM during the past two years; Narrative interviews analyzed using content analysis (Graneheim & Lundman,2004).

Study III: To analyze copingstyiles in decision-making process, among people who seek treatment for malignant melanoma and to compare them with people who seek care for non malignant skin-changes.Patients diagnosed with MM during the last two years (n = 220) in the county and patients seeking care for non-malignant skin lesions (n = 110). Data collection is done through questionnarie Quantitative Mebourne Decision Making Questionnaire. Statistical methods as parametric or non-parametric methods and multivariate analysis should be used in analysis of questionnaries responses.

Study IV: To identify patients' paths and referral pathways between different clinics and health care providers during the process of seeking care and treatment for MM. Patients (n = 100) from County of Västerbotten diagnosed with MM in 2009 are included in this study and will be followed backward from diagnosis to identify the referral route from the moment the patient first sought treatment until diagnosis. Here we will use of mixed methods as patient registers and medical record data.

References:
Socialstyrelsen, Socialstyrelsen 2007 - Cancer Incidence in Sweden 2007. 2008.

Schwartz, J.L., et al., Thin primary cutaneous melanomas: associated detection patterns, lesion characteristics, and patient characteristics. Cancer, 2002. 95(7): p. 1562-8.

Epstein, D.S., et al., Is physician detection associated with thinner melanomas? Jama, 1999. 281(7): p. 640-3.

Balch, C.M., et al., Prognostic factors analysis of 17,600 melanoma patients: validation of the American Joint Committee on Cancer melanoma staging system. J Clin Oncol, 2001. 19(16): p. 3622-34.

Betti, R., et al., Factors of delay in the diagnosis of melanoma. Eur J Dermatol, 2003. 13(2): p. 183-8.

Brady, M.S., et al., Patterns of detection in patients with cutaneous melanoma. Cancer, 2000. 89(2): p. 342-7.

Blum, A., et al., Awareness and early detection of cutaneous melanoma: an analysis of factors related to delay in treatment. Br J Dermatol, 1999. 141(5): p. 783-7.

Glaser, B.G. and A.L. Strauss, The Discovery of Grounded Theory: Strategies for Qualitative Research. 1967, Chicago: Aldine Publishing Company.

Graneheim, U. and B. Lundman, Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004 Feb. 24(2): p. 105-12.

Karim-Kosa HE, de Vriesa E, Soerjomatarama I, Lemmensa V, Sieslingc S & Coebergha JW (2008) Recent trends of cancer in Europe: A combined approach of incidence, survival and mortality for 17 cancer sites since the 1990s. European Journal of Cancer 44, 1345-1389.

Koh, H.K., et al., Who discovers melanoma? Patterns from a population-based survey. J Am Acad Dermatol, 1992. 26(6): p. 914-9.

Richard MA, Grob JJ, Avril MF, Delaunay M, Gouvernet J, Wolkenstein P, Souteyrand P, Dreno B, Bonerandi JJ, Dalac S, Machet L, Guillaume JC, Chevrant-Breton J, Vilmer C, Aubin F, Guillot B, Beylot-Barry M, Lok C, Raison-Peyron N & Chemaly P (2000a) Delays in diagnosis and melanoma prognosis (I): The role of patients. International Journal of Cancer, 89, 271-279.

Richard MA, Grob JJ, Avril MF, Delaunay M, Gouvernet J, Wolkenstein P, Souteyrand P, Dreno B, Bonerandi JJ, Dalac S, Machet L, Guillaume JC, Chevrant-Breton J, Vilmer C, Aubin F, Guillot B, Beylot-Barry M, Lok C, Raison-Peyron N & Chemaly P (2000b) Delays in diagnosis and melanoma prognosis (II): The role of doctors. International Journal of Cancer, 89, 280-285.

Carli, P., et al., Self-detected cutaneous melanomas in Italian patients. Clin Exp Dermatol, 2004. 29(6): p. 593-6.

Serrone, L., et al., Dacarbazine-based chemotherapy for metastatic melanoma: thirty-year experience overview. J Exp Clin Cancer Res, 2000. 19(1): p. 21-34.

USPSTF, Counseling to prevent skin cancer: recommendations and rationale of the U.S. Preventive Services Task Force. MMWR Recomm Rep, 2003. 52(RR-15): p. 13-7.