Engaging older patients with cancer and their caregivers as partners in cancer research

Abstract

Active patient partner engagement with Stakeholders for Care in Oncology and Research for our Elders board (a diverse group of older patients with cancer, caregivers of older patients with cancer, survivors, and patient advocates) to conduct what, to the authors' knowledge, is the largest randomized geriatric assessment clinical trial published to date has been shown to be feasible and to result in tangible and invaluable benefits for both the research team and patient partners alike. Actively engaging patient partners should be an essential component of the development, conduct, and completion of all clinical research.

Developing sustainable national infrastructure supporting high-impact research to improve the care of older adults with cancer: A Delphi investigation of geriatric oncology experts

“…• "We collected helpful information but recruitment was difficult." • Institutional support/buy-in from wider community • Lack of access to (pilot) data older adult patient advisory board [SCOREboard [12]]) will provide opportunities for mentorship/training and input from patient and caregiver stakeholders.…”

First person profile: Supriya G. Mohile, MD, MS

“…Her team enrolled 541 older adult patients with cancer and 414 caregivers in the study, known as the Communicating About Aging and Cancer Health (COACH) clinical trial. Several manuscripts have been published from the baseline data, and many of the articles list stakeholders as authors, including one in which the stakeholders describe their experiences working on the COACH trial …”

Multidisciplinary decision-making in older patients with cancer

“…This referral percentage would be similar or even higher with other commonly used frailty screening instruments in oncology, such as the G8, with reported positive scores ranging between 50-82%. 53,54 Despite the low referral rate in this study, there was a similar number of recommended treatment modifications compared to previous studies implementing GA. 42 Of the proposed treatment alterations, 76% were adopted by the treating physician and the patients. An oncological MDT is an advisory board and the final treatment decision is made between the treating physician and the patient (and family).…”

“…52 When designing and conducting research, patients and their caregivers and other stakeholders should be actively engaged. 53 This is relevant for older patients with cancer, but also for older patients facing other intensive treatments.…”

“…52 Verder is het van belang patiënten, hun naasten en andere stakeholders een actieve rol te geven bij het bedenken en tijdens het uitvoeren van wetenschappelijk onderzoek. 53 Bovengenoemde punten zijn van belang voor ouderen met kanker, maar zijn net zo relevant voor ouderen die voor een behandelbesluit ten aanzien van een andere aandoening staan.…”