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. 2020 Oct;12(Suppl 2):S153-S162.
doi: 10.21037/jtd-cus-2020-009.

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

Alexandra Curtis  1 , Jeong Su Lee  1 , Georgios Kaltsakas  1   2 , Vivian Auyeung  2 , Simon Shaw  1 , Nicholas Hart  1   2 , Joerg Steier  1   2
Affiliations

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

Alexandra Curtis et al. J Thorac Dis. 2020 Oct.

Abstract

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.

Keywords: Rehabilitation; fatigue; post-polio syndrome (PPS); quality of life (QoL).

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Conflict of interest statement

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at http://dx.doi.org/10.21037/jtd-cus-2020-009). The series “5th Clinical Update Sleep” was commissioned by the editorial office without any funding or sponsorship. JS served as the unpaid Guest Editor of the series and serves as an unpaid editorial board member of Journal of Thoracic Disease. JS’s contributions were partially supported by the National Institute for Health Research (NIHR) Biomedical Research Centre based at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London, UK. JSL is funded by the Health Education England (HEE) and NIHR for a Pre-Doctoral Clinical Academic Fellowship programme. The other authors have no other conflicts of interest to declare.

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