A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study.

BACKGROUND: The objective of the study was to elaborate a conceptual framework related to the domains of patient experience along the cystic fibrosis (CF) journey from the patients and parents of children with CF to inform the design of a patient-reported experience questionnaire. METHOD: A collaborative research group including patients and parents with clinicians and academic researchers was set up. They identified the situations along the CF care pathway from diagnosis to paediatric care, transition to adult care and adult follow-up, transfer to transplant centres and follow-up after transplantation. Participants were recruited by CF centres in metropolitan France and overseas departments. Semi-structured interviews were conducted, transcribed verbatim and subjected to an inductive analysis conducted in duos of researchers/co-researchers using NVivo®. The conceptual framework was discussed with the research group and presented to the CF centres during two video conferences. The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888-no. 20-700). RESULTS: The analysis led to a conceptual framework composed of domains of the CF journey, each divided into several items. 1. CF care: Management of care by the CF centre team; in-hospital care; quality of care in the community; therapeutic education and self-management support; at-home care; new therapies and research; procreation; 2. Transplant care: management of transplant and CF care; coordination with other specialties; education and self-management support; at-home care; procreation; new therapies and research; 3. Turning points along the journey: diagnosis of CF, transition to adult care, transfer to transplantation; 4. Social life with CF: housing, employment and education, social relations, social welfare and family finances. The number of patients included and the diversity of situations made it possible to achieve a sufficient richness and saturation of codes by domain to develop patient experience questionnaires. CONCLUSION: This conceptual framework, resulting from the participants' experience, will inform the design of a patient-reported experience tool, whose construct will be tested during the next phase of the ExPaParM project to assess its fidelity, intelligibility, and ability to report patient experience of the CF journey.

Are there socio-economic inequities in access to reperfusion therapy: The stroke 69 cohort.

BACKGROUND AND PURPOSE: Low socio-economic status of individuals has been reported to be associated with a higher incidence of stroke and influence the diagnosis after revascularization. However, whether it is associated with poorer acute stroke management is less clear. To determine whether social deprivation was associated with a poorer access to reperfusion therapy, either intravenous thrombolysis (IVT) and/or endovascular thrombectomy (EVT) in a population-based cohort. METHODS: Over a 14-month period, all consecutive adult patients admitted to any emergency department or a comprehensive or primary stroke center (CSC/PSC) of the Rhône county with a confirmed ischemic stroke were included. The socioeconomic status of each patient was measured using the European Deprivation Index (EDI). The association between EDI and access to reperfusion therapy was assessed in univariate and multivariate logistic regression analyses. RESULTS: Among the 1226 consecutive IS patients, 316 (25%) were admitted directly in a PSC or CSC, 241 (19.7%) received a reperfusion therapy; 155 IVT alone, 20 EVT alone, and 66 both therapies. Median age was 79 years, 1030 patients had an EDI level of 1 to 4, and 196 an EDI of 5 (the most deprived group). The most deprived patients (EDI level 5) did not have a poorer access to reperfusion therapy compared to all other patients in univariate (OR 1.22, 95%CI [0.85; 1.77]) nor in multivariate analyses (adjOR 0.97, 95%CI [0.57; 1.66]). CONCLUSIONS: We did not find any significant association between socioeconomic deprivation and access to reperfusion therapy. This suggests that the implementation of EVT was not associated with increased access inequities.

Patients' productivity losses and informal care costs related to ischemic stroke: a French population-based study.

BACKGROUND AND PURPOSE: Large societal costs of stroke should not be ignored. We aimed to estimate patients' productivity losses and informal care costs during the first year after ischemic stroke. METHODS: A cross-sectional survey was performed within the STROKE69 regional population-based cohort study. At 1 year post-stroke, each patient and the corresponding main informal caregiver received questionnaires followed by a telephone interview if necessary. Time losses were valued using the human capital approach and proxy good method for patients with and without a professional activity, respectively. RESULTS: Among the 222 patients with ischemic stroke (58% men; mean age 68 years; and 86% with a modified Rankin Scale (mRS) score of <3 at 3 months), 54%, 32%, and 25% received informal, formal, and both cares, respectively. Among the 108 main informal caregivers, 63% were women, 74% lived with the patient, and 57% were retired or unemployed. The mean cost of productivity losses was estimated at €7589 ± €12 305 per patient in the first post-stroke year with 5.4%, 71.2%, and 23.4% of these being attributed to presenteeism, absenteeism, and leisure time, respectively. Informal care was given at an average of 25 h/week. The annual mean estimated total cost of informal care was €10 635 per caregiver. CONCLUSIONS: Informal care and productivity losses of patients with ischemic stroke during the first post-stroke year represent a significant economic burden for society comparable to direct costs. These costs should be included in economic evaluations with the adoption of a societal perspective to avoid underestimating the societal stroke economic burden.