Adolescent and Young Adult Cancer Patients’ Experiences With Treatment Decision-making

Abstract

BACKGROUND: Adolescents and young adults (AYAs) with cancer generally want to engage in decision-making but are not always able to do so. We evaluated cancer treatment decision-making among AYAs, including decisional engagement and regret. METHODS: We surveyed 203 AYA patients with cancer aged 15 to 29 (response rate 74%) treated at a large academic center and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report decision-making preferences and experiences (Decisional Roles Scale) and the extent to which they regretted their initial treatment decision (Decisional Regret Scale) assessed at baseline and 4 and 12 months later. RESULTS: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents. Although most AYAs held roles they preferred, those who did not reported holding more passive roles relative to oncologists (P < .0001) and parents (P = .002) than they desired. Nearly one-quarter of patients (24%; 47 of 195) experienced regret about initial cancer treatment decisions at baseline, with similar rates at 4 (23%) and 12 (19%) months. In a multivariable model adjusted for age, decisional roles were not associated with regret; instead, regret was less likely among patients who trusted oncologists completely (odds ratio 0.17 [95% confidence interval 0.06–0.46]; P < .001) and who reported that oncologists understood what was important to them when treatment started (odds ratio 0.13 [95% confidence interval 0.04–0.42]; P < .001). CONCLUSIONS: Nearly one-fourth of AYA patients expressed regret about initial treatment decisions. Although some AYAs have unmet needs for decisional engagement, attributes of the patient-oncologist relationship, including trust and mutual understanding, may be most protective against regret.

“Living life as if I never had cancer”: A study of the meaning of living well in adolescents and young adults who have experienced cancer

“…AYAs reported that a core component of decision making is their desire for oncologists to make time to understand their hopes, fears, and priorities—their personal definitions of living well. When this happens, oncologist‐patient relationships develop that enable AYAs to collaborate in the coproduction of their health through the joint creation of their health care plan 12 . AYAs also reported finding benefit from considering various options in the context of their personal goals and priorities 12 …”

Identification of adolescents and young adults’ preferences and priorities for future cancer treatment using a novel decision‐making tool

“…AYAs and PTPs in this pilot indicated a desire to have a more active role in decision making when compared to AYAs newly diagnosed with cancer 13 . This may be due to improved understanding of the nuances of the disease course and potential treatments that come with being on therapy for a longer time; AYAs in this study had a median time on therapy of 17 months.…”

“…[9][10][11][12] A recent study indicated most AYAs with newly diagnosed cancer preferred to make a decision in collaboration with their oncologist, while 20% wanted to hold the primary role in decision making. 13 When considering enrollment on a Phase 1 trial, 85% of AYAs report being the final decision maker. 14 Despite these findings, we are aware of no prior studies examining AYA preferences for treatment-related factors in advanced cancer.…”

“…Research examining the role AYAs desire in decision making throughout the disease course is growing 9–12 . A recent study indicated most AYAs with newly diagnosed cancer preferred to make a decision in collaboration with their oncologist, while 20% wanted to hold the primary role in decision making 13 . When considering enrollment on a Phase 1 trial, 85% of AYAs report being the final decision maker 14 .…”

Parent recommendation to bank sperm among at‐risk adolescent and young adult males with cancer

“…11 Despite valuing parenthood, 12 many adolescents do not bank sperm prior to initiation of gonadotoxic cancer treatment. 11,13 In the cancer setting, adolescents and young adults (AYA) often make medical decisions collaboratively with a parent, 14,15 and previous research indicates that parents have a critical role in AYAs' decision to bank sperm. [16][17][18] AYAs whose parents recommend sperm banking are over 12 times more likely to make a collection attempt relative to those whose parents do not.…”