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Adolescents and young adults with cancer conversations following participation in an advance care planning video pilot

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Abstract

Purpose

Advance care planning (ACP) discussions can help adolescents and young adults (AYAs) communicate their preferences to their caregivers and clinical team, yet little is known about willingness to hold conversations, content, and evolution of care preferences. We aimed to assess change in care preferences and reasons for such changes over time and examine the reasons for engaging or not engaging in ACP discussions and content of these discussions among AYAs and their caregivers.

Methods

We conducted a pilot randomized controlled trial of a novel video-based ACP tool among AYA patients aged 18–39 with advanced cancer and their caregivers. Participants were asked their care preferences at baseline, after viewing the video or hearing verbal description (post questionnaire), and again 3 months later. Three-month phone calls also queried if any ACP conversations occurred since the initial study visit. Study team notes from these phone calls were evaluated using content analysis.

Results

Forty-five AYAs and 40 caregivers completed the 3-month follow-up. Nearly half of AYAs and caregivers changed their care preference from post questionnaire to 3-month follow-up. Increased reflection and learning on the topic (n = 45) prompted preference change, with participants often noting the nuanced and context-specific nature of these decisions (n = 20). Most AYAs (60%) and caregivers (65%) engaged in ACP conversation(s), often with a family member. Disease-related factors (n = 8), study participation (n = 8), and a desire for shared understanding (n = 6) were common reasons for initiating discussions. Barriers included disease status (n = 14) and timing (n = 12). ACP discussions focused on both specific wishes for treatment (n = 26) and general conversations about goals and values (n = 18).

Conclusion

AYAs and caregivers acknowledged the complexity of ACP decisions, identifying obstacles and aids for these discussions. Clinicians should support a personalized approach to ACP that captures these nuances, promoting ACP as an iterative, longitudinal, and collaborative process.

Trial registration

This trial was registered 10/31/2019 with ClinicalTrials.gov (Identifier: NCT0414907).

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References

  1. Snaman JM et al (2017) Palliative care involvement is associated with less intensive end-of-life care in adolescent and young adult oncology patients. J Palliat Med 20(5):509–516

    Article  PubMed  Google Scholar 

  2. Mack JW et al (2015) High intensity of end-of-life care among adolescent and young adult cancer patients in the New York State Medicaid Program. Med Care 53(12):1018–1026

    Article  PubMed  PubMed Central  Google Scholar 

  3. Mack JW et al (2015) End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California. JAMA Oncol 1(5):592–600

    Article  PubMed  PubMed Central  Google Scholar 

  4. Lyon ME et al (2013) Family-centered advance care planning for teens with cancer. JAMA Pediatr 167(5):460–467

    Article  PubMed  Google Scholar 

  5. Wiener L et al (2012) Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 130(5):897–905

    Article  PubMed  PubMed Central  Google Scholar 

  6. Mack JW et al (2021) Patient, family, and clinician perspectives on end-of-life care quality domains and candidate indicators for adolescents and young adults with cancer. JAMA Netw Open 4(8):e2121888

    Article  PubMed  PubMed Central  Google Scholar 

  7. Fladeboe KM et al (2021) A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: a feasibility and acceptability cohort study. Cancer 127(23):4504–4511

    Article  PubMed  Google Scholar 

  8. Wiener L et al (2008) How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med 11(10):1309–1313

    Article  PubMed  PubMed Central  Google Scholar 

  9. Lyon ME et al (2014) A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality. J Adolesc Health 54(6):710–717

    Article  PubMed  Google Scholar 

  10. Carr K et al (2021) Factors associated with health professionals decision to initiate paediatric advance care planning: a systematic integrative review. Palliat Med 35(3):503–528

    Article  PubMed  Google Scholar 

  11. Pyke-Grimm KA et al (2019) Treatment decision-making involvement in adolescents and young adults with cancer. Oncol Nurs Forum 46(1):E22–E37

    PubMed  PubMed Central  Google Scholar 

  12. Weaver MS et al (2015) Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer 121(24):4416–4424

    Article  PubMed  Google Scholar 

  13. Pyke-Grimm KA et al (2020) 3 dimensions of treatment decision making in adolescents and young adults with cancer. Cancer Nurs 43(6):436–445

    Article  PubMed  PubMed Central  Google Scholar 

  14. Sisk BA et al (2019) Ethical issues in the care of adolescent and young adult oncology patients. Pediatr Blood Cancer 66(5):e27608

    Article  PubMed  Google Scholar 

  15. Weaver MS et al (2016) “Being a good patient” during times of illness as defined by adolescent patients with cancer. Cancer 122(14):2224–2233

    Article  PubMed  Google Scholar 

  16. Jacobs S et al (2015) Adolescent end of life preferences and congruence with their parents’ preferences: results of a survey of adolescents with cancer. Pediatr Blood Cancer 62(4):710–714

    Article  PubMed  Google Scholar 

  17. Snaman JM et al (2023) A pilot randomized trial of an advance care planning video decision support tool for adolescents and young adults with advanced cancer. J Natl Compr Canc Netw 21(7):715-723 e17

    Article  PubMed  Google Scholar 

  18. Krippendorff K (2018) Content analysis: an introduction to its methodology. SAGE Publications, India

  19. Bengtsson M (2016) How to plan and perform a qualitative study using content analysis. NursingPlus Open 2:8–14

    Article  Google Scholar 

  20. VERBI Software (2021) MAXQDA 2022 [computer software]. VERBI Software, Berlin, Germany. Available from maxqda.com

  21. Janssen DJA et al (2012) Predicting changes in preferences for life-sustaining treatment among patients with advanced chronic organ failure. Chest 141(5):1251–1259

    Article  PubMed  Google Scholar 

  22. Mukamel DB, Ladd H, Temkin-Greener H (2013) Stability of cardiopulmonary resuscitation and do-not-resuscitate orders among long-term nursing home residents. Med Care 51(8):666–672

    Article  PubMed  PubMed Central  Google Scholar 

  23. Wittink MN et al (2008) Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study. Arch Intern Med 168(19):2125–2130

    Article  PubMed  PubMed Central  Google Scholar 

  24. Rosenberg LB, Greenwald JL, Jacobsen JC (2019) To prepare patients better: reimagining advance care planning. Am Fam Physician 99(5):278–280

    PubMed  Google Scholar 

  25. Rosenberg AR et al (2020) Now, more than ever, is the time for early and frequent advance care planning. J Clin Oncol 38(26):2956–2959

    Article  PubMed  PubMed Central  Google Scholar 

  26. Sudore RL, Fried TR (2010) Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med 153(4):256–261

    Article  PubMed  PubMed Central  Google Scholar 

  27. McMahan RD, Tellez I, Sudore RL (2021) Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc 69(1):234–244

    Article  PubMed  Google Scholar 

  28. Song MK, Metzger M, Ward SE (2017) Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients. Palliat Med 31(3):267–274

    Article  PubMed  Google Scholar 

  29. Bedoya SZ et al (2022) Adolescent and young adult initiated discussions of advance care planning: family member, friend and health care provider perspectives. Front Psychol 13:871042

    Article  PubMed  PubMed Central  Google Scholar 

  30. Morgan B, Tarbi E (2019) Behavioral economics: applying defaults, social norms, and nudges to supercharge advance care planning interventions. J Pain Symptom Manage 58(4):e7–e9

    Article  PubMed  PubMed Central  Google Scholar 

  31. Wiener L et al (2022) Voicing their choices: advance care planning with adolescents and young adults with cancer and other serious conditions. Palliat Support Care 20(4):462–470

    Article  PubMed  PubMed Central  Google Scholar 

  32. Billings JA, Bernacki R (2014) Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Intern Med 174(4):620–624

    Article  PubMed  Google Scholar 

  33. van Dyck LI et al (2021) Understanding the role of knowledge in advance care planning engagement. J Pain Symptom Manage 62(4):778–784

    Article  PubMed  PubMed Central  Google Scholar 

  34. Rosa WE et al (2023) Advance care planning in serious illness: a narrative review. J Pain Symptom Manage 65(1):e63–e78

    Article  PubMed  Google Scholar 

  35. Periyakoil VS et al (2022) Caught in a loop with advance care planning and advance directives: how to move forward? J Palliat Med 25(3):355–360

    Article  PubMed  PubMed Central  Google Scholar 

  36. Sudore RL et al (2017) Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 53(5):821-832 e1

    Article  PubMed  PubMed Central  Google Scholar 

  37. Sisk BA et al (2020) Emotional communication in advanced pediatric cancer conversations. J Pain Symptom Manage 59(4):808-817 e2

    Article  PubMed  Google Scholar 

  38. Rosenberg AR et al (2016) Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: a review. JAMA Pediatr 170(12):1216–1223

    Article  PubMed  PubMed Central  Google Scholar 

  39. Tessier S (2012) From field notes, to transcripts, to tape recordings: evolution or combination? Int J Qual Methods 11(4):446–460

    Article  Google Scholar 

  40. Carr D (2012) Racial and ethnic differences in advance care planning: identifying subgroup patterns and obstacles. J Aging Health 24(6):923–947

    Article  PubMed  Google Scholar 

  41. de Vries K et al (2019) Advance care planning for older people: the influence of ethnicity, religiosity, spirituality and health literacy. Nurs Ethics 26(7–8):1946–1954

    Article  PubMed  Google Scholar 

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Funding

This project was supported by the National Institute of Health National Cancer Institute grant 1R21CA234708-01A1 (MPI: Volandes; Wolfe).

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Authors and Affiliations

  1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA

    Deborah Feifer, Gabrielle Helton & Jennifer M. Snaman

  2. Doctor of Medicine Program, Emory School of Medicine, Atlanta, GA, USA

    Deborah Feifer

  3. Doctor of Medicine Program, University of Colorado School of Medicine, Aurora, CO, USA

    Gabrielle Helton

  4. MassGeneral for Children, Boston, MA, USA

    Joanne Wolfe

  5. Massachusetts General Hospital, Boston, MA, USA

    Angelo Volandes

  6. Department of Pediatrics, Harvard Medical School, Boston, MA, USA

    Jennifer M. Snaman

Authors
  1. Deborah Feifer
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  2. Gabrielle Helton
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  3. Joanne Wolfe
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  4. Angelo Volandes
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  5. Jennifer M. Snaman
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Contributions

All authors contributed to the study conception and design. Material preparation was performed by Angelo Volandes, Joanne Wolfe and Jennifer Snaman. Data collection was performed by Gabrielle Helton, Deborah Feifer, and Jennifer Snaman. Data analysis was performed by Deborah Feifer and Jennifer Snaman, and Deborah Feifer wrote the first draft of the manuscript. All authors edited previous versions of the manuscript, and read and approved the final manuscript.

Corresponding author

Correspondence to Jennifer M. Snaman.

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Ethical approval

This study was performed in line with the principles of the Declaration of Helsinki and was approved by the Institutional Review Board at DFCI and registered with ClinicalTrials.gov (Identifier: NCT0414907).

Competing interests

Dr. Volandes is a co-founder of and receives income from ACP Decisions, a nonprofit foundation developing the advance care planning video decision support tools that was evaluated in this study. No other authors have disclosures or conflicts of interests.

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Feifer, D., Helton, G., Wolfe, J. et al. Adolescents and young adults with cancer conversations following participation in an advance care planning video pilot. Support Care Cancer 32, 164 (2024). https://doi.org/10.1007/s00520-024-08372-y

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