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“Melanoma: Questions and Answers.” Development and evaluation of a psycho-educational resource for people with a history of melanoma

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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Acknowledgments

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.

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Authors and Affiliations

  1. Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Sydney, NSW, 2052, Australia

    Nadine A. Kasparian & Shab Mireskandari

  2. Psycho-oncology Co-operative Research Group and the Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Sydney, NSW, 2006, Australia

    Phyllis N. Butow

  3. Cancer Epidemiology and Prevention Research, Sydney School of Public Health, The University of Sydney, Sydney, NSW, 2006, Australia

    Mbathio Dieng & Anne E. Cust

  4. Prince of Wales Clinical School, UNSW Medicine, The University of New South Wales, Sydney, NSW, 2052, Australia

    Bettina Meiser

  5. Discipline of Genetic Medicine, Sydney Medical School, University of Sydney at the Northern Clinical School, Royal North Shore Hospital, St Leonards, NSW, 2065, Australia

    Kristine Barlow-Stewart

  6. Discipline of Dermatology, Sydney Medical School, The University of Sydney at The Sydney Melanoma Diagnostic Centre, Royal Prince Alfred Hospital, Camperdown, NSW, 2050, Australia

    Scott Menzies

  7. Centre for Cancer Research, The University of Sydney at The Westmead Institute for Medical Research and Melanoma Institute Australia, Sydney, NSW, 2145, Australia

    Graham J. Mann

  8. The Heart Centre for Children, The Children’s Hospital at Westmead, Westmead, NSW, 2145, Australia

    Nadine A. Kasparian

Authors
  1. Nadine A. Kasparian
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  2. Shab Mireskandari
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  3. Phyllis N. Butow
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  8. Scott Menzies
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  9. Graham J. Mann
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Corresponding author

Correspondence to Nadine A. Kasparian.

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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.

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Kasparian, N.A., Mireskandari, S., Butow, P.N. et al. “Melanoma: Questions and Answers.” Development and evaluation of a psycho-educational resource for people with a history of melanoma. Support Care Cancer 24, 4849–4859 (2016). https://doi.org/10.1007/s00520-016-3339-3

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  • DOI: https://doi.org/10.1007/s00520-016-3339-3

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