1. Stakeholder perspectives on addressing adverse events from adjuvant cancer therapy: A qualitative study
- Author
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Kristen Hassmiller Lich, Steven E. Lipshultz, Rebecca A. Kirch, Syril Pettit, Pamela Silberman, Ethan Basch, and Randall Teal
- Subjects
Cancer Research ,Health Personnel ,Population ,Patient advocacy ,Discipline ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,adjuvant ,Nursing ,Neoplasms ,Physicians ,Health care ,Adjuvant therapy ,Humans ,Medicine ,Relevance (information retrieval) ,030212 general & internal medicine ,education ,Qualitative Research ,education.field_of_study ,business.industry ,Stakeholder ,Original Articles ,3. Good health ,Caregivers ,Oncology ,Chemotherapy, Adjuvant ,Health Care Surveys ,030220 oncology & carcinogenesis ,Quality of Life ,adverse effects ,adverse events (AEs) ,Original Article ,business ,survivorship ,Qualitative research - Abstract
Background With increasing survival rates, a growing population of patients with cancer have received or will receive adjuvant therapy to prevent cancer recurrences. Patients and caregivers will confront the complexities of balancing the preventative benefits of adjuvant therapy with possible near‐term or long‐term adverse events (AEs). Adjuvant treatment–related AEs (from minimal to severe) can impact therapeutic adherence, quality of life, emotional and physical health, and survival. However, to the authors' knowledge, limited information is available regarding how stakeholders use or desire to use adjuvant‐related AE information to inform the care of patients with cancer. Methods A qualitative, purposeful sampling approach was used to elicit stakeholder feedback via semistructured interviews (24 interviews). Drug development, drug regulatory, clinical, payer, and patient/patient advocacy stakeholders were questioned about the generation, dissemination, and use of adjuvant treatment–related AE information to inform the care of patients with cancer. Transcripts were coded independently by 2 senior health care researchers and reconciled to identify key themes. Results All stakeholder groups in the current study identified needed improvements in each of the following 4 areas: 1) improving the accessibility and relevance of AE‐related information; 2) better integrating and implementing available information regarding AEs for decisions; 3) connecting contemporary cultural and economic value systems to the generation and use of information regarding adjuvant treatment–related AEs; and 4) addressing a lack of alignment and ownership of stakeholder efforts to improve the use of AE information in the adjuvant setting. Conclusions Despite commonalities in the overall needs identified by the diverse stakeholders in the current study, broad systemic change has been stymied. The current study identified the lack of alignment and the absence of a central “owner” of these diffuse efforts as a previously unrecognized hurdle to realizing the desired systemic improvements. Future initiatives aimed at improving quality of life and outcomes for patients receiving adjuvant therapy through the improved use of AE information must address this challenge through innovative collectives and novel leadership strategies., Navigating complex risk‐benefit tradeoffs in the adjuvant treatment setting requires robust and accessible information regarding treatment‐related adverse events. The current multistakeholder qualitative study identifies systemic challenges in the generation and use of information regarding adjuvant treatment–related adverse events to improve patient outcomes and quality of life.
- Published
- 2019