Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer

Pyke‐Grimm, Kimberly A.; Franck, Linda S.; Kelly, Katherine Patterson; Halpern‐Felsher, Bonnie; Goldsby, Robert E.; Kleiman, Ari; Rehm, Roberta S.

doi:10.1188/19.onf.e22-e37

Cited by 10 publications

(22 citation statements)

References 53 publications

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“…In some cases, questions revealed limited knowledge of their cancer, treatment and its effects: all of which influence decision making. 12 What happens when treatment ends was a further knowledge gap. Lea et al refer to an ‘end‐of‐treatment’ transition process, as young people describe being unprepared for the unpredictable and on‐going nature of physical and psychological issues faced when treatment ends.…”

Section: Discussionmentioning

confidence: 99%

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

Fern

Phillips

Gravestock

et al. 2021

Health Expectations

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Objective We conducted a UK‐wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer. Design James Lind Alliance Priority Setting Partnership. Participants Young people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population. Methods Eight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis. Results The 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research. Conclusions The need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes. Patient/public contributions Patients and carers were equal stakeholders throughout.

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Section: Discussionmentioning

confidence: 99%

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

Fern

Phillips

Gravestock

et al. 2021

Health Expectations

View full text Add to dashboard Cite

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“…Research examining decisional processes among AYA is growing (Mack et al, 2019;Pyke-Grimm et al, 2019). Yet, previous attempts at characterizing factors important in decision-making among AYA have almost exclusively focused on social-cognitive domains as a central influencer of cancer-related decision-making (Pyke-Grimm et al, 2019). These include discussing the pros and cons of the decision at hand, presenting and discussing alternative options, if available, and acknowledging the values and preferences of AYA.…”

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confidence: 99%

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Adolescents and young adults (AYA; 15-25 years old) diagnosed with cancer are faced with making significant, cognitively, and emotionally laden cancer-related decisions from enrollment in therapeutic clinical trials to decisions associated with treatment such as pain and medication management, supportive care interventions, and goal pursuit (Barakat et al, 2014;Hart et al, 2020;Pyke-Grimm et al, 2019). Their role in the decisionmaking process is critical, as it allows decisions to reflect AYA values, preferences, and priorities for optimal treatment.

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confidence: 99%

“…In turn, this results in a struggle to fully understand or grasp information needed to engage with cancerrelated decisions (Zafar et al, 2009). On the contrary, effective communication and support of AYA engagement in decision-making from caregivers and oncology providers may facilitate cancer-related decision-making (Head & Iannarino, 2019;Pyke-Grimm et al, 2020).However, there remains a gap in our understanding of how best to support optimal decision-making among AYA.Research examining decisional processes among AYA is growing (Mack et al, 2019;Pyke-Grimm et al, 2019). Yet, previous attempts at characterizing factors important in decision-making among AYA have almost exclusively focused on social-cognitive domains as a central influencer of cancer-related decision-making (Pyke-Grimm et al, 2019).…”

mentioning

confidence: 99%

“…On the contrary, effective communication and support of AYA engagement in decision-making from caregivers and oncology providers may facilitate cancer-related decision-making (Head & Iannarino, 2019;Pyke-Grimm et al, 2020).However, there remains a gap in our understanding of how best to support optimal decision-making among AYA.Research examining decisional processes among AYA is growing (Mack et al, 2019;Pyke-Grimm et al, 2019). Yet, previous attempts at characterizing factors important in decision-making among AYA have almost exclusively focused on social-cognitive domains as a central influencer of cancer-related decision-making (Pyke-Grimm et al, 2019). These include discussing the pros and cons of the decision at hand, presenting and discussing alternative options, if available, and acknowledging the values and preferences of AYA.…”

mentioning

confidence: 99%

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Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers

et al. 2021

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Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider perspectives. Engagement in decision-making against the backdrop of normative developmental processes of acquiring autonomy and gaining independence contributes to the complexity of decision-making. Semi-structured qualitative interviews from 11 AYA and caregiver dyads and eight oncology providers examined decision-making processes with specific attention to the role of shared decision-making, cognitive and emotional processes, and coping with the decision-making experience. Five decision-making patterns were identified, with collaborative decision-making and AYA-driven decisions most commonly described. Utilizing hypothesis coding, AYA and caregivers explained how cognitive (i.e., pros/cons) and emotional (i.e., shock and fear of missing out) processes influenced cancer-related decisions. Coping strategies provided clarity and respite when engaged in decision-making. Our findings illuminate important implications for how to best support decision-making among AYA and caregivers, including the role oncology providers can play during decision-making.

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