Top

Published in:

Open Access 31-07-2023 | Melanoma

Supportive care needs in Australian melanoma patients and caregivers: results from a quantitative cross-sectional survey

Authors: Jake R. Thompson, Hong Fu, Robyn P. M. Saw, Kerry A. Sherman, Victoria Beedle, Victoria Atkinson, Frances Boyle, Niamh A. O’Sullivan, Linda K. Martin, Iris Bartula

Published in: Quality of Life Research | Issue 12/2023

Abstract

Purpose

This study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the basis for improving services.

Methods

General and melanoma-related supportive care needs in melanoma patients were measured using the SCNS-SF34 and SCNS-M12 respectively, whereas caregivers completed the SCNS-P&C. Patients also completed the MCQ-28 and FCRI-9, with all participants completing the QLQ-C30, DASS-21, and questions measuring utilisation and preference for supportive health services. Multivariable stepwise logistic regression was used to identify variables associated with unmet needs in melanoma patients.

Results

A total of 56 early-stage patients, 100 advanced-stage patients, and 37 caregivers participated. At least three-quarters (\(\ge\) 75%) of each participant group reported at least one unmet need. Of the ten most reported unmet needs in each participant group, at least six (\(\ge\) 60%) were related to psychological and emotional well-being, with access to a psychologist the most desired service (> 25%). Fear of cancer recurrence was equally prevalent in both patient groups at a level indicative of need for intervention. Advanced-stage patients reported significantly (p < 0.05) more unmet psychological, physical and daily living, and sexuality needs, and significantly (p < 0.05) worse functioning than early-stage patients.

Conclusion

Australian melanoma patients and caregivers report substantial unmet supportive care needs, particularly regarding their psychological and emotional well-being. Psychological and emotional well-being services, such as access to a clinical psychologist or implementation of patient-reported outcome measures, should be incorporated into routine melanoma care to address unmet patient and caregiver needs and improve well-being.

Available only for authorised users

Saginala, K., Barsouk, A., Aluru, J. S., Rawla, P., & Barsouk, A. (2021). Epidemiology of melanoma. Medical Sciences, 9(4), e63. https://doi.org/10.3390/medsci9040063CrossRef

Ferlay, J., Ervik, M., Lam, F., Colombet, M., Mery, L., Pineros, M., Znaor, A., Soerjomataram, I., & Bray, F. (2020). Global Cancer Observatory: Cancer today. International Agency for Research on Cancer. Retrieved December 12, 2022, from https://gco.iarc.fr/today

Austrlian Institute of Health and Welfare. (2022). Cancer data in Australia. Retrieved January 23, 2023, from https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia

Hunkin, H., Pollock, K., & Scupham, R. (2020). The National SunSmart Schools Program: Impact on sun protection policies and practices in Australian primary schools. Health Promotion Journal of Australia, 31(2), 251–257. https://doi.org/10.1002/hpja.291CrossRefPubMed

Melanoma Institute Australia, Melanoma Patients Australia. (2022). State of the nation—A report into melanoma. Retrieved February 6, 2023, from https://melanoma.org.au/news/state-of-the-nation/

Ochoa, C. Y., Lunsford, N. B., & Smith, J. L. (2020). Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life. Palliative & Supportive Care, 18(2), 220–240. https://doi.org/10.1017/S1478951519000622CrossRef

Kamminga, N. C. W., van der Veldt, A. A. M., Joosen, M. C. W., de Joode, K., Joosse, A., Grunhagen, D. J., Nijsten, T. E. C., Wakkee, M., & Lugtenberg, M. (2022). Experiences of resuming life after immunotherapy and associated survivorship care needs: A qualitative study among patients with metastatic melanoma. British Journal of Dermatology, 187(3), 381–391. https://doi.org/10.1111/bjd.21670CrossRefPubMed

Fraterman, I., Glaser, S. L. C., Wilgenhof, S., Medlock, S. K., Mallo, H. A., Cornet, R., van de Poll-Franse, L. V., & Boekhout, A. H. (2022). Exploring supportive care and information needs through a proposed eHealth application among melanoma patients undergoing systematic therapy: A qualitative study. Supportive Care in Cancer, 30, 7249–7260. https://doi.org/10.1007/s00520-022-07133-zCrossRefPubMedPubMedCentral

Stamataki, Z., Brunton, L., Lorigan, P., Green, A. C., Newton-Bishop, J., & Molassiotis, A. (2014). Assessing the impact of diagnosis and the related supportive care needs in patients with cutaneous melanoma. Supportive Care in Cancer, 23, 779–789. https://doi.org/10.1007/s00520-014-2414-xCrossRefPubMed

10.

Williamson, T. J., Jorge-Miller, A., McCannel, T. A., Beran, T. M., & Stanton, A. L. (2018). Sociodemographic, medical, and psychosocial factors associated with supportive care needs in adults diagnosed with uveal melanoma. JAMA Ophthalmology, 136(4), 356–363. https://doi.org/10.1001/jamaophthalmol.2018.0019CrossRefPubMedPubMedCentral

11.

Fu, H., Teleni, L., Crichton, M., & Chan, R. J. (2022). Supportive care and unmet needs in patients with melanoma: A mixed-methods systematic review. Supportive Care in Cancer, 28(8), 3489–3501. https://doi.org/10.1007/s00520-020-05464-3CrossRef

12.

Beesley, V. L., Smithers, B. M., Khosrotehrani, K., Khatun, M., O’Rourke, P., Hughes, M. C. B., Malt, M. K., Zonta, M. J., Bayley, G. J., Barbour, A. P., Brown, L. J., D’Arcy, J., Allan, C. P., & Green, A. C. (2015). Supportive care needs, anxiety, depression and quality of life amongst newly diagnosed patients with localised invasive cutaneous melanoma in Queensland, Australia. Psycho-Oncology, 24(7), 763–770. https://doi.org/10.1002/pon.3718CrossRefPubMed

13.

Beesley, V. L., Smithers, B. M., O’Rourke, P., Janda, M., Khosrotehrani, K., & Green, A. C. (2017). Variations in supportive care needs of patients after diagnosis of localised cutaneous melanoma: A 2-year follow-up study. Supportive Care in Cancer, 25, 93–102. https://doi.org/10.1007/s00520-016-3378-9CrossRefPubMed

14.

White, K., D’Abrew, N., Katris, P., O’Connor, M., & Emery, L. (2011). Mapping the psychosocial and practical support needs of cancer patients in Western Australia. European Journal of Cancer Care, 21(2), 107–116. https://doi.org/10.1111/j.1365-2354.2011.01270.xCrossRefPubMed

15.

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-Oncology, 22(9), 1994–2000. https://doi.org/10.1002/pon.3243CrossRefPubMed

16.

Mitchell, J., Callaghan, P., Street, J., Neuhaus, S., & Bessen, T. (2014). The experience of melanoma follow-up care: An online survey of patients in Australia. Journal of Skin Cancer. https://doi.org/10.1155/2014/429149CrossRefPubMedPubMedCentral

17.

Fox, J. A., Langbecker, D., Rosenberg, J., & Ekberg, S. (2019). Uncertain diagnosis and prognosis in advanced melanoma: A qualitative study of the experiences of bereaved carers in a time of immune and targeted therapies. British Journal of Dermatology, 180(6), 1368–1376. https://doi.org/10.1111/bjd.17511CrossRefPubMed

18.

Milne, D., Hyatt, A., Billett, A., Gough, K., & Krishnasamy, M. (2020). Exploring the experiences of people treated with immunotherapies for advanced melanoma and those caring for them: “Real-world” data. Cancer Nursing, 43(2), e97–e104. https://doi.org/10.1097/NCC.0000000000000683CrossRefPubMed

19.

Gershenwald, J. E., Scolyer, R. A., Hess, K. R., Sondak, V. K., Long, G. V., Ross, M. I., Lazar, A. J., Faries, M. B., Kirkwood, J. M., McArthur, G. A., Haydu, L. E., Eggermont, A. M. M., Flaherty, K. T., Balch, C. M., & Thompson, J. F. (2017). Melanoma staging: Evidence‐based changes in the American Joint Committee on Cancer eighth edition cancer staging manual. CA: A Cancer Journal for Clinicians, 67(6), 472–492. https://doi.org/10.3322/caac.21409

20.

von Elm, E., Altman, D. G., Egger, M., Pocock, S. J., Gøtzsche, P. C., & Vandenbroucke, J. P. (2007). The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. Annals of Internal Medicine, 147(8), 573–577.CrossRef

21.

Vandenbroucke, J. P., Elm, E. V., Altman, D. G., Gotzsche, P. C., Mulrow, C. D., Pocock, S. J., Poole, C., Schlesselman, J. J., & Egger, M. (2007). Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): Explanation and elaboration. Annals of Internal Medicine, 147(8), 163–194. https://doi.org/10.7326/0003-4819-147-8-200710160-00010-w1CrossRef

22.

Boyes, A., Girgis, A., & Lecathelinais, C. (2009). Brief assessment of adult cancer patients’ perceived needs: Development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). Journal of Evaluation in Clinical Practice, 15(4), 602–606. https://doi.org/10.1111/j.1365-2753.2008.01057.xCrossRefPubMed

23.

McElduff, P., Boyes, A., Zucca, A., & Girgis, A. (2014). Supportive care needs survey: A guide to administration, scoring and analysis. University of Newcastle: Centre for Health Research & Psycho-Oncology. Retrieved November 7, 2022, from https://www.researchgate.net

24.

Bonevski, B., Sanson-Fisher, R., Hersey, P., Paul, C., & Foot, G. (1999). Assessing the perceived needs of patients attending an outpatient melanoma clinic. Journal of Psychosocial Oncology, 17(3–4), 101–118. https://doi.org/10.1300/J077v17n03_06CrossRef

25.

Girgis, A., Lambert, S., & Lecathelinais, C. (2011). The supportive care needs survey for partners and caregivers of cancer survivors: Development and psychometric evaluation. Psycho-Oncology, 20(4), 387–393. https://doi.org/10.1002/pon.1740CrossRefPubMed

26.

Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., Filiberti, A., Flechtner, H., Fleishman, S. B., de Haes, J. C. J. M., Kaasa, S., Klee, M., Osoba, D., Razavi, D., Rofe, P. B., Schraub, S., Sneeuw, K., Sullivan, M., & Takeda, F. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. JNCI: Journal of the National Cancer Institute, 85(5), 365–376. https://doi.org/10.1093/jnci/85.5.365

27.

Chernyshov, P. V., Lallas, A., Tomas-Aragones, L., Arenbergerova, M., Samini, M., Manolache, L., Scensson, A., Marron, S. E., Sampogna, F., Spikkekom-vanKoulil, S., Bewley, A., Forsea, A. M., Jemec, G. B., Szepietowski, J. C., Augustin, M., & Finlay, A. Y. (2019). Quality of life measurement in skin cancer patients: Literature review and position paper of the European Academy of Dermatology and Venereology task forces on quality of life and patient oriented outcomes, melanoma and non-melanoma skin cancer. Journal of the European Academy of Dermatology and Venereology, 33(5), 816–827. https://doi.org/10.1111/jdv.15487CrossRefPubMed

28.

Winstanley, J., White, E., Saw, R., Young, T., Burmesiter, B., Nikolic, D., Busto-Cornide, I., Iglesias-Pena, N., & Boyle, F. (2020). Development of the Melanoma Concerns Questionnaire (MCQ-28); Refinement of the EORTC QLQ-MEL38 module. Psycho-Oncology, 29(2), 321–330. https://doi.org/10.1002/pon.5251CrossRefPubMed

29.

Simard, S., & Savard, J. (2009). Fear of Cancer Recurrence Inventory: Development and initial validation of a multidimensional measure of fear of cancer recurrence. Supportive Care in Cancer, 17(3), 241–251. https://doi.org/10.1007/s00520-008-0444-yCrossRefPubMed

30.

Lovibond, S. H., & Lovibond, P. F. (1996). Manual for the depression anxiety stress scales (2nd ed.). Psychology Foundation of Australia.

31.

Miniotti, M., Zeneli, A., Bassino, S., Pavan, S., Ribero, S., & Leombruni, P. (2020). Psychometric assessment of the Italian version of the melanoma module (SCNS-M12-Ita) of the Supportive Care Needs Survey (SCNS-SF34). Tumori Journal, 106(2), 101–108. https://doi.org/10.1177/0300891619868284CrossRefPubMed

32.

Luckett, T., King, M. T., Butow, P. N., Oguchi, M., Rankin, N., Price, M. A., Hackl, N. A., & Heading, G. (2011). Choosing between the EORTC QLQ-C30 and FACT-G for measuring health-related quality of life in cancer clinical research: Issues, evidence and recommendations. Annals of Oncology, 22(10), 2179–2190. https://doi.org/10.1093/annonc/mdq721CrossRefPubMed

33.

Lebel, S., Simard, S., Harris, C., Feldstain, A., Beattie, S., McCallum, M., Lefebvre, M., Savard, J., & Devins, G. M. (2016). Empirical validation of the English version of the Fear of Cancer Recurrence Inventory. Quality of Life Research, 25(2), 311–321. https://doi.org/10.1007/s11136-015-1088-2CrossRefPubMed

34.

Simard, S., & Savard, J. (2015). Screening and comorbidity of clinical levels of fear of cancer recurrence. Journal of Cancer Survivorship, 9(3), 481–491. https://doi.org/10.1007/s11764-015-0424-4CrossRefPubMed

35.

Fardell, J. E., Jones, G., Smith, A. B., Lebel, S., Thewes, B., Costa, D., Tiller, K., Simard, S., Feldstain, A., Beattie, S., & McCallum, M. (2018). Exploring the screening capacity of the Fear of Cancer Recurrence Inventory-Short Form for clinical levels of fear of cancer recurrence. Psycho-Oncology, 27(2), 492–499. https://doi.org/10.1002/pon.4516CrossRefPubMed

36.

SPSS Inc. (2019). IBM SPSS statistics for windows. Version 26.0. IBM Corp.

37.

Lisy, K., Langdon, L., Piper, A., & Jefford, M. (2019). Identifying the most prevalent unmet needs of cancer survivors in Australia: A systematic review. Asia-Pacific Journal of Clinical Oncology, 15(5), e68–e78. https://doi.org/10.1111/ajco.13176CrossRefPubMed

38.

Boyes, A. W., Girgis, A., D’Este, C., & Zucca, A. C. (2012). Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: A population-based cross-sectional study. BMC Cancer, 12, 1–10. https://doi.org/10.1186/1471-2407-12-150CrossRef

39.

Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19(10), 1013–1025. https://doi.org/10.1002/pon.1670CrossRefPubMed

40.

Lipworth, W., Prest, A., & Grainger, D. (2021). Cancer survivorship in Australia. Retrieved January 29, 2023, from https://www.bms.com/assets/bms/australia/documents/cancer-survivorship-whitepaper-2021.pdf

41.

Mamoor, M., Postow, M. A., Lavery, J. A., Baxi, S. S., Khan, N., Mao, J. J., Rogak, L. J., Sidlow, R., Thom, B., Wolchok, J. A., & Korenstein, D. (2020). Quality of life in long-term survivors of advanced melanoma treated with checkpoint inhibitors. Journal for Immunotherapy of Cancer, 8(1), e000260. https://doi.org/10.1136/jitc-2019-000260CrossRefPubMedPubMedCentral

42.

Lai-Kwon, J., Kelly, B., Lane, S., Biviano, R., Bartula, I., Brennan, F., Kivikoski, I., Thompson, J., Dhillon, H. M., Menzies, A., & Long, G. V. (2022). Feasibility, acceptability, and utility of a nurse-led survivorship program for people with metastatic melanoma (MELCARE). Supportive Care in Cancer, 30(11), 9587–9596. https://doi.org/10.1007/s00520-022-07360-4CrossRefPubMedPubMedCentral

43.

Grant Connect (2023). Current grant opportunity—GO6122. Retrieved March 3, 2023, from https://www.grants.gov.au/

44.

Almutairi, A. R., McBride, A., Slack, M., Erstad, B. L., & Abraham, I. (2020). Potential immune-related adverse events associated with monotherapy and combination therapy of ipilimumab, nivolumab, and pembrolizumab for advanced melanoma: A systematic review and meta-analysis. Frontiers in Oncology, 10, e91. https://doi.org/10.3389/fonc.2020.00091CrossRef

45.

Dieng, M., Butow, P. N., Costa, D., Morton, R. L., Menzies, S. W., Mireskandari, S., Tesson, S., Mann, G. J., Cust, A. E., & Kasparian, N. A. (2016). Psychoeducational intervention to reduce fear of cancer recurrence in people at high risk of developing another primary melanoma: Results of a randomized controlled trial. Journal of Clinical Oncology, 34(36), 4405–4414. https://doi.org/10.1200/JCO.2016.68.2278CrossRefPubMed

46.

Thompson, J. R., Smith, A. L., Lo, S. N., Kasparian, N. A., Saw, R. P. M., Dieng, M., Seaman, L., Martin, L. K., Guitera, P., Milne, D., Schmid, H., Cust, A. E., & Bartula, I. (2022). Protocol for the implementation of a stepped-care model to address fear of cancer recurrence in patients previously diagnosed with early-stage (0–II) melanoma. BMJ Open, 12(3), e054337. https://doi.org/10.1136/bmjopen-2021-054337CrossRefPubMedPubMedCentral

47.

Kotronoulas, G., Connaghan, J., Grenfell, J., Gupta, G., Smith, L., Simpson, M., & Maguire, R. (2017). Employing patient-reported outcome (PRO) measures to support newly diagnosed patients with melanoma: Feasibility and acceptability of a holistic needs assessment intervention. European Journal of Oncology Nursing, 31, 59–68. https://doi.org/10.1016/j.ejon.2017.10.002CrossRefPubMed

48.

Robinson, J. K., Gaber, R., Hultgren, B., Eilers, S., Blatt, H., Stapleton, J., Mallett, K., Turrisi, R., Duffecy, J., Begale, M., Martini, M., Bilimoria, K., & Wayne, J. (2014). Skin self-examination education for early detection of melanoma: A randomized controlled trial of Internet, workbook, and in-person interventions. Journal of Medical Internet Research, 16(1), e2883. https://doi.org/10.2196/jmir.2883CrossRef

49.

Skovlund, P. C., Vind Thaysen, H., Schmidt, H., Alsner, J., Hjollund, N. H., Lomborg, K., & Nielsen, B. K. (2021). Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: A clinical, controlled trial. Acta Oncologica, 60(12), 1668–1677. https://doi.org/10.1080/0284186X.2021.1962972CrossRefPubMed

50.

Fox, J., Janda, M., Bennett, F., & Langbecker, D. (2019). An outreach telephone program for advanced melanoma supportive care: Acceptability and feasibility. European Journal of Oncology Nursing, 42, 110–115. https://doi.org/10.1016/j.ejon.2019.08.010CrossRefPubMed

51.

Dempsey, K., Saw, R., Bartula, I., Lo, S., Lawn, C., Pennington, T., Spillane, A., Boyle, F., Dong, S., Dieng, M., Milne, D., Seaman, L., Saks, D., Lai-Kwon, J., Thompson, J. R., & Morton, R. (2022). Protocol: Embedding electronic patient-reported outcome measures into routine care for patients with stage III MELanoma (ePROMs-MEL): Protocol for a prospective, longitudinal, mixed-methods pilot study. BMJ Open, 12(12), e066852. https://doi.org/10.1136/bmjopen-2022-066852CrossRefPubMedPubMedCentral

52.

Stiefel, F., Barth, J., Bensing, J., Fallowfield, L., Jost, L., Razavi, D., & Kiss, A. (2010). Communication skills training in oncology: A position paper based on a consensus meeting among European experts in 2009. Annals of Oncology, 21(2), 204–207. https://doi.org/10.1093/annonc/mdp564CrossRefPubMed

53.

Butow, P., Cockburn, J., Girgis, A., Bowman, D., Schofield, P., D’Este, C., Stojanovski, E., & Tattersall, M. H. N. (2007). Increasing oncologists’ skills in eliciting and responding to emotional cues: Evaluation of a communication skills training program. Psycho-Onocology, 17(3), 209–218. https://doi.org/10.1002/pon.1217CrossRef

54.

Cancer Council Australia Melanoma Guidelines Working Party. (2012). Clinical practice guidelines for the diagnosis and management of melanoma. Retrieved June 21, 2023, from https://wiki.cancer.org.au/australia/Guidelines:Melanoma

55.

Australian Bureau of Statistics. (2022). National study of mental health and wellbeing. Retrieved February 23, 2023, from https://abs.gov.au/statistics/health/mental-health/national-study-mental-health-and-wellbeing/latest-release

Title: Supportive care needs in Australian melanoma patients and caregivers: results from a quantitative cross-sectional survey
Authors: Jake R. Thompson
Hong Fu
Robyn P. M. Saw
Kerry A. Sherman
Victoria Beedle
Victoria Atkinson
Frances Boyle
Niamh A. O’Sullivan
Linda K. Martin
Iris Bartula
Publication date: 31-07-2023
Publisher: Springer International Publishing
Keywords: Melanoma
Melanoma
Care
Anxiety
Published in: Quality of Life Research / Issue 12/2023
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-023-03492-0

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Supportive care needs in Australian melanoma patients and caregivers: results from a quantitative cross-sectional survey

Abstract

Purpose

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

Please log in to get access to this content

Other articles of this Issue 12/2023

Impaired health-related quality of life in the HCV cure era: who is concerned? (ANRS CO22 HEPATHER French cohort)

A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults

Change in health-related quality of life and functional disability over time post-concussion in youth

Translation and validation of a Chinese version of the pancreatitis quality of life instrument (PANQOLI) in patients with chronic pancreatitis

Validation of the bowel urgency numeric rating scale in patients with Crohn’s disease: results from a mixed methods study

Psychosocial factors associated with j-pouch surgery for patients with IBD: a scoping review