Utilisation of Healthcare and Associated Services in XXXX : a data mining study.

@entity1 @entity2033
BACKGROUND: @entity1 with @entity2033 ( @entity2033 ) often require tailored healthcare and support packages that develop as the disease progresses. The Client Service Receipt Inventory (CSRI) gathers retrospective information on service utilization. This study investigated the use of formal services and informal care as measured by the CSRI and explored associations between informal care, disease severity and functional ability as measured by the Unified @entity2033 Rating Scale Total Motor Score (UHDRS-TMS) and functional scales. METHODS: All monitored longitudinal data from annual clinical assessments of UHDRS-TMS and functional assessments and CSRI collected under the auspices of the European @entity2033 Network (EHDN) REGISTRY study between the years 2004 and 2009 were utilised in the analyses. Disease severity was reflected by UHDRS-TMS. Functional ability was measured using the UHDRS functional scales. CSRI data were analysed according to percentage use of individual formal services and total estimated hours per week of informal care. Regression analyses were conducted to identify any associations between disease severity, functional ability and hours of informal care. RESULTS: 451 @entity2033 @entity1 (212 female; 239 male) completed one visit; 105 @entity1 (54 females; 51 males) completed two visits and 47 @entity1 (20 females; 27 males) completed three visits in total over the 5 year period. The mean time between visits was 1.2 years. At visit one, 74% of the @entity1 reported being in receipt of at least one formal hospital-based service in the previous six months, and 89% reported receipt of formal primary and community care services. In contrast, at the third visit, 62% of @entity1 had used hospital based services and 94% formal community based services in the previous six months. Fifty % of individuals required some form of informal care in the home at visit 1; this increased to 68% at visits 2 and 3. The mean (SD) estimated weekly total informal care hours at visits 1, 2 and 3 were 32.8 (49.4); 21.6 (53.6) and 21.3 (62.4) respectively. Only the scores on the Functional Assessment Scale (FAS) accounted for the variance in the weekly total informal care hours at each visit. CONCLUSIONS: Although it must be acknowledged that service use is supply driven, most @entity2033 @entity1 across Europe surveyed as part of this study were in receipt of formal primary and community care services and to a lesser extent formal hospital based services. There was however a large reliance on informal care in the home. The FAS appear to have predictive value on informal care requirements and may have utility in facilitating pro-active service provision and in particular when managing carer burden in this population.
