PURPOSE: Fear of cancer recurrence is highly prevalent among adult survivors of cancer. The role of fear of recurrence in the emotional distress of survivors of cancer, as well as health behaviors that may directly affect their health, remains unclear. To advance oncology practice, this study sought to examine the extent to which fear of recurrence stemming from physical symptoms accounts for emotional distress in a large sample of adult survivors of cancer and to extend the model to explain postdiagnosis self-reported health behavior change. METHODS: In 2016, 258 survivors of cancer at an academic hospital completed a survey of psychosocial needs. Items assessed physical symptoms (checklist), fear of cancer recurrence (Assessment of Survivor Concerns), emotional distress (anxiety and depressed mood), and health behaviors (current alcohol use, physical activity, diet, and sunscreen use, as well as changes after cancer diagnosis) informed by National Comprehensive Cancer Network survivorship guidelines. Indirect effects regression models accounting for relevant covariates (age and treatment history) used 5,000-iteration bootstrapping. RESULTS: Higher fear of cancer recurrence was associated with greater number of physical symptoms ( P < .001), greater emotional distress ( P < .05), lower moderate or vigorous physical activity ( P < .05), higher sunscreen use ( P < .05), and postdiagnosis increases in alcohol use ( P < .01) and reductions in physical activity ( P < .01). Fear of cancer recurrence models accounted for almost half of the variance in distress of survivors of cancer ( R2 = 0.44, P < .001) and, to a lesser yet significant extent, changes in alcohol consumption ( R2 = 0.09, P < .001) and physical activity ( R2 = 0.06, P = .003). CONCLUSION: Fear of cancer recurrence plays a central role in the emotional distress and key health behaviors of survivors of cancer. These findings support fear of cancer recurrence as a potential target for emotional health and health behavior change interventions.

OBJECTIVES: Transmasculine individuals, those assigned female sex at birth but who identify as masculine, have high rates of suicidal behavior and often suffer from chest dysphoria (discomfort and distress from unwanted breast development). Growing numbers of transmasculine youth are pursuing definitive treatment with masculinizing chest surgery (MCS), and adult studies reveal marked benefits of MCS, although little is known about the impact of chest dysphoria on transmasculine youth or the optimal timing of MCS. In this study, we aimed to explore youth experiences of chest dysphoria and the impact of MCS. METHODS: Transmasculine youth aged 13 to 21 were recruited from a pediatric hospital–based gender clinic. Participants completed a semistructured qualitative interview exploring the experience of chest dysphoria and thoughts about or experiences with MCS. Interview transcripts were coded by 3 investigators employing modified grounded theory, with the median interrater reliability at κ = 0.92. RESULTS: Subjects (N = 30) were a mean age of 17.5 years, and 47% had undergone MCS. Youth reported that chest dysphoria triggered strong negative emotions and suicidal ideation, caused a myriad of functional limitations, and was inadequately relieved by testosterone therapy alone. All post-MCS youth reported near or total resolution of chest dysphoria, lack of regret, and improved quality of life and functioning. CONCLUSIONS: We observed consensus that chest dysphoria is a major source of distress and can be functionally disabling to transmasculine youth. MCS performed during adolescence, including before age 18, can alleviate suffering and improve functioning. Additional research is needed to develop patient-reported outcome measures to assess the impact of chest dysphoria and MCS.

Background Patients with malignant gliomas have a poor prognosis. However, little is known about patients’ and caregivers’ understanding of the prognosis and the primary treatment goal. Methods We conducted a prospective study in patients with newly diagnosed malignant gliomas (N = 72) and their caregivers (N = 55). At 12 weeks after diagnosis, we administered the Prognosis and Treatment Perceptions Questionnaire to assess understanding of prognosis and the Hospital Anxiety and Depression Scale to evaluate mood. We used multivariable regression analyses to explore associations between prognostic understanding and mood and McNemar tests to compare prognostic perceptions among patient-caregiver dyads (N = 48). Results A total of 87.1% (61/70) of patients and 79.6% (43/54) of caregivers reported that it was “very” or “extremely” important to know about the patient’s prognosis. The majority of patients (72.7%, [48/66]) reported that their cancer was curable. Patients who reported that their illness was incurable had greater depressive symptoms (B = 3.01, 95% CI, 0.89-5.14, P = .01). There was no association between caregivers’ prognostic understanding and mood. Among patient-caregiver dyads, patients were more likely than caregivers to report that their primary treatment goal was cure (43.8% [21/48] vs 25.0% [12/48], P = .04) and that the oncologist’s primary goal was cure (29.2% [14/48] vs 8.3% [4/48], P = .02). Conclusions Patients with malignant gliomas frequently hold inaccurate perceptions of the prognosis and treatment goal. Although caregivers more often report an accurate assessment of these metrics, many still report an overly optimistic perception of prognosis. Interventions are needed to enhance prognostic communication and to help patients cope with the associated distress.

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Background Oncology research increasingly involves biospecimen collection and data sharing. Ethical challenges emerge when researchers seek to use archived biospecimens for purposes that were not well defined in the original informed consent document (ICD). We sought to inform ongoing policy debates by assessing patient views on these issues. Materials and Methods We administered a cross‐sectional self‐administered survey to patients with cancer at an academic medical center. Survey questions addressed attitudes toward cancer research, willingness to donate biospecimens, expectations regarding use of biospecimens, and preferences regarding specific ethical dilemmas. Results Among 240 participants (response rate 69%), virtually all (94%) indicated willingness to donate tissue for research. Most participants (86%) expected that donated tissue would be used for any research deemed scientifically important, and virtually all (94%) expected that the privacy of their health information would be protected. Broad use of stored biospecimens and data sharing with other researchers increased willingness to donate tissue. For three scenarios in which specific consent for proposed biobank research was unclear within the ICD, a majority of patient's favored allowing the research to proceed: 76% to study a different cancer, 88% to study both inherited (germline) and tumor specific (somatic) mutations, and 70% to permit data sharing. A substantial minority believed that research using stored biospecimens should only proceed with specific consent. Conclusion When debates arise over appropriate use of archived biospecimens, the interests of the research participants in seeing productive use of their blood or tissue should be considered, in addition to addressing concerns about potential risks and lack of specific consent. Implications for Practice This survey evaluated views of patients with cancer regarding the permissible use of stored biospecimens from cancer trials when modern scientific methods are not well described in the original informed consent document. The vast majority of patients support translational research and expect that any biospecimens they donate will be used to advance knowledge. When researchers, policy makers, and those charged with research oversight debate use of stored biospecimens, it is important to recognize that research participants have an interest in productive use of their blood, tissue, or data, in addition to considerations of risks and the adequacy of documented consent.

The characterization of patients as having few needs, predominantly physical needs, predominantly psychological needs, or substantial needs that are both physical and psychological provides a productive framework for clinical care of cancer survivors and to guide further research in this field. Further research is needed to define the tailored information and services appropriate for each group of patients and to define optimal screening tools to efficiently identify the needs of individuals in oncology practice.

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