Outcomes That Matter Most to Young Adults Diagnosed with Cancer: A Qualitative Study

Abstract

The purpose of this study is to provide insight for improvement in care for young adults diagnosed with cancer (YADC), by identifying underemphasized outcomes that strongly matter to YADC and the gaps in care that may limit achieving these outcomes for this unique and vulnerable population. Methods: Twenty-seven YADC, ages 25-39, participated in unstructured discussions focusing on topics relating to diagnosis, daily experiences living with cancer outside of the clinical setting, goals, concerns, and clinical care experience. Most participants engaged in group discussions using Experience Group methodology. Discussions were designed to collect information on three dimensions of health: capability, comfort, and calm (CCC). Data were coded using thematic analysis with NVivo software. Results: Several themes were identified within the CCC framework: capability in terms of confronting mortality at a young age, losing youthful identity and control over major life course decisions, especially fertility, and debilitating side effects, comfort in terms of the lack of understanding from peers and family and the fear of cancer recurrence, and calm was discussed as the difficulty of making complex medical decisions, financial toxicity, and loss of clinical support in survivorship. Conclusion: This research highlighted four care additions that are important for YADC: (1) concise and understandable education about their condition and treatment; (2) same-age support groups; (3) fertility support; and (4) better care transitions for life after cancer. These findings emphasize the importance of creating a collaborative, multidisciplinary care team and a holistic approach with care innovations that support clinicians to meet the unique needs of YADC.

Achieving Calm: A Study on the Health Care Experiences of People With Lived Experience of Homelessness in Central Texas

“…A qualitative descriptive research approach was chosen, given the advantages of open-ended questioning to evoke explanatory and culturally relevant responses (Taha, 2005). Specifically, we utilized a form of ethnographic research called experience groups (EGs), which encourages open discussion among patients who face similar health challenges (Guzik et al, 2021). EG sessions are designed to help researchers understand people's experiences inside and outside of clinical settings in order to clarify what health outcomes matter most to them and what obstacles or unmet needs prevent them from achieving those health outcomes (Teisberg et al, 2020).…”

“…It is important to note that calm is not the same as patient experience; it is an outcome of a good experience, not a process measure. This framework has been used to describe the health outcomes of many medically defined segments of patients (Guzik et al, 2021; Liu et al, 2017; Wallace, 2016). However, this framework can also be applied to individuals with shared life experiences, and thus can be used as potential design criteria for care delivery to populations with lived experience of homelessness.…”

Early-Onset Cancers in Adults: A Review of Epidemiology, Supportive Care Needs and Future Research Priorities

“…Factors that have been identified as relevant to patients regarding decisions around fertility preservation are prioritising parenthood, focusing on cancer treatment, fear of future regret, survivorship quality of life, concerns for having children in the future, cultural/social issues and fear of disease progression [ 64 ]. Female cancer patients in particular have associated infertility with a loss of purpose and an impact on their identity [ 65 , 66 ]. There is variation between patients regarding whether they place a higher value on the risk of infertility or treating the cancer and survival as their main concern [ 64 ].…”

Frühes Auftreten von Krebs bei Erwachsenen: Ein Überblick über Epidemiologie, Unterstützungsbedarf und zukünftige Forschungsprioritäten

“…Als Faktoren, die für die Patienten bei Entscheidungen über die Erhaltung der Fruchtbarkeit von Bedeutung sind, wurden die Priorisierung der Elternschaft, die Konzentration auf die Krebsbehandlung, die Angst vor zukünftigem Bedauern, die Lebensqualität nach dem Überleben, die Sorge, in Zukunft Kinder zu haben, kulturelle/soziale Fragen und die Angst vor dem Fortschreiten der Krankheit ermittelt [64]. Vor allem Krebspatientinnen haben Unfruchtbarkeit mit einem Verlust von Lebenssinn und einer Beeinträchtigung ihrer Identität in Verbindung gebracht [65, 66]. Es gibt Unterschiede zwischen den Patienten bezüglich der Frage, ob sie dem Risiko der Unfruchtbarkeit oder der Behandlung der Krebserkrankung und dem Überleben als Hauptanliegen mehr Bedeutung beimessen [64].…”