The healthcare experience of solid rare cancer patients and their healthcare professionals: quantitative results from the eortc qol rare cancer study

Patients with solid rare cancers experience diagnostic delays, limited access to treatment, and fragmentations in care. This study examined the relevance of existing questionnaires of European Organisation of Research and Treatment for Cancer (EORTC) Quality of Life Group (QLG) focusing on healthcare factors (communication, information, and satisfaction with care) from the perspectives of solid rare cancer patients and healthcare professionals (HCPs). This is a quantitative analysis from the EORTC QLG QoL Rare Cancer study. Participants completed three questionnaires on a 4-point Likert scale for relevance (EORTC QLQ-COMU26, EORTC QLQ-INFO25, and EORTC PATSAT-C33) and indicated the 10 most relevant items across all questionnaires. Descriptive statistics were performed for the overall cohort and European Reference Network for Solid Rare Tumours (EURACAN) domains. Exploratory comparisons by disease and treatment type used chi-square or Fisher’s exact tests, as appropriate. A total of 142 patients and 78 HCPs were included. Patients rated questions as “very relevant” for mutual trust (76%) (EORTC QLQ-COMU26), information whether feeling their disease is under control (75%) (EORTC QLQ-INFO25), and the attention doctors gave to individual patient’s physical symptoms (67%) (EORTC PATSAT-C33). For HCPs, questions regarding usage of comprehensible language (68%) (EORTC QLQ-COMU26), information regarding the possible side-effects of treatment (86%) (EORTC QLQ-INFO25), and information given on medical tests and treatment (68%) (EORTC PATSAT-C33) were “very relevant”. The most frequent question in the top 10 most relevant items for all questionnaires was information about the diagnosis of their disease (patients, n = 70; 49%), and information about the medical treatment (HCPs, n = 41; 51%). EORTC questionnaires capture relevant healthcare experience aspects for solid rare cancer, though patients and HCPs showed different prioritisation patterns. Available qualitative data capturing more in-depth needs will inform future developments for lacking areas. Developing a concise and tailored instrument for measuring patients’ healthcare experiences could enhance clinical utility and capture what is truly relevant.