Life after stroke Outcome and views of patients and carers

Sammanfattning: The aims were to follow stroke patients over time with respect to general pain, shoulder pain, weight loss, and health related quality of life (HRQOL), the latter also in stroke survivors' informal caregivers. Methods During a 1 year period, 416 first-ever stroke patients were included in the population based Lund Stroke Register; 327 survivors were followed up after four months and 305 one year later. Baseline assessments included weight, height (to calculate Body Mass Index), functional status (NIH Stroke Scale), plasma/serum albumin, prealbumin, and glycosylated hemoglobin (HbA1c). After four months, assessments included functional status (Barthel Index), HRQOL (SF-36), pain (visual analogue scale [VAS]), shoulder pain (clinical examinations and questionnaires), weight, albumin, and prealbumin. One year later the same parameters were examined, with addition of geriatric depression scale (GDS-20), and HbA1c. Results Patients' physical function deteriorated over time, but they improved in socio-emotional and mental domains of HRQOL. Surprisingly, caregivers had lower scores than patients in emotional and mental domains, indicating strain. In patients, depression was the most important determinant of HRQOL. Although prevalence of pain decreased over time, after 16 months a fifth had moderate-severe pain; across the entire study period one third experienced moderate to severe pain. Almost one third of patients developed shoulder pain, which mostly was moderate to severe and restricted daily life activities. Impaired arm motor function and low general status were the major determinants for shoulder pain. Weight loss >3 kg was found in a quarter of the patients at both follow-ups and appeared to be a marker of malnutrition. Major risk factors of weight loss >3 kg were eating difficulties, haemorrhagic stroke, low social participation, and low prealbumin. Conclusions Stroke patients need enhanced attention in post acute care regarding nutritional status, pain, and depression. An intervention program towards patients and their informal caregivers would have a potential to improve their life after stroke.