Stakeholders' perceptions and information needs regarding research medical donation Journal Article
| Authors: | Epstein, A. S.; Hamilton, J. G.; Shuk, E.; Romano, D. R.; Lynch, K.; Khan, E.; Genoff, M.; Michael, C.; Iacobuzio-Donahue, C. |
| Article Title: | Stakeholders' perceptions and information needs regarding research medical donation |
| Abstract: | Context: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs. Objectives: The objective of this study was to generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities. Methods: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in eight teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised two groups. Each cancer separately had two groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes. Results: A total of 45 people (13 clinicians, 24 patients, eight caregivers) participated in the groups. The themes identified were as follows: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD. Conclusion: Patients, families, and cancer clinicians have generally low knowledge of RMD but, upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff. © 2019 American Academy of Hospice and Palliative Medicine |
| Keywords: | autopsy; focus groups; perceptions; knowledge; medical donation; stakeholders |
| Journal Title: | Journal of Pain and Symptom Management |
| Volume: | 58 |
| Issue: | 5 |
| ISSN: | 0885-3924 |
| Publisher: | Elsevier Inc. |
| Date Published: | 2019-11-01 |
| Start Page: | 792 |
| End Page: | 804.e6 |
| Language: | English |
| DOI: | 10.1016/j.jpainsymman.2019.07.003 |
| PUBMED: | 31302259 |
| PROVIDER: | scopus |
| PMCID: | PMC6853712 |
| DOI/URL: | |
| Notes: | Source: Scopus |
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