Research involvement and engagement of adolescent and young adults in a cancer trajectory: a 5-year experience from a patient support facility at a university hospital

Abstract

Background The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016–2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported. Main body A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016–2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10–15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. Conclusion Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies

“…We aligned with these three phases for the development of our proposed framework. For phase 1, identifying evidence to inform the methodological framework, aside from our experiences with the FUTURE Study, we drew from the aforementioned works by van Ham et al and Pappot et al on conducting patient engaged research with AYAs [11,12] to identify gaps and opportunities in AYA cancer patient engagement. Given the methodologic and content focus of the FUTURE Study, we also drew from Sherriff et al's 2014 work on considerations on conducting focus groups to evaluate sexual health service inter-ventions for young people [15].…”

“…In their scoping review on patient engagement in Canada, Manafo et al found that when patients are engaged in research, there are improved research effectiveness and understanding of the community as well as increased enrolment and mobilisation of findings [16]. Patient engagement in cancer research has increased greatly over the last decade across many jurisdictions [3,5,12] and is of particular relevance for AYAs with lived experience of unique age-related challenges (e.g., sexual and reproductive health) [1,2,11,12].…”

“…Implications include creating awareness of the value of patient engagement in research at the individual level, advocating for training AYAs and researchers in this respect, and at the institutional level, calling for structural changes to support this approach [11]. In 2023, Pappot reported experiences with patient engagement in research with a panel of 10-15 AYAs spanning multiple studies over 5 years at a cancer support facility in Finland [12]. The authors learned that AYA cancer patients are willing to use their cancer lived experience in research and other co-creation projects.…”