Objective: Precision cancer medicine (PCM) aims at identifying tumor-driving molecular characteristics to improve therapy. Despite early successes for some cancers, the approach faces manifold challenges. Patients undergoing extensive molecular diagnostics (MD) may hope for personal benefit, although chances are small. In order to offer suitable support to this group, health-care professionals need to gain insight into patients' experience. Thus, this study sought to explore the expectations of cancer patients undergoing MD of their tumor.Methods: In two German Comprehensive Cancer Centers, 30 patients with advanced-stage cancer who had exhausted conventional treatment and had consented to extensive, research-oriented MD (whole-genome sequencing n = 24, panel sequencing n = 6) participated in semi-structured interviews. Following thematic content analysis by Kuckartz, the interview transcripts were coded for expectations of MD participation and topics closely related. Moreover, patients completed questionnaires on their sociodemographic characteristics, medical history, and psychosocial distress.Results: Patients reported to be expecting (a) an improvement of their treatment, (b) a contribution to research, and/or (c) additional insight to their own cancer. Further, they described to feel individually appreciated and to have a reason to maintain hope for cure or recovery by participating in MD.Conclusions: Molecular diagnostics participation led patients to feel treated in a more "personalized" way, allowing them a greater sense of control in their situation of severe illness. Oncologists and psycho-oncologists need to ensure comprehensive information and empathetic support for patients undergoing extensive MD to balance their expectations and actual chances of clinical benefit.
K E Y W O R D Scancer, oncology, hope, palliative care, precision medicine, psycho-oncology, qualitative research, whole-genome sequencing Ute Goerling and Peter Herschbach are joint senior authors.
Background
The supporting role of caregivers is crucial to cancer patients’ care and well‐being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers’ experiences and information needs in hospital context.
Aim
Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital.
Design
A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three‐step process.
Setting/participants
The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed.
Results
Caregivers’ needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers’ life, hospital processes and transition back home.
Conclusion
Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research.
Team meetings, supervision, tailored education, and structural improvements may aid healthcare professionals to develop and implement ways to further support patients and caregivers. Also, patients' and caregivers' support needs should be screened regularly, e.g., when treatment phases change. This would complement healthcare professionals' subjective theories of relevant needs during a specific treatment phase.
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