Supportive Care in Cancer

, Volume 24, Issue 12, pp 4849–4859 | Cite as

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

  • Nadine A. KasparianEmail author
  • Shab Mireskandari
  • Phyllis N. Butow
  • Mbathio Dieng
  • Anne E. Cust
  • Bettina Meiser
  • Kristine Barlow-Stewart
  • Scott Menzies
  • Graham J. Mann
Original Article



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.


Melanoma 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.

Ethical approval

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. 1.
    Australian Institute of Health and Welfare (AIHW) (2015) Australian Cancer Incidence and Mortality (ACIM) books: Melanoma of the skin. Canberra: AIHW.
  2. 2.
    Cancer Australia. Melanoma of the Skin in Australia (2015) Accessed January, 2016.
  3. 3.
    M. Tucker, A. Goldstein (2003) Melanoma etiology: where are we? Oncogene 22:3042–3052CrossRefPubMedGoogle Scholar
  4. 4.
    Hayward N (2003) Genetics of melanoma predisposition. Oncogene 22:3053–3062CrossRefPubMedGoogle Scholar
  5. 5.
    Whiteman D, Watt P, Purdie D, Hughes M, Hayward N, Green A (2003) Melanocytic nevi, solar keratoses, and divergent pathways to cutaneous melanoma. J Natl Cancer Inst 95(11):806–812CrossRefPubMedGoogle Scholar
  6. 6.
    Kefford R, Mann G (2003) Is there a role for genetic testing in patients with melanoma? Curr Opin Oncol 15:157–161CrossRefPubMedGoogle Scholar
  7. 7.
    Youlden DR, Youl PH, Soyer HP, Aitken JF, Baade PD (2014) Distribution of subsequent primary invasive melanomas following a first primary invasive or in situ melanoma Queensland, Australia, 1982-2010. JAMA Dermatol 150:526–534CrossRefPubMedGoogle Scholar
  8. 8.
    Bradford PT, Freedman DM, Goldstein AM, MA T (2010) Increased risk of second primary cancers after a diagnosis of melanoma. Arch Dermatol 146(3):265–272CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Doubrovsky A, Menzies S (2003) Enhanced survival in patients with multiple primary melanoma. Arch Dermatol 139:1013–1018CrossRefPubMedGoogle Scholar
  10. 10.
    Sollner W, Zingg-Schir M, Rumpold G, Mairinger G, Fritsch P (1998) Need for supportive counselling—the professionals’ versus the patients’ perspective: a survey in a representative sample of 236 melanoma patients. Psychother Psychosom 67(2):94–104CrossRefPubMedGoogle Scholar
  11. 11.
    McLoone J, Watts K, Menzies S, Meiser B, Butow P, Kasparian N (2012) When the risks are high: psychological adjustment among melanoma survivors at high risk of developing new primary disease. Qual Health Res 22(8):1102–1113CrossRefPubMedGoogle Scholar
  12. 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
  13. 13.
    Kasparian NA (2013) Psychological care for people with melanoma: what, when, why and how? Semin Oncol Nurs 29(3):214–222CrossRefPubMedGoogle Scholar
  14. 14.
    Schofield P, Carey M, Bonevski B, Sanson-Fisher R (2006) Barriers to the provision of evidence-based psychosocial care in oncology. Psycho-Oncol 15(10):863–872CrossRefGoogle Scholar
  15. 15.
    Loquai C, Scheurich V, Syring N, et al. (2013) Screening for distress in routine oncological care: a survey in 520 melanoma patients. PLoS One 8(7):e66800CrossRefPubMedPubMedCentralGoogle Scholar
  16. 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
  17. 17.
    Bares CB, Trask PC, Schwartz SM (2002) An exercise in cost-effectiveness analysis: treating emotional distress in melanoma patients. J Clin Psychol Med Settings 9(3):193–200CrossRefGoogle Scholar
  18. 18.
    McLoone J, Menzies S, Meiser B, Mann G, Kasparian N (2013) Psycho-educational interventions for people affected by melanoma: a systematic review. Psycho-Oncol 22:1444–1456CrossRefGoogle Scholar
  19. 19.
    Foot G, Sanson-Fisher R (1995) Measuring unmet needs of people living with cancer. Cancer Forum 19(2):131–135Google Scholar
  20. 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
  21. 21.
    Fallowfield L, Hall A, Maguire P, Baum M, A’Hern R (1994) Psychological effects of being offered choice of surgery for breast cancer. Br Med J 309:448CrossRefGoogle Scholar
  22. 22.
    Brandberg Y, Bergenmar M, Bolund C, Michelson H, et al. (1994) Information to patients with malignant melanoma: a randomized group study. Patient Educ Couns 23(2):97–105CrossRefPubMedGoogle Scholar
  23. 23.
    Kasparian NA, McLoone JK, Meiser B, Butow PN, Simpson JM, GJ M (2010) Skin cancer screening behaviours among individuals with a strong family history of malignant melanoma. Br J Cancer 103:1502–1509CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    McLoone J, Watts K, Menzies S, Barlow-Stewart K, Mann G, Kasparian N (2013) Melanoma survivors at high risk of developing new primary disease: a qualitative examination of the factors that contribute to patient satisfaction with clinical care. Psycho-Oncol 22(9):1994–2000CrossRefGoogle Scholar
  25. 25.
    Medical Research Council. Developing and evaluating complex interventions: new guidance. London: Medical Research Council;2006.Google Scholar
  26. 26.
    Lazarus R, Folkman S (1984) Stress, appraisal, and coping. Springer, New YorkGoogle Scholar
  27. 27.
    Folkman S (2010) Stress, coping and hope. Psycho-Oncol 19:901–908CrossRefGoogle Scholar
  28. 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. 29.
    National Health and Medical Research Council (2000) How to present the evidence for consumers: preparation of consumer publications. Canberra: Commonwealth of AustraliaGoogle Scholar
  30. 30.
    Dimoska A, Tattersall MH, Butow PN, Shepherd H, Kinnersley P (2008) Can a “prompt list” empower cancer patients to ask relevant questions? Cancer 113(2):225–237CrossRefPubMedGoogle Scholar
  31. 31.
    Kasparian N, Butow P, Meiser B, Mann G (2008) High- and average-risk individuals’ beliefs about, and perceptions of, malignant melanoma: an Australian perspective. Psycho-Oncol 17(3):270–279CrossRefGoogle Scholar
  32. 32.
    Australian Bureau of Statistics (2012) Year Book Australia, 2012. Canberra: Australian Bureau of StatisticsGoogle Scholar
  33. 33.
    O’Connor A (1996) A Cranney User manual: Acceptability.
  34. 34.
    Hodgkinson K, Butow P, Hunt G, et al. (2007) The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (cancer survivors’ unmet needs measure). Psycho-Oncol 16:796–804CrossRefGoogle Scholar
  35. 35.
    Simard S, Savard J (2009) Fear of cancer recurrence inventory: development and initial validation of a multidimensional measure of fear of cancer recurrence. Support Care Cancer 17(3):241–251CrossRefPubMedGoogle Scholar
  36. 36.
    Simard S, Savard J Screening and comorbidity of clinical levels of fear of cancer recurrence. J. Cancer Survivorship (in press)Google Scholar
  37. 37.
    Zigmond A, Snaith R (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67(6):361–370CrossRefPubMedGoogle Scholar
  38. 38.
    Khoo K, Bolt P, Babl FE, Jury S, Goldman RD (2008) Health information seeking by parents in the internet age. J Paediatr Child Health 44(7–8):419–423CrossRefPubMedGoogle Scholar
  39. 39.
    Carlson LE (2016) Mindfulness-based interventions for coping with cancer. Ann N Y Acad Sci (in press)Google Scholar
  40. 40.
    Janda M, Youl P, Neale R, et al. (2014) Clinical skin examination outcomes after a video-based behavioral intervention: analysis from a randomized clinical trial. JAMA Dermatol 150(4):372–379CrossRefPubMedGoogle Scholar
  41. 41.
    Djaja N, Youl P, Aitken J, Janda M (2014) Evaluation of a skin self-examination attitude scale using an item response theory model approach. Health Qual Life Outcomes 12:189CrossRefPubMedPubMedCentralGoogle Scholar
  42. 42.
    Dieng M, Kasparian NA, Butow PN, et al. (2015) Protocol of a randomised controlled trial of a psycho-educational intervention for melanoma survivors at high risk of developing new primary disease. BMC Psychol 3(1):23CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Nadine A. Kasparian
    • 1
    • 8
    Email author
  • Shab Mireskandari
    • 1
  • Phyllis N. Butow
    • 2
  • Mbathio Dieng
    • 3
  • Anne E. Cust
    • 3
  • Bettina Meiser
    • 4
  • Kristine Barlow-Stewart
    • 5
  • Scott Menzies
    • 6
  • Graham J. Mann
    • 7
  1. 1.Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW MedicineThe University of New South WalesSydneyAustralia
  2. 2.Psycho-oncology Co-operative Research Group and the Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of PsychologyThe University of SydneySydneyAustralia
  3. 3.Cancer Epidemiology and Prevention Research, Sydney School of Public HealthThe University of SydneySydneyAustralia
  4. 4.Prince of Wales Clinical School, UNSW MedicineThe University of New South WalesSydneyAustralia
  5. 5.Discipline of Genetic Medicine, Sydney Medical SchoolUniversity of Sydney at the Northern Clinical SchoolSt LeonardsAustralia
  6. 6.Discipline of Dermatology, Sydney Medical SchoolThe University of Sydney at The Sydney Melanoma Diagnostic Centre, Royal Prince Alfred HospitalCamperdownAustralia
  7. 7.Centre for Cancer ResearchThe University of Sydney at The Westmead Institute for Medical Research and Melanoma Institute AustraliaSydneyAustralia
  8. 8.The Heart Centre for ChildrenThe Children’s Hospital at WestmeadWestmeadAustralia

Personalised recommendations