Research projects

Development and trial of tailored psycho-educational resources for individuals affected by melanoma

Principal researchers

Dr Nadine Kasparian1
Dr Jordana McLoone1
A/Professor Bettina Meiser1
Professor Scott Menzies2
Professor Graham Mann 3, 4
Professor Phyllis Butow5
Associate Professor Kris Barlow 6
Dr Margaret Charles7

Institution

1 University of New South Wales
2 Sydney Melanoma Diagnostic Centre, Royal Prince Alfred Hospital Sydney Medical School, the University of Sydney
3 Westmead Institute for Cancer Research, Westmead Millennium Institute, and Melanoma Institute Australia
4 Sydney Medical School, the University of Sydney
5 Centre for Medical Psychology and Evidence- based Decision-making, The University of Sydney
6 Centre for Genetics Education, Royal North Shore Hospital
7 School of Psychology, the University of Sydney

Funding

$142,500

Award type

Priority-driven Collaborative Cancer Research Scheme (PdCCRS)

Project completion year

2012

Project brief

Australia has the highest rate of melanoma in the world. Each year, more than 11,000 people are diagnosed with melanoma, costing the Australian community in excess of 30 million dollars and resulting in more than 1,850 deaths. Melanoma is also the most common cancer in young people aged 15 to 45 years.

The three aims of the study were to:

  1. identify the extent to which melanoma survivors experience emotional difficulties such as anxiety, depression and fear of cancer recurrence
  2. better understand the sun exposure, sun protection and skin examination practices of people at high- or moderate-risk of developing melanoma
  3. develop an educational resource (also called a psycho-educational intervention) specifically tailored to meet the needs of people with melanoma. Development of this resource was guided by the latest research (including the findings of this study), as well as extensive consultations with experts in melanoma care and research, and melanoma patients and their families.

Methods

Study 1

A comprehensive survey instrument was developed to address aims 1 and 2. This survey assessed a range of demographic, medical, psychological and social factors.

The study comprised two groups of participants. Group 1 included melanoma survivors at high risk of developing a new melanoma due to multiple previous melanomas or a previous melanoma and dysplastic naevus syndrome (DNS). Group 2 included people at moderate risk due to one previous melanoma and no DNS. Participants were identified through the High Risk Clinic at the Sydney Melanoma Diagnostic Centre (Group 1) or the Melanoma Institute Australia (Group 2), the world's largest clinical service dedicated to the treatment of melanoma.

Study 2

To address aim 3, a tailored educational resource, also called a psycho-educational intervention, was developed to address the information and support needs of people with melanoma. The educational resource was then pilot tested with melanoma survivors at high- and moderate-risk of melanoma, as well as health professionals from a range of specialties (e.g. psychology, dermatology, epidemiology, public health, genetics, genetic counselling and nursing). The resource was then modified to incorporate the feedback received.

Key findings for Study 1

A total of 286 melanoma survivors took part in Study 1, exceeding the study recruitment target of 280. The mean age of the sample was 59.1 years (50=12.9 years), 58 per cent of participants in the total sample were men, 79 per cent were married, most (87 per cent) had children and approximately one-third (34 per cent) had completed a university degree.

Almost three-quarters of the sample (71 per cent) reported levels of fear of cancer recurrence potentially indicating the need for clinical intervention. In terms of general psychological health, 25 per cent and nine per cent of participants reported elevated levels of anxiety and depression respectively, potentially indicating the need for clinical care. No differences in psychological health were found between high-risk and moderate-risk groups.

More than half (54 per cent) of the high-risk group and 65 per cent of the moderate-risk group reported feeling anxious, worried or upset before dermatological appointments. Fifty-five per cent of participants in both groups reported feeling worried or anxious at least a few hours prior to these consultations.

The most common coping responses used by participants when concerned about the possibility of developing another melanoma were: positive thinking, trying to understand what is causing concern and skin self-examination. The majority of participants believed it would be 'very' or 'extremely' useful to receive information about, and support for, melanoma at the time of diagnosis (89 per cent), during treatment (86 per cent), and during follow-up care (85 per cent). Participants in both the high (M=16.0, 5D=4.3) and moderate risk (M=16.3, 5D=4.4) groups reported relatively high levels of social support (out of a possible total of 20).

On average, participants reported engaging in thorough skin self-examination for growths or changes in spots or moles on all exposed and unexposed parts of the body 'every second month' (M=3.8, 50=1.8). Sixteen per cent of high risk participants and 24 per cent of moderate risk participants reporting performing thorough SSE on a weekly basis. This is representative of 'over-screening'. In contrast, 20 per cent of high risk participants and 24 per cent of moderate risk participants reported 'rarely' or 'never' performing SSE. This is representative of 'under screening'.

Only 'sometimes' did participants in the high-risk (M=2.9, 50=1.1) and moderate-risk (M=2.6, 50=1.2) groups engage in SSE with the assistance of a partner or mirror.
On average, high risk participants perceived themselves as having a 58 per cent chance (50=23.0) of developing another melanoma in the future, while the mean perceived risk reported by moderate risk participants was 51 per cent (50=21.4).

Key findings for Study 2

Melanoma and the blue giraffe: Your questions answered, is a 68-page, full colour, evidence-based, psycho-educational intervention comprised of a series of tailored resources. The intervention is comprised of three components:

  1. Psycho-educational melanoma resource kit
    This features comprehensive information on a range of topics identified as important to people with melanoma.
  2. Question prompt sheet
    A Question Prompt Sheet (QPS) is a structured list of questions that patients are encouraged to ask their doctor if they wish. Based on the researchers’ extensive history of work in the development of communication tools for people with cancer, a QPS is developed specifically for people with melanoma. The QPS addresses a range of issues, including diagnosis, prognosis, treatment options, risk of recurrence and new primary disease, follow-up care, genetic risk assessment, financial costs of clinical care, practical challenges, information provision, and psychosocial care.
  3. Tailored survivorship care plan
    This care plan (called 'How can I keep track of my care?') has been carefully crafted to provide patients with space to record various aspects of melanoma management, including: diagnosis, treatments, prognosis, skin biopsies, sentinel or lymph node biopsies, moles being monitored for change and recommended follow-up care, such as skin self-examinations and clinical skin examinations. Information about sun exposure and Vitamin D after a melanoma diagnosis is also provided, as previous studies have identified this as a common concern among melanoma survivors.

Practical outcomes

This study is the first to systematically examine psychological health (i.e. fear of cancer recurrence, anxiety and depression) in melanoma survivors at high risk of developing new primary disease, compared to those at moderate risk. It is also one of the first studies to identify the prevalence of, and barriers to, sun protection and skin examination in melanoma survivors at varying levels of risk. These data have directly informed the development of a series of innovative, evidence-based psycho-educational resources tailored to meet the information and support needs of melanoma patients in all risk groups.

Improving melanoma prevention and early detection rates through targeted information provision and support may reduce disease burden and possibly improve survival, with obvious economic, social and psychological benefits to the individuals, families and clinicians involved, as well as the community at large.

The results of this research have been presented at key local, national and international meetings, and manuscripts have been published in international, peer-reviewed journals.

References

Journal articles

1 Kasparian NA. Psychological stress and melanoma: Are we meeting our patients' psychological needs? Clinics in Dermatology. In press. Accepted 22 February 2011. Invited paper.

2 McLoone JK, Watts K, Menzies SW, Meiser B, Butow PN, Kasparian NA (Senior author). When the risks are high: Psychological adjustment among melanoma survivors at high risk of developing new primary disease. Qualitative Health Research. In press. Accepted 8 September 2011.

3 McLoone JK, Menzies SW, Meiser B, Mann GJ, Kasparian NA (Senior author). Psychological and psycho-educational interventions for people affected by melanoma: A systematic review. Psycho-Oncology. Accepted: 3 August 2012.

4 McLoone JK, Watts K, Menzies SW, Barlow-Stewart K, Mann GJ, Kasparian NA (Senior author). 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-Oncology. Accepted pending minor revisions: 2 June 2012.