“Melanoma: Questions and Answers.” Development and evaluation of a psycho-educational resource for people with a history of melanoma
- 603 Downloads
People with melanoma often report pervasive fears about cancer recurrence, unmet information needs, and difficulties accessing psychological care. Interventions addressing the supportive care needs of people with melanoma are rare, and needs are often overlooked. The study evaluated a newly developed, evidence-based, psycho-educational resource for people with melanoma.
The evaluation study comprised three groups: adults at high risk of new primary disease due to multiple previous melanomas or one melanoma and dysplastic nevus syndrome (DNS), adults at moderate risk due to one previous melanoma and no DNS, and health professionals involved in melanoma care. Participants evaluated a 68-page psycho-educational booklet, Melanoma: Questions and Answers, developed by a multidisciplinary team in accordance with published evidence, clinical guidelines, and intervention development frameworks. The booklet comprised seven modules featuring information on melanoma diagnosis, treatment, prognosis, and ongoing clinical management; risk factors and the role of genetic counseling services for melanoma; psycho-education on emotional, behavioral, and cognitive responses to melanoma, including psycho-education on fear of cancer recurrence; description of healthy coping responses; a suite of tailored tools to support skin self-examination, doctor-patient communication, and identification of the signs and symptoms of anxiety and depression; a list of community-based services and resources; and tools to support melanoma-related record keeping and monitoring. Resource acceptability, relevance, quality, dissemination preferences, emotional responses, unmet information needs, and demographic characteristics were assessed.
Nineteen melanoma survivors (response rate 50 %) and 10 health professionals (response rate 83 %) evaluated the resource. Responses were overwhelmingly positive; the booklet was thoroughly read and highly rated in terms of quality and quantity of information, utility of health education tools, and capacity to address unmet needs. Ninety-five percent of melanoma survivors would recommend the booklet to others. Most preferred a paper-based format, provided by their treating doctor at diagnosis.
Melanoma: Questions and Answers was feasible and acceptable and demonstrated a strong capacity to address the information and psycho-educational needs of people with melanoma at low fiscal cost.
KeywordsMelanoma Psychological stress Intervention Education Fear of cancer recurrence Survivorship
Heartfelt thanks to the patients and health professionals who generously gave their time to review earlier versions of the booklet, especially Dr. Elliot Coates, Associate Professor Ross Menzies, Dr. Jordana McLoone, Ms. Heather Reilly, Dr. Pascale Guitera, Ms. Catherine Deans, Dr. Bridget Callaghan, and Dr. Rachael Morton. We also thank Ms. Angela Vangelov for her creative approach to the graphic design of the booklet, CeMPED at The University of Sydney for providing the Question Prompt Sheet that was adapted for the resource, and the Sydney Melanoma Diagnostic Centre at the Royal Prince Alfred Hospital and GenoMEL: the international melanoma genetics consortium, for the provision of images used in the booklet. Nadine Kasparian is supported by a Career Development Fellowship from the National Health and Medical Research Council (NHMRC) of Australia (1049238). Phyllis Butow is supported by an NHMRC Senior Principal Research Fellowship (1022582). Bettina Meiser is supported by an NHMRC Senior Research Fellowship (1078523). This work was also supported by a Project Grant from beyondblue: the national depression initiative (Kasparian) and a Cancer Institute NSW Program Grant for Excellence in Translational Research (Mann, Menzies). Anne Cust is supported by Career Development Fellowships from the NHMRC (1063593) and Cancer Institute NSW (15/CDF/1-14). Mbathio Dieng receives a PhD scholarship through a Cancer Institute NSW Fellowship (Cust) and a Sydney Catalyst Top-Up Research Scholar Award.
Compliance with ethical standards
Disclosure of conflicts of interest
None to declare.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- 1.Australian Institute of Health and Welfare (AIHW) (2015) Australian Cancer Incidence and Mortality (ACIM) books: Melanoma of the skin. Canberra: AIHW. http://www.aihw.gov.au/acim-books
- 2.Cancer Australia. Melanoma of the Skin in Australia (2015) http://melanoma.canceraustralia.gov.au/statistics. Accessed January, 2016.
- 12.Costa DSJ, Dieng M, Cust AE, Butow PN, NA K (2015) Psychometric properties of the fear of cancer recurrence inventory: an item response theory approach. Psycho-Oncol (in press)Google Scholar
- 16.Australian Cancer Network (2008) Clinical Practice Guidelines for the Management of Melanoma in Australia and New Zealand. Canberra: National Health and Medical Research Council (NHMRC)Google Scholar
- 19.Foot G, Sanson-Fisher R (1995) Measuring unmet needs of people living with cancer. Cancer Forum 19(2):131–135Google Scholar
- 20.Bonevski B, Sanson-Fisher R, Hersey P, Paul C, Foot G (1999) Assessing the perceived needs of patients attending an outpatient melanoma clinic. J Psychosoc Oncol 17(3–4):101–118Google Scholar
- 25.Medical Research Council. Developing and evaluating complex interventions: new guidance. London: Medical Research Council;2006.Google Scholar
- 26.Lazarus R, Folkman S (1984) Stress, appraisal, and coping. Springer, New YorkGoogle Scholar
- 28.National Breast Cancer Centre and National Cancer Control Initiative (2003) Clinical practice guidelines for the psychosocial care of adults with cancer. National Breast Cancer Centre, Camperdown, NSWGoogle Scholar
- 29.National Health and Medical Research Council (2000) How to present the evidence for consumers: preparation of consumer publications. Canberra: Commonwealth of AustraliaGoogle Scholar
- 32.Australian Bureau of Statistics (2012) Year Book Australia, 2012. Canberra: Australian Bureau of StatisticsGoogle Scholar
- 33.O’Connor A (1996) A Cranney User manual: Acceptability. https://decisionaid.ohri.ca/eval_accept.html.
- 36.Simard S, Savard J Screening and comorbidity of clinical levels of fear of cancer recurrence. J. Cancer Survivorship (in press)Google Scholar
- 39.Carlson LE (2016) Mindfulness-based interventions for coping with cancer. Ann N Y Acad Sci (in press)Google Scholar