Studies of people living with multiple sclerosis in Stockholm county : evaluation of methods for data collection and aspects of functining and use of health care services

Sammanfattning: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system with potential consequences to both the physical and psychosocial dimensions of functioning in afflicted individuals. The aim of this thesis was to evaluate the methods of data collection by means of home visits to people with MS (PwMS) using a comprehensive protocol with structured interviews and tests on functioning, health-related quality of life (HRQoL), use of health care services and satisfaction with care, complemented by data collection through a register of use of health care services. Furthermore, the aim was to describe and analyse HRQoL and prevalence of depressive symptoms with respect to sociodemographic and disease-related factors and sense of coherence (SOC), and to describe and analyse use of health care services and satisfaction with care, in a population-based sample of PwMS in Stockholm. Two separate data collections were performed via face-to face structured interviews and tests in the homes of PwMS, and via a register of health care services. The sample used for the pilot study consisted of 26 purposefully selected PwMS, with different levels of disabilities and modes of living. The sample (n= 166) used in the second data collection was population-based, with PwMS identified from a stratified 15% of a pool of 2,129 individuals compiled from lists from various sources, mainly from the departments of neurology in Stockholm County, and subject to a number of inclusion criteria. The comprehensive protocol used at the home visits comprised a number of tests and questionnaires on functioning and HRQoL, including the Sickness Impact Profile (SIP), the Euroqol-5D (EQ-5D), the Beck Depression Inventory (BDI) and questionnaires on the use of services and satisfaction with care. Data on the use of health care services during a three-year period prior to each home visit to PwMS, by means of out-patient and ih-patient care, was collected through a computerized register at Stockholm County Council. The pilot studies showed that the chosen methods for describing functioning, HRQoL, use of health care services and satisfaction with care were feasible for PwMS, irrespective of level of disability or mode of living. The protocol used at the home visits was well accepted by both PwMS and family caregivers, and needed only minor modifications in make them suitable for the population-based study. Further, the register of health care services was considered a reliable source of information for evaluating detailed use of services by PwMS over a three-year period. In the population-based sample, HRQoL was negatively affected in all dimensions measured, but especially in home management, walking and recreation. HRQoL was poorer in PwMS, including those with milder disease and shorter disease duration, than in the general population. Not working, higher disease severity, and weak SOC were independently associated with major impact on HRQoL. One fifth (19%) of the PwMS were depressed, as measured by the BDI. Depressed PwMS reported poorer HRQoL than the non-depressed in several aspects. Depressive symptoms were associated with poor memory function, but not with any of the other measures of functioning; measures on attention, walking speed, manual dexterity, ADL, or frequency of social/ lifestyle activities. Higher proportions of PwMS with depressive symptoms were found among those with weak SOC than in those with moderate to strong SOC. During the study period of three years prior to each home visit of PwMS, high proportions of PwMS used hospital and primary care in parallel, with many departments and services involved. Primary care constituted 54% of all out-patient care and hospital neurology care constituted 20%. A mean proportion of 24% was annually admitted to in-patient hospital care. In all, 73% of the PwMS had assistive advices at home, 45% had home adaptations and 64% had permits for health-related transportation service. Some 37% used informal care from partners. PwMS were in general satisfied with care, but certain areas with which higher proportions of PwMS expressed dissatisfaction concerned accessibility of practical psychosocial advice and support and rehabilitation periods, and the participation of PwMS in planning of their care. Considering the broad impact on HRQoL in most PwMS and the high prevalence of depressive symptoms, attention to health and functioning - from the perspective of PwMS - is strongly indicated in the management of MS. Further, health-care units engaged in MS management should survey the totality of services available for PwMS when planning and implementing individualized care interventions, since most PwMS will already be receiving care in more than one department or unit. The development of evidence-based, cost-effective health-care services to improve HRQoL and well-being is warranted; i.e., interventions, both somatic and psychological, that optimize health in a comprehensive perspective.