Patient‐centered research to inform patient‐centered care for adolescents and young adults (AYAs) with cancer

The 2 studies of young adult cancer survivors highlighted in this issue of Cancer are exemplars of a body of survivorship research that has emerged since Mullan’s seminal article in the New England Journal of Medicine in 1985, which acknowledged a trajectory of survivorship that initiates at diagnosis and continues through extended phases of treatment and transitions into off-treatment survival. Both works evaluated patient-reported outcomes and thus provide insight into a patientcentered experience of cancer and its effect on the lives of adolescents and young adults (AYAs). Patient-centered perspectives on cancer survivorship are useful in informing the development of clinical care programs and research. They reflect the preferences, values, beliefs, and concerns of patients, which is knowledge necessary for equalizing the doctor–patient relationship, achieving shared decision-making, and perhaps contributing to a greater likelihood that patients will adopt provider instructions and adhere to and complete therapy. The studies by Salsman et al and Champion et al illuminate issues of particular relevance for an age-defined population of AYAs. Their findings are consistent with a small but emerging body of AYA survivorship literature and also stimulate thought related to methodological considerations for future AYA research. Existing evidence suggests that patients’ subjective experiences are better predictors of quality of life (QOL) outcomes relative to objective conditions. Few studies offer data to support the assertion that clinical characteristics such as cancer type or its associated severity or prognosis for survival explains variability in psychosocial outcomes. For example, a longitudinal study of 215 AYAs aged 15 to 39 years indicated that those with cancers that have 80% to 100% expected 5year survival rates (eg, testicular cancer, Hodgkin’s disease) were just as likely to report psychological distress at 1-year postdiagnosis as were those with worse 5-year survival rates. Thus, Salsman and colleagues had no a priori expectations for differences in outcomes by cancer type and were able to test a critical question related to time beyond end of therapy and its relationship to health-related QOL (HRQOL) in a large heterogeneous sample of AYAs. Given the relative rarity of cancer in teenagers and young adults, restricting studies of psychosocial outcomes to just 1 or 2 cancer types to control for presumed physiological effects related to cancer type unnecessarily burdens investigators. They require extended periods of time and/or large recruitment sources (multiple institutions or registries), and thus negatively affect the feasibility of conducting AYA trials with significant numbers of patients to test hypotheses. Findings from the study by Champion et al raise important issues related to sex, sexuality, and the interdependence of relationships, emotional health, and physical functioning. As adolescents and young adults enter into intimate, emotional, and sexual relationships, perhaps for the very first time, they do not expect illness. The words so often spoken at the altar of marriage or commitment, “In sickness and in health, until death do us part,” are rarely acknowledged by young people as a possibility as they consider other hopes and dreams for the future. Most AYAs, within the context of budding romances and new commitments, lack the skills necessary to navigate cancer and its challenges to relationships. Indeed, Champion et al reported impacts of cancer on mental health status, sexual functioning, physical functioning, and fatigue to be salient for AYAs, and significantly more so when compared to older patients with cancer. These factors are all interdependent and must be considered together when determining best approaches for supportive care; otherwise, interventions become piecemeal. For example, addressing sleep problems only by prescribing medication ignores attention to other known psychological or social correlates of sleep difficulties. Relying solely on pharmacological intervention for treating anxiety, depression, or adjustment disorders in patients with cancer, without considering psychotherapeutic options, flies in the face of evidence suggesting that psychotherapeutic and cognitive-behavioral interventions are