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Certainty within uncertainty: a qualitative study of the experience of metastatic melanoma patients undergoing pembrolizumab immunotherapy

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Abstract

Objective

Little is known about the lived experiences of patients with metastatic melanoma undergoing checkpoint inhibitor treatment. We conducted a feasibility study of a supportive care intervention for melanoma patients being treated with pembrolizumab. Here, we report a secondary objective of the study, which was to explore the lived experience of being on pembrolizumab treatment for advanced melanoma.

Methods

Twenty-eight participants with metastatic melanoma were recruited across two cohorts, all receiving 3-weekly immunotherapy treatment. Semi-structured interviews were conducted with 26 participants once at 9 weeks. Thematic analysis using interpretative phenomenological analysis (IPA) was performed with multiple iterations of data review to achieve consensus.

Results

Three overarching themes were identified; here, we report the first and most dominant theme: how metastatic melanoma patients live within uncertain spaces. Although immunotherapy increases overall survival, metastatic melanoma patients live within an uncertain spectrum. They confront uncertainty related to immunotherapy treatment, their disease trajectory, family relationships, and decision-making. Melanoma patients attempt to normalize their lives, engaging in their usual activities. Uncertainty increases prior to active treatment and intensifies during investigation phases.

Conclusions

Despite progress in melanoma patient treatment and outcomes, these patients face sustained uncertainty about their disease trajectory.

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References

  1. Robert C, Schachter J, Long G, Arance A, Grob JJ, Mortier L, Daud A, Carlino MS, McNeil C, Lotem M, Larkin J, Lorigan P, Neyns B, Blank CU, Hamid O, Mateus C, Shapira-Frommer R, Kosh M, Zhou H, Ibrahim N, Ebbinghaus S, Ribas A, KEYNOTE-006 investigators (2015) Pembrolizumab versus ipilimumab in advanced melanoma. N Engl J Med 372(26):2521–2532

    Article  CAS  PubMed  Google Scholar 

  2. Larkin J, Minor D, D’Angelo S et al (2017) Overall survival in patients with advanced melanoma who received nivolumab versus investigator’s choice chemotherapy in checkMate 037: a randomized, controlled, open-label phase III trial. J Clin Oncol. https://doi.org/10.1200/JCO2016.71.8023

  3. Schadendorf D, Hodi FS, Robert C, Weber JS, Margolin K, Hamid O, Patt D, Chen TT, Berman DM, Wolchok JD (2015) Pooled analysis of long-term survival data from phase II and phase III trials of ipilimumab in unresectable or metastatic melanoma. J Clin Oncol 33(17):1889–U1848

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  4. Curl PK (2015) Navigating uncertainty: a valuable cost-effectiveness analysis in the rapidly changing field of metastatic melanoma treatment. Br J Dermatol 173(6):1365–1366

    Article  CAS  PubMed  Google Scholar 

  5. Hope-Stone LB, Stephen L, Heimann H, Damato B, Salmon P (2015) How do patients with uveal melanoma experience and manage uncertainty? A qualitative study. Psycho-Oncology 24(11):1485–1491

    Article  PubMed  Google Scholar 

  6. Karlsson M, Friberg F, Wallengren C, Ohlen J (2014) Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study. BMC Palliative Care 13(1):28–28

    Article  PubMed  PubMed Central  Google Scholar 

  7. Richardson A, Wagland R, Foster R, Symons J, Davis C, Boyland L, Foster C, Addington-Hall J (2015) Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study. BMJ Support Palliat Care 5(4):366–372

    Article  CAS  PubMed  Google Scholar 

  8. Lobb E, Lacey J, Kearsley J, Liauw W, White L, Hosie A (2015) Living with advanced cancer and an uncertain disease trajectory: an emerging patient population in palliative care? BMJ Support Palliat Care. 5(4):352–357

    Article  PubMed  Google Scholar 

  9. Lacey J, Lomax A, Marthick M et al (2017) A supportive care intervention for people with metastatic melanoma treated with immunotherapy: a pilot study assessing feasibility and perceived benefit. Asia-Pac J Clin Oncol 13:147–148

    Google Scholar 

  10. Association WM (2013) World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 310(20):2191–2194

    Article  CAS  Google Scholar 

  11. Smith JA, Flowers P, Larkin M (2009) Interpretative phenomenological analysis: theory, method and research. Sage Publications Ltd, London

    Google Scholar 

  12. Balmer C, Griffiths F, Dunn J (2015) A ‘new normal’: exploring the disruption of a poor prognostic cancer diagnosis using interviews and participant-produced photographs. Health 19(5):451–472

    Article  PubMed  Google Scholar 

  13. Mendes A (2015) Helping people living with cancer adjust to their ‘new normal’. Br J Community Nurs 20(8):411–411

    Article  PubMed  Google Scholar 

  14. Beach PR. Surviving after cancer: living the new normal. Vol 38. Pittsburgh: Oncology Nursing Soc; 2011:599–599

  15. Dean M (2016) “It’s not if I get cancer, it’s when I get cancer”: BRCA-positive patients’ (un)certain health experiences regarding hereditary breast and ovarian cancer risk. Soc Sci Med 163:21–27

    Article  PubMed  Google Scholar 

  16. Drageset SL, Christine T, Giske T, Underlid K (2016) Women’s experiences of social support during the first year following primary breast cancer surgery. Scand J Caring Sci 30(2):340–348

    Article  PubMed  Google Scholar 

  17. Inan FŞG, Partlak N, Üstün B (2016) Experiences of newly diagnosed breast cancer patients in Turkey. J Transcult Nurs 27(3):262–269

    Article  PubMed  Google Scholar 

  18. Cayless SF, Liz, Illingworth N, Hubbard G, Kearney N (2010) Men with prostate cancer over the first year of illness: their experiences as biographical disruption. Support Care Cancer 18(1):11–19

    Article  PubMed  Google Scholar 

  19. Simard SS, Josée, Ivers H (2010) Fear of cancer recurrence: specific profiles and nature of intrusive thoughts. J Cancer Surviv 4(4):361–371

    Article  PubMed  Google Scholar 

  20. Etkind SN, Bristowe K, Bailey K, Selman LE, Murtagh FEM (2017) How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med 31(2):171–180

    Article  PubMed  Google Scholar 

  21. 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):1102–1113

    Article  PubMed  Google Scholar 

  22. Lebel S, Ozakinci G, Humphris G, Mutsaers B, Thewes B, Prins J, Dinkel A, Butow P (2016) From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Support Care Cancer 24(8):3265–3268

    Article  PubMed  Google Scholar 

  23. Simonelli LES, Scott D, Duffy NM (2016) Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management: fear of recurrence. Psycho-Oncology

  24. Mutsaers B, Jones G, Rutkowski N, Tomei C, Leclair S, Caroline, Petricone-Westwood D, Simard S, Lebel S (2016) When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence. Support Care Cancer 24(10):4207–4218

    Article  PubMed  Google Scholar 

  25. Grossmann KF, Margolin K (2015) Long-term survival as a treatment benchmark in melanoma: latest results and clinical implications, vol 7. SAGE Publications, London, pp 181–191

    Google Scholar 

  26. Ascierto PA, Long GV (2016) Progression-free survival landmark analysis: a critical endpoint in melanoma clinical trials. Lancet Oncol 17(8):1037–1039

    Article  PubMed  Google Scholar 

  27. Hajdarevic S, Rasmussen BH, Hornsten A (2014) You never know when your last day will come and your trip will be over--existential expressions from a melanoma diagnosis. Eur J Oncol Nurs 18(4):355–361

    Article  PubMed  Google Scholar 

  28. Beesley VL, Smithers BM, Khosrotehrani K, Khatun M, O’Rourke P, Hughes MCB, Malt MK, Zonta MJ, Bayley GJ, Barbour AP, Brown LJ, D’Arcy J, Allan CP, Green AC (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

    Article  PubMed  Google Scholar 

  29. Trusson D, Pilnick A, Roy S (2016) A new normal?: Women’s experiences of biographical disruption and liminality following treatment for early stage breast cancer. Soc Sci Med 151:121–129

    Article  PubMed  Google Scholar 

  30. Mishel MH (1988) Uncertainty in illness. Image 20(4):225–232

    CAS  Google Scholar 

  31. Blows E, Seymour J, Cox K (2013) Liminality as a framework for understanding experiences of long-term cancer survivorship. Psycho-Oncology 22:2155–2164

    Google Scholar 

  32. Little M, Jordens C, Paul K, Montgomery K, Philipson B (1998) Liminality: a major category of the experience of cancer illness. Soc Sci Med 47(10):1485–1494

    Article  CAS  PubMed  Google Scholar 

  33. Gennep AV (1960) The rites of passage. Routledge & Kegan Paul, London

    Google Scholar 

  34. Turner VW (1967) The forest of symbols: aspects of Ndembu ritual. Cornell University Press, Ithaca

    Google Scholar 

  35. Turner VW (1969) The ritual process: structure and anti-structure. Vol 01/1969. MLA International Bibliography

  36. Koutri I, Avdi E (2016) The suspended self: liminality in breast cancer narratives and implications for counselling. 5(1):78–96

  37. Crouch M, McKenzie H (2006) The logic of small samples in interview-based qualitative research. Soc Sci Inf 45(4):483–499

    Article  Google Scholar 

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Acknowledgments

The authors would like to thank Corrinne Renton, Research Officer, Centre for Medical Psychology and Evidence-Based Decision-Making, Sydney Medical School, University of Sydney, for database design, management, and technical support; Theresa Nielsen for assistance with participant recruitment and coordination; Alex Pereira and Charlotte Davies for assistance with data entry; and Alison Sibley for administrative support and the supportive care and integrative oncology team at Chris O’Brien Lifehouse for clinical input.

Data ownership

The data generated as part of this study remains the property of the investigators. It is available for inspection on request.

Funding

This study was funded through an educational and research grant from MSD, administered through Chris O’Brien Lifehouse. Anna Lomax was supported by the Simon Kerr Fellowship.

Author information

Authors and Affiliations

  1. Chris O’Brien Lifehouse Comprehensive Cancer Centre, Missenden Rd, Camperdown, NSW, Australia

    David Levy, Anna Lomax, Michael Marthick, Catriona McNeil, Steven Kao & Judith Lacey

  2. Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology, University of Sydney, Sydney, NSW, Australia

    David Levy & Haryana M. Dhillon

  3. Sydney Medical School, University of Sydney, Sydney, NSW, Australia

    Catriona McNeil, Steven Kao & Judith Lacey

Authors
  1. David Levy
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  2. Haryana M. Dhillon
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  3. Anna Lomax
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  4. Michael Marthick
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  5. Catriona McNeil
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  6. Steven Kao
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  7. Judith Lacey
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Corresponding author

Correspondence to Judith Lacey.

Ethics declarations

Ethical approval was granted by Sydney Local Health District – Concord zone Human Research Ethics Committee (HREC/15/CRGH/265) in accordance with the Declaration of Helsinki

Conflict of interest

Catriona McNeil received travel, conference, and accommodation support from MSD; has sat on MSD advisory boards; and has given talks for MSD and BMS (honoraria to Chris O’Brien Lifehouse). Steven Kao received honoraria paid to his institution from Boeringher, Astrazeneca, Roche, Pfizer, BMS, and MSD. Steven Kao has had travel costs paid for by BMS, Roche, and AstraZeneca. Haryana Dhillon has received honoraria paid to her institution from MSD. Judith Lacey has received honoraria paid to her institution from TEVA and MSD.

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Levy, D., Dhillon, H.M., Lomax, A. et al. Certainty within uncertainty: a qualitative study of the experience of metastatic melanoma patients undergoing pembrolizumab immunotherapy. Support Care Cancer 27, 1845–1852 (2019). https://doi.org/10.1007/s00520-018-4443-3

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  • DOI: https://doi.org/10.1007/s00520-018-4443-3

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