EP-1180: Public involvement in design of a phase III trial comparing IMPT and IMRT for oropharyngeal cancer

“I don’t want to hear statistics, I want real life stories”: Systematic review and thematic synthesis of patient and caregiver experiences of Proton Beam Therapy

“…Three studies obtained qualitative data through interviews (31,(33)(34)(35), four with focus-groups (32,36,38,39), and one study is a first-hand account (37). Sixty-one participants in four studies had gone through the PBT process, either as a patient (n=24; (34,35,36)) or parent of a patient aged under 18 (n=37; (31,33)), and 123 participants across four studies were patients and caregivers considering PBT as an alternative to traditional radiotherapy (32,36,38,39) (Table 3). Five studies were UK based (31-33, 36, 38), one was based in Sweden (34,35) and two in the US (37,39).…”

“…The quality of included studies varied, ranging between two and nine of the ten CASP criteria checklist items met (Table 4). The areas of low quality were: lack of author reflexivity (32, Head Runner: Patient and caregivers experiences of PBT V3.0 12102022 INCLUDING author details_CLEAN 9 33, 36, 38, 39), lack of credibility (32,(36)(37)(38) , no statement of aims (32,36,37) and poor evidence of rigour (32,(36)(37)(38). Two studies were found to be of particularly low quality, with no quotations to support analysis (32,38), yet were included due to relevance to the research question.…”

“…The areas of low quality were: lack of author reflexivity (32, Head Runner: Patient and caregivers experiences of PBT V3.0 12102022 INCLUDING author details_CLEAN 9 33, 36, 38, 39), lack of credibility (32,(36)(37)(38) , no statement of aims (32,36,37) and poor evidence of rigour (32,(36)(37)(38). Two studies were found to be of particularly low quality, with no quotations to support analysis (32,38), yet were included due to relevance to the research question. When extracting data, evidence from these lower-quality studies was corroborated and not given in isolation.…”

“…Eight studies (nine papers) were selected for final inclusion in the review. (31)(32)(33)(34)(35)(36)(37)(38)(39) No further relevant qualitative studies were identified after the search date, from database alerts or hand-searching. The PRISMA 2020 flowchart for study selection is presented in Figure 1.…”

“…All eight studies considered decision-making and perceptions of PBT treatment (31)(32)(33)(35)(36)(37)(38)(39).…”