Guillain-Barré syndrome : disability, quality of life, illness experiences and use of healthcare

Sammanfattning: Aim: The overall aim of this thesis was to provide a comprehensive description of how individuals may be affected by GuillainBarré syndrome (GBS), in terms of on body function, activity, and participation as well as on healthrelated quality of fife, and describe changes over time during the first 2 years after onset. Other aims were to describe the use of healthcare and patient satisfaction, and to report on the subjective experiences of failing ill with GBS. Methods: In Papers I-II 42 patients diagnosed with GBS were followed for 2 years with repeated evaluations of functioning, health-related quality of life and coping capacity. Assessment of functioning included testing of muscle strength, facial functions, grip strength, 10 meter walking, manual dexterity, balance, motor performance, pain, fatigue and respiratory function. Measures of sensory functions were performed by vibration, paraesthesia and pinprick/light touch. Measures of disease-related variables included the discase-specific Hughes Scale, falls and autonomic dysfunction. Independence in activities of daily living (ADL) was assessed via the Barthel Index and extended Katz ADL Index. Frequency of social/lifestyle activities was assessed via the Frenchay Activity Index. Health-related quality of fife was assessed via the Sickness Impact Profile and coping capacity via the Sense of , Coherence Scale. Evaluations were performed primarily as home visits at five occasions during the 2-year followup period. In Paper III the use of health-care, patient satisfaction and impact on caregivers during the 2-year period were investigated. Paper IV was a qualitative study. Participants were interviewed at 2 years after onset of GBS. An interview guide was used with three thematic areas: experience of onset of GBS, thoughts regarding the diagnosis and illness experience during hospital care. The transcribed interviews were analyzed using content analysis. Results: Mean age of the 42 patients was 52 years. Twenty-four patients (57%) were male, 16 patients (38%) had a pre-existing illness, 36 patients (86%) had immunomodulatory treatment in the acute phase, and nine patients (21 %) required ventilator support for 5-287 days (Papers I-III). Most significant improvement in muscular speed and strength occurred within the first year after onset of GBS, especially in the first 6 months. For some individuals there was a continuing improvement during the whole study-period. At 2 years after GBS onset 55% of patients had reduced muscle strength in the lower body, 31 % had reduced grip strength, 48% reported paraesthesia, 33% experienced pain, and 40% fatigue (Paper I). Most significant improvement in ADL-capacity occurred the first 6 months after GBS onset. There was no significant change in social/lifestyle activities at 2 years after onset compared to a retrospective measure before onset of GBS. Seven patients (17%) were on sick leave or had. retired due to residual deficits of GBS at 2 years after onset Regarding health-related quality of life, the physical dimensions of the Sickness Impact Profile showed significant improvement the first year after onset and the psychosocial dimensions the first 6 months. Scores on the Sense of Coherence Scale were stable over the 2- year period (Paper II). Duration of in-patient hospital stay was more than 3 months for 26% of patients. Rehabilitation accounted for the major part of care after GBS. Visits to physical therapists in primary care or day-visits at rehabilitation centers accounted for 74% of the outpatient care during the 2-year follow-up. Patient satisfaction with the received care was overall high. Dissatisfaction was reported regarding cost of care and disease-specific information. Several patients had informal help from an informal caregiver during the 2 years. Spouses of the patients expressed a heightened concern and responsibility (Paper III). Thirty-five of the 42 patients participated in an interview. They described their experiences of the onset as either an incomprehensible, prolonged deterioration or as a frightening rapid onset. Regarding the diagnosis, the theme confidence in recovery dominated. They relied heavily on the reassurance of a positive prognosis. As illness progressed during the initial hospital care the participants described fear and insecurity in a vulnerable situation, a hopeful improvement but also an alarmingly slow recovery (Paper IV). Conclusions: During the first 6 months after GBS onset the primarily recovery occurred. Rehabilitation must therefore start early and the prognosis of recovery can be estimated on the grade of recovery at 6 months. During the period from 1 year to 2 years recovery was evident in a few patients. These patients need continuing rehabilitation. Disability was seen in about 25% of patients at 2 years after onset. Psychosocial support should be included early in the rehabilitation for patients identified to have a slow, incomplete recovery. GBS may have widespread impact in several life areas over time and suggest that health professionals need to have a broad, longterm perspective when treating patients with this disorder.