A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: “plan, structure, and discuss”

Abstract

Background Including the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research. However, by including their lived experiences during multiple phases of research, the quality of the study improves and therefore also the healthcare and quality of life of this unique patient group. We first aimed to document experiences of AYAs and researchers with AYA involvement initiatives using the Involvement Matrix and the nine phases of the research cycle. Second, we aimed to map the (expected) challenges and recommendations, according to patients and researchers, for AYA involvement in each research phase. Methods Thirteen semi-structured qualitative interviews were conducted with AYAs and researchers from February 2020 to May 2020. A thematic analysis codebook with a critical realistic framework was used to analyze the data. Results AYAs and researchers were predominantly positive about AYA involvement within six of the nine phases of research: identify and prioritize topics, develop study design, disseminate information, implement, and evaluate findings. Not all respondents were positive about AYA involvement in the following three phases: formulate research questions, conduct research, and analysis and interpretation. However, few respondents had experience with AYA-researcher collaborations in multiple phases of the research cycle. Last, the results indicate the importance of adding a role (practical support) and two phases (grant application and recruitment) to the Involvement Matrix. Conclusion Our results show the added value of AYA (with a UPCP) involvement within scientific research projects. We recommend researchers to actively think about the level and phase of collaboration prior to each research project, by involving and brainstorming with AYAs at the conception and throughout research projects. Besides, to enhance fruitful participation, we suggest thoroughly discussing the pros and cons of collaboration for each phase together with AYAs via the proposed Involvement Matrix to support transparency. We recommend to report experiences, choices, and results of AYA involvement.

Reproductive Problems in Adolescent and Young Adult Gynecology Cancer Survivors: A Systematic Review

“…Adolescence and young adulthood are a period of transition from children to adults (Ferrari et al, 2021;Smith & Olsen, 2018). Adolescents and young adults are concerned about physical appearance and self-existence, construct their identity, develop body image and positive sexual identity, separate from their parents, develop their involvement with friends of the same age, date, and begin to make decisions and life choices (Broholm-Jørgensen et al, 2022;Ham et al, 2022).…”

“…Adolescents and young adults diagnosed with cancer at an advanced stage will experience early death from cancer because there is no hope of recovery, but they do not face the threat of death immediately after diagnosis or after completing active cancer therapy (Ham et al, 2022). The poor quality of the post-care phase in adolescents and young adulthood is one of which is counseling on reproductive health .…”

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

“…However, the reporting of experiences with patient engagement in research with the AYA cancer patient population is very limited. In 2022, van Ham et al conducted semi-structured qualitative interviews with researchers (n = 9) and AYA cancer patients (n = 3) on experiences with patient engagement in research in Denmark [11]. The authors reported practical findings including an adjusted involvement matrix based on nine phases of research and five roles for patient research partners (PRPs).…”

“…The authors reported practical findings including an adjusted involvement matrix based on nine phases of research and five roles for patient research partners (PRPs). 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].…”

Improving supportive, palliative and end of life care for teenagers and young adults with cancer in adult haematology services

“…Research into T/AYA clinical outcomes and experiences is challenging [13], even more so when seeking to directly capture the patient voice of those with advanced cancer due in part to unpredictable disease and symptom pattern and the increased psychological and emotional burden often seen in this cohort [14 ▪ ,15 ▪ ]. Small numbers mean studies tend not to focus on particular diagnostic groups.…”