Social and economic impact of a case management approach for people with rare and complex conditions in Salaj, Romania

Abstract

Background: Over 36 million people in Europe (patients and families) are affected by a rare disease (RD). Often not sufficiently supported by mainstream social systems, they struggle to make the most of their potential throughout their life course. Additionally, caregivers assisting their family member may find providing care over the long term challenging. A recent survey by EURORDIS-Rare Disease Europe showed that many caregivers (30%) spend more than six hours daily helping the patients. For 52%, the RD had a severe or very severe impact on their daily lives, and the time dedicated to coordination of care was substantial both for the patients themselves and their caregivers. The INNOVCare project, co-funded by the European Union, suggests implementation of integrated and patient-centred care pathways. These pathways involve linking health services to social and support services that RD patients use on a daily basis. In a current pilot project in Salaj, Romania, four case managers provide individualised guidance to coordinate the services for the user, to delineate a personalised pathway for each patient and to create effective changes in patients’ autonomy and daily lives. Our study aims to analyse the social and economic impact of this project, including both resource consumption and potential improvements in patients’/families’ quality of life. Methods: 120 patients with RD were randomly assigned to case managers for nine months in two cohorts. The first cohort will receive case management support for nine months whereas the control group usual treatment. After nine months the groups will be rotated. Data collection started in March 2017 through questionnaires to patients and their families distributed before, after nine months, and after 18 months using the same measurement tools. The questionnaires cover socio-economic status; patients’ condition, level of disability, and estimation of need; use of health, social and local services, health-related quality of life; work situation; and caregiver burden. Preliminary results: Patients’ mean EQ VAS score was 53.3 at baseline. The majority reported any problems in all dimensions with pain/discomfort and mobility being the most prominent. After 9 months, the mean scores were 54.0 and 62.0 for the 1st and 2nd cohort, respectively. Patients reported most problems in mobility and pain/discomfort (1st cohort) compared to usual activities and anxiety/depression (2nd cohort). Caregivers reported a mean EQ VAS score of 74.2 at baseline. At follow-up, the mean scores were 83.9 and 80.8 with the highest prevalence of problems reported in the dimensions pain/discomfort and anxiety/depression. ZBI scores showed a reduction from baseline to first follow-up. Mean ZBI (Zarit Caregiver Burden Interview) was 13.2 at baseline compared to 12.0 (1st cohort) and 12.3 (2nd cohort) at follow-up. Data analysis is ongoing and more results will be presented at the conference. Conclusions: Preliminary results from the 9-months follow-up suggest a positive impact mainly on the caregivers. However, by achieving coordinated and more person-centred care, the social inclusion will improve both for the patients and for their caregivers, which will hopefully lead to a reduced caregiver burden and less anxiety, stress, and financial pressure.