'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

Problem Identification Proton Beam Therapy (PBT) is an advanced form of radiotherapy, yet little evidence exists on patient experience to inform decision making and improve future care. We thematically synthesized the qualitative evidence of patient and caregivers’ perceptions and experiences of PBT. Literature Search Five electronic databases were systematically searched, using Medical Subject Headings (MeSH) terms and keywords. Two reviewers independently screened search results for qualitative studies relating to patients’ and caregivers’ experiences of PBT. The search generated 4,020 records, of which nine were eligible. Study quality (assessed by CASP checklist) varied. Data Synthesis Qualitative results were analyzed using thematic synthesis. Three main themes were generated: decision making and perceptions, living in the PBT “bubble,” and coping with the cancer treatment journey. Conclusions PBT is not yet widely accessible worldwide, which uniquely influences the patient experience. Our review uncovers areas PBT providers could target to improve patient-centered care; however, additional primary qualitative research is recommended