Adolescents' preferences for treatment decisional involvement during their cancer

Abstract

BACKGROUND: This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement. METHODS: Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decisionmaking approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P <.001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance. CONCLUSIONS: Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others. Cancer 2015;121:4416-24.

Communication preferences of pediatric cancer patients: talking about prognosis and their future life

“…These findings are in line with those from other areas of cancer-related communication research, including participation of adolescent patients in discussion about informed consent and medical decision making [23], and children/adolescent patient's wishes about communication regarding bad news [11]. Most participants valued open and honest communication with their healthcare providers, who were their most frequent source of health information.…”

Communication during childhood cancer: Systematic review of patient perspectives

“…24 Reassurance from clinicians, such as "holding my hand and telling me that it's almost over," 52 made treatment "less emotionally traumatic." 43 Continuity of care enabled participants to strengthen this patient-provider bond, feel understood and secure about speaking up, and motivated to adhere to treatment. 43 Continuity of care enabled participants to strengthen this patient-provider bond, feel understood and secure about speaking up, and motivated to adhere to treatment.…”

“…49 They appreciated clinicians who gauged their personal information and decision-making preferences first, without "bluntly telling everything." 43 Over time, some realized they wanted more information concerning prognosis and future quality of life, and to become more active in medical discussions. 43 Over time, some realized they wanted more information concerning prognosis and future quality of life, and to become more active in medical discussions.…”

“…Like, I know it when I see it and I hear it in their voice 43. That just makes me kind of comfortable with them… Avoid doctor talk or using real official doctor tone or doctor voice.…”

Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians

“…This includes understanding of the decision to be made, consequences of the decision, and participation in the complex process of evaluating risks to themselves and others . Importantly, adolescents want to be actively involved in decisions about their care, yet preferences for how they are included varies both by patient and over the course of an individual patient's treatment . Patients are not the only ones to benefit; clinicians and parents report greater satisfaction when adolescent oncology patients share preferences and participate in decision‐making discussions …”