The value of a post-polio syndrome self-management programme.

BACKGROUND: Post-polio syndrome is characterised by symptoms of fatigue, pain and new-onset neuromuscular weakness, and emerges decades after the initial poliovirus infection. We sought to evaluate the only post-polio syndrome specific self-management programme in the United Kingdom. METHODS: This was a retrospective study of patients who had completed a residential self-management programme led by a multi-disciplinary clinical team. Following a confirmed diagnosis of post-polio syndrome by rehabilitation and neurology specialists, patients were offered to participate in the programme. Although group-based, patients also received individually tailored support on physical exercise and fatigue management. Physical effects, physical function, psychosocial well-being measures were assessed at baseline and 6 months follow-up. Knowledge was tested at baseline and immediately following the programme. Statistical comparisons were made using paired t-test and Wilcoxon signed rank test according to the data distribution. RESULTS: Over a period of 17 years, 214 participants (median age 61.3 years old, 63% female) attended 31 programmes. At 6 months the following post-polio syndrome specific symptoms improved significantly: fatigue, as measured by the Multidimensional Assessment of Fatigue scale [37.6 (7.1) vs. 34.2 (9.3), P=0.005]; and pain [15.0 (6.1) vs. 13.1 (6.7), P=0.001], atrophy [10.0 (8.0-12.0) vs. 9.0 (7.0-11.0), P=0.002] and bulbar symptoms [3.0 (1.0-5.0) vs. 2.0 (0-4.0), P=0.003] as measured by the Index of Post-polio Sequelae scale. Knowledge related to post-polio syndrome also significantly increased [14.0 (11.0-16.0) vs. 17.0 (16.0-19.0), P=0.001]. Participants were able to walk at a faster speed over 10 meters [0.77 (0.59-1.00) vs. 0.83 (0.67-1.10) m/s, P=0.003] and walked longer distances during the 2-minute walk test [76.9 (31.7) vs. 82.0 (38.4) m, P=0.029]. Depression and anxiety scores did not change over time [PHQ-9, 2.0 (0.3-10.8) vs. 2.0 (0.3-6.8), P=0.450; GAD-7, 2.0 (0-7.0) vs. 1.0 (0-3.0), P=0.460] nor was there change in self-reported quality of life {60 [50-70] vs. 60 [55-70], P=0.200}. CONCLUSIONS: This study suggests that a post-polio syndrome self-management programme led to improvement in symptoms, knowledge and walking speed, but not quality of life. Anxiety and depression scores remained low.