Approach to Fatigue and Energy Conservation.

Fatigue, a common complaint in individuals with postpolio syndrome (PPS), is defined as an overwhelming sustained feeling of exhaustion and diminished capacity for physical and mental work. A comprehensive medical work-up is needed to rule out all other causes of fatigue. A sleep study should be considered for individuals with PPS who complain of fatigue. Self-reported outcome measures, such as the Fatigue Severity Scale, are reliable and valid tools to measure fatigue in this population. Fatigue management consists of individualized treatment of underlying medical conditions, energy conservation, pacing techniques, and lifestyle modifications.

Bracing: Upper and Lower Limb Orthoses.

The goals of bracing in polio and postpolio are to optimize joint position and support weak muscles with the goal of reducing falls, reducing deformities, and optimizing energy conservation. Orthoses are primarily used in the lower extremities to optimize gait. Less frequently, upper extremity orthoses are required. Polio survivors are at increased risk of falls and injuries. Appropriate bracing and compliance with the prescribed device can prevent falls and injuries. The best orthotic results are often achieved with patients who have significant deficits but walk regularly, are well motivated, and are willing to adapt their gait for orthotic use.

Nerve Conduction Study/Electromyography: Common Neuropathies and Considerations for Patients with Polio.

Acute poliomyelitis is now extremely rare in the United States. Worldwide there are still sporadic outbreaks, which are typically treated with acute inoculation programs. Although polio has effectively been eradicated, the full scope of the disease and its myriad manifestations both in the acute phase and in the postpolio syndrome phase, remain areas of fertile research, debate, and stimulating topics.

Joint and Back Pain: Medications and Role of Injection Therapy for Destructive Joint.

Postpolio syndrome (PPS) is a sequela with symptoms that often occur in patients who previously survived poliomyelitis. Pain is a characteristic feature of PPS. Although poliomyelitis is no longer commonly seen in the western world, there is a significant portion of patients living with PPS. Recognizing the signs of PPS is integral in developing treatment plans. Conservative management is routinely considered first-line therapy; however, alternate treatments, pharmacologic and minimally invasive, are used in more refractory cases. Approaching patients living with pain and PPS requires a holistic approach and an understanding of the efficacy of available treatment modalities.

Psychiatric Approaches and Outcomes.

Since the 1940s, the importance of addressing polio survivors' psychological issues along with their physical needs has been known. The clinical literature and polio survivors' narratives indicate positive responses to both psychotherapy and psychologically informed medical care for issues connected with acute polio and rehabilitation experiences as well as post-polio syndrome. Yet, barriers in the form of stigma and lack of awareness and resources prevent most from accessing such care. This article addresses the provision of polio-informed psychological treatment as well as ways of creating a culture that supports mental health within medical settings.

Palliative Care for Polio and Postpolio Syndrome.

Palliative care is a team-based approach focusing on relief of physical, psychosocial, and existential distress and communication about serious illness. Patients with poliomyelitis and postpolio syndrome are at risk for contractures and can benefit from involvement of physical and occupational therapy. Hypersialorrhea can be treated with anticholinergic medications, botox, or radiation. Patients with dyspnea may require noninvasive positive pressure ventilation ± opioids or benzodiazepines. Constipation is often due to autonomic dysfunction and decreased mobility. There is a higher burden of anxiety. Early conversations about patients' goals and values as it relates to their health may help frame future decision-making.

Medical Comorbidities and Complications Associated with Poliomyelitis and Its Sequelae.

Survivors of poliomyelitis may experience long-term sequelae that put them at increased risk for injury, pain, cardiovascular deconditioning, and functional decline. Osteoporotic fractures and entrapment neuropathies, in particular, may result in greater impairments in one's mobility and ability to perform activities of daily living. Dysphagia may necessitate the use of compensatory swallow strategies to minimize aspiration risk. Comorbid conditions, including hypertension, dyslipidemia, obesity, and stroke, are also very prevalent in this population. Risk factor modification, including diet, exercise, and medication compliance, is essential to achieve optimal health and function among survivors of poliomyelitis.

A twelve-week, four-arm, randomized, double-blind, placebo-controlled, phase 2 prospective clinical trial to evaluate the efficacy and safety of an anthroposophic multimodal treatment on chronic pain in outpatients with postpolio syndrome.

INTRODUCTION: Chronic pain and fatigue are the main symptoms of postpoliomyelitis syndrome (PPS). This study aimed to evaluate the efficacy and safety of an anthroposophic multimodal treatment for chronic pain in PPS outpatients. METHODS: A twelve-week, four-arm, randomized, double-blind, placebo-controlled, phase 2 prospective clinical trial was designed to compare four groups (n = 48): groups A and B received daily active experimental transdermal gel (ETG) or placebo gel (PTG), respectively; groups C and D received weekly external therapies, art therapies, and neurofunctional reorganization, plus either daily ETG or PTG, respectively. The pain symptoms were evaluated through a visual analogue scale (VAS), the McGill questionnaire, and thermography. Quality of life and resilience were evaluated by the WHOQOL-BREF and Antonovsky sense of coherence questionnaires applied at baseline and after the interventions. RESULTS: No related adverse events occurred, and 10% of the patients reports dysphagia improvement. In the groups C and D, pain reduction was statistically significant in both the placebo group (p = .02, d = 1.315) and in the ETG (p = .005, d = 2.035). However, following the week-to-week evolution of pain with the concomitant use of the ETG, this significant pain reduction occurred earlier from the 4th week and continued to decrease (p = .016, d = 1.369). In the group that received the complete multimodal treatment, the greatest significant benefit in increasing quality of life occurred in the physical domain and elevation in resilience with an emphasis on meaning and comprehension domains. CONCLUSIONS: The anthroposophic multimodal treatment group presented both safety and efficacy as an analgesic in the groups that received the nonpharmacological therapies, much earlier when associated with the ETG. The multimodal approach corresponded to the pattern of better efficacy for both pain reduction and improvement in quality of life and resilience.

Whole body vibration on people with sequelae of polio.

PURPOSE: The purpose was to explore the feasibility of whole body vibration (WBV) on polio survivors with/without post-polio syndrome (PPS) by studying its effects on walking speed (10-m walk test), endurance (2-min walk test), pain severity/interference (Brief Pain Inventory [BPI]), sleep quality (Pittsburg Sleep Quality Index), fatigue (Fatigue Severity Scale), leg strength (manual muscle testing and hand-held dynamometry), and muscle cramping (written logs). METHODS: Fifteen individuals completed the study, participating in eight sessions in two 4-week blocks. Participants started with ten 1-min vibration bouts/session, increasing to 20 min. Low (amplitude 4.53 mm, g force 2.21) and higher (amplitude 8.82 mm, g force 2.76) intensity blocked intervention occurred in random order crossover design. Blinded testing ensued before/after intervention blocks and at follow-up. RESULTS: No study-related adverse events occurred. Participants starting first with higher intensity intervention improved in walking speed (p = 0.017). BPI pain severity significantly improved (p = 0.049) after higher intensity intervention. No significant changes were found after low intensity vibration or in other outcome measures. CONCLUSIONS: WBV appears to be a safe exercise for this population. Long-term use in polio survivors needs to be researched, particularly in reducing barriers to participation to promote the physical aspects of health.

[Polio and post-polio syndrome, viewed by patients and health professionals in primary care]. / Polio y postpolio. Visión de pacientes y profesionales en atención primaria.

OBJECTIVE: Polio affects the quality of life of those who have suffered from it and causes health problems including the post-polio syndrome. The main goals of this work were to know the patients perspective of how they have been affected by the disease and establish the knowledge of post-polio syndrome among patients and primary health care professionals. METHODS: Interpretive qualitative research based on the Grounded Theory carried out in two health-care centers in the city of Malaga, one of them with care-rural clinics. Four focal groups were established with the participation of thirteen patients and two focus groups with twenty-six professional participants. Intentional sampling is performed until saturation. The analysis follows an inductive strategy using the Atlas Ti5.2 software. RESULTS: The people affected by polio reports their personal histories of suffering counteracted by strong family support and an active coping attitude, marked by great effort exertion, willpower and endurance. These people made a positive assessment of their lives minimising the limitations. They presented compatible symptoms with post-polio syndrome, which remain unidentified due to the lack of knowledge of it among patients and health-care professionals. The health care provided was considered deficient due to several causes as for instance lack of involvement, communication problems. CONCLUSIONS: The day-to-day polio experience is focused on personal overcoming with major roles played by family support, difficult relationships with the healthcare system and lack of knowledge of the post-polio syndrome.

OBJETIVO: La polio afecta a la calidad de vida de las personas que la han padecido y ocasiona problemas de salud entre los que se encuentra el síndrome postpolio. Los objetivos de este estudio fueron conocer la perspectiva de pacientes sobre cómo les ha afectado la enfermedad y describir el conocimiento sobre el síndrome postpolio de pacientes y profesionales de atención primaria. METODOS: Investigación cualitativa interpretativa basada en la Teoría Fundamentada, realizada en dos centros de salud de la ciudad de Málaga, uno de ellos con consultorios rurales. Se realizaron cuatro grupos focales con participación de trece pacientes y dos grupos focales con veintiséis profesionales participantes. Muestreo intencional hasta saturación. El análisis siguió una estrategia inductiva con ayuda del programa Atlas Ti 5.2. RESULTADOS: Los pacientes relataron una historia personal de sufrimiento, contrarrestada por un fuerte apoyo familiar y afrontamiento activo (categoría central), marcado por el sobreesfuerzo, la superación y una alta resiliencia. Realizaron una valoración positiva de sus vi- das, minimizando las limitaciones. Presentaron síntomas compatibles con el síndrome postpolio, no identificado por el gran desconocimiento de pacientes y profesionales. La atención sanitaria fue considerada deficitaria (falta de implicación y problemas de comunicación). CONCLUSIONES: La vivencia de la polio está centrada en la superación personal, con gran relevancia del apoyo familiar, las difíciles relaciones con el sistema sanitario y el desconocimiento del síndrome postpolio.

Postpolio syndrome and the late effects of poliomyelitis. Part 1. pathogenesis, biomechanical considerations, diagnosis, and investigations.

Postpolio syndrome (PPS) is characterized by new muscle weakness and/or muscle fatigability that occurs many years after the initial poliomyelitis illness. Many theories exist regarding the pathogenesis of PPS, which remains incompletely understood. In contrast, the late effects of poliomyelitis are often a consequence of biomechanical alterations that occur as a result of polio-related surgeries, musculoskeletal deformities, or weakness. Osteoporosis and fractures of the polio-involved limbs are common. A comprehensive clinical evaluation with appropriate investigations is essential to fulfilling the established PPS diagnostic criteria. PPS is a diagnosis of exclusion in which a key clinical feature required for the diagnosis is new muscle weakness and/or muscle fatigability that is persistent for at least 1 year. Electromyographic and muscle biopsy findings including evidence of ongoing denervation cannot reliably distinguish between patients with or without PPS. Muscle Nerve 58:751-759, 2018.

Post-polio syndrome and the late effects of poliomyelitis: Part 2. treatment, management, and prognosis.

Post-polio syndrome (PPS) is characterized by new muscle weakness and/or muscle fatigability that occurs many years after the initial poliomyelitis illness. An individualized approach to rehabilitation management is critical. Interventions may include rehabilitation management strategies, adaptive equipment, orthotic equipment, gait/mobility aids, and a variety of therapeutic exercises. The progression of muscle weakness in PPS is typically slow and gradual; however, there is also variability in both the natural history of weakness and functional prognosis. Further research is required to determine the effectiveness of selected medical treatment. Muscle Nerve 58:760-769, 2018.

Cognitive behavioural therapy for reducing fatigue in post-polio syndrome and in facioscapulohumeral dystrophy: A comparison.

BACKGROUND: Cognitive behavioural therapy does not reduce fatigue in post-polio syndrome, but is effective in facioscapulohumeral dystrophy. This difference in efficacy might be explained by a different role of cognitions in these conditions. OBJECTIVE: To compare fatigue-related cognitions between patients with post-polio syndrome and facio-scapulohumeral dystrophy. SUBJECTS: Patients with post-polio syndrome (n = 21) and facioscapulohumeral dystrophy (n = 24) allocated to a cognitive behavioural therapy intervention in 2 identical trials. METHODS: Assessed cognitions included: sense of control over fatigue; catastrophizing; acceptance; focusing on fatigue; and perceived social support. Group differences in cognitions (independent t-tests or Mann-Whitney U tests) and group differences in the association of cognitions with fatigue (linear regression models) were studied. RESULTS: No differences in cognitions were found between the 2 groups (p > 0.18). Furthermore, there were no cognition-by-group interaction effects, except for "perceived social support", for which a different association with fatigue was found between the 2 groups (p = 0.01). However, univariate models revealed no associations per group. CONCLUSION: Fatigue-related cognitions in severely fatigued patients with post-polio syndrome are not clearly different from that in facioscapulohumeral dystrophy. Thus, the lack of efficacy of cognitive behavioural therapy in post-polio syndrome cannot be attributed to unique cognitive characteristics of this population.

Aerobic Exercise Training in Post-Polio Syndrome: Process Evaluation of a Randomized Controlled Trial.

OBJECTIVE: To explore reasons for the lack of efficacy of a high intensity aerobic exercise program in post-polio syndrome (PPS) on cardiorespiratory fitness by evaluating adherence to the training program and effects on muscle function. DESIGN: A process evaluation using data from an RCT. PATIENTS: Forty-four severely fatigued individuals with PPS were randomized to exercise therapy (n = 22) or usual care (n = 22). METHODS: Participants in the exercise group were instructed to exercise 3 times weekly for 4 months on a bicycle ergometer (60-70% heart rate reserve). RESULTS: The attendance rate was high (median 89%). None of the participants trained within the target heart rate range during >75% of the designated time. Instead, participants exercised at lower intensities, though still around the anaerobic threshold (AT) most of the time. Muscle function did not improve in the exercise group. CONCLUSION: Our results suggest that severely fatigued individuals with PPS cannot adhere to a high intensity aerobic exercise program on a cycle ergometer. Despite exercise intensities around the AT, lower extremity muscle function nor cardiorespiratory fitness improved. Improving the aerobic capacity in PPS is difficult through exercise primarily focusing on the lower extremities, and may require a more individualized approach, including the use of other large muscle groups instead. TRIAL REGISTRATION: Netherlands National Trial Register NTR1371.

Experiences and perspectives of patients with post-polio syndrome and therapists with exercise and cognitive behavioural therapy.

BACKGROUND: Many persons affected with poliomyelitis develop post-polio syndrome (PPS) later in their life. Recently, the effectiveness of Exercise Therapy (ET) and Cognitive Behavioural Therapy (CBT) for PPS has been evaluated in a randomized controlled trial, but did not show a decrease in fatigue or improvement in secondary endpoints like Quality of Life and self-perceived activity limitations. The aim of this explorative study was to gain insight in the perceived effects and experiences of the interventions from the perspectives of the patients and therapists. METHODS: Qualitative data were collected through semi-structured interviews with 17 patients and 7 therapists. All participants were involved in the trial. A thematic analysis of the data was performed. RESULTS: Some patients experienced a short term enhanced endurance and a better use of energy during the day. However, in general patients did not experience a long lasting reduction of fatigue from the CBT or ET. Mainly patients of the CBT, but also some patients of the ET described an increase of self-esteem and self-acceptance. As a result, patients were sometimes better able to perform physical activities during the day. In contrast to the CBT, the ET was in general perceived by the patients as an intensive therapy, which was difficult to fit into their daily routine. Therapists of both the CBT and the ET struggled with a low intrinsic motivation of the patients in the study. This made it sometimes difficult for the therapists to follow the protocol. CONCLUSION: Confirming the negative quantitative study outcome, the qualitative results did not demonstrate lasting effects on fatigue. Patients did, however, experience some benefits on self-esteem and acceptance of the disease. This study showed that it is of great importance to work with feasible interventions; they should fit the patients' needs on a practical (fit into their daily routine) and mental (fit their need for support) level.

Treatment for postpolio syndrome.

BACKGROUND: Postpolio syndrome (PPS) may affect survivors of paralytic poliomyelitis and is characterised by a complex of neuromuscular symptoms leading to a decline in physical functioning. The effectiveness of pharmacological treatment and rehabilitation management in PPS is not yet established. This is an update of a review first published in 2011. OBJECTIVES: To systematically review the evidence from randomised and quasi-randomised controlled trials for the effect of any pharmacological or non-pharmacological treatment for PPS compared to placebo, usual care or no treatment.  SEARCH METHODS: We searched the following databases on 21 July 2014: Cochrane Neuromuscular Disease Group Specialized Register, the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, PsycINFO and CINAHL Plus. We also checked reference lists of all relevant articles, searched the Database of Abstracts of Reviews of Effects (DARE), the Health Technology Assessment (HTA) Database and trial registers and contacted investigators known to be involved in research in this area. SELECTION CRITERIA: Randomised and quasi-randomised trials of any form of pharmacological or non-pharmacological treatment for people with PPS. The primary outcome was self perceived activity limitations and secondary outcomes were muscle strength, muscle endurance, fatigue, pain and adverse events. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by The Cochrane Collaboration. MAIN RESULTS: We included 10 pharmacological (modafinil, intravenous immunoglobulin (IVIg), pyridostigmine, lamotrigine, amantadine, prednisone) and three non-pharmacological (muscle strengthening, rehabilitation in a warm climate (that is temperature ± 25°C, dry and sunny) and a cold climate (that is temperature ± 0°C, rainy or snowy), static magnetic fields) studies with a total of 675 participants with PPS in this review. None of the included studies were completely free from any risk of bias, the most prevalent risk of bias being lack of blinding.There was moderate- and low-quality evidence that IVIg has no beneficial effect on activity limitations in the short term and long term, respectively, and inconsistency in the evidence for effectiveness on muscle strength. IVIg caused minor adverse events in a substantial proportion of the participants. Results of one trial provided very low-quality evidence that lamotrigine might be effective in reducing pain and fatigue, resulting in fewer activity limitations without generating adverse events. Data from two single trials suggested that muscle strengthening of thumb muscles (very low-quality evidence) and static magnetic fields (moderate-quality evidence) are safe and beneficial for improving muscle strength and pain, respectively, with unknown effects on activity limitations. Finally, there was evidence varying from very low quality to high quality that modafinil, pyridostigmine, amantadine, prednisone and rehabilitation in a warm or cold climate are not beneficial in PPS. AUTHORS' CONCLUSIONS: Due to insufficient good-quality data and lack of randomised studies, it was impossible to draw definite conclusions about the effectiveness of interventions for PPS. Results indicated that IVIg, lamotrigine, muscle strengthening exercises and static magnetic fields may be beneficial but need further investigation to clarify whether any real and meaningful effect exists.

Does a subgroup of postpolio patients need different management?

Throughout the 30 years of postpolio syndrome (PPS) research, there have been many puzzling anomalies in the data and not enough information to make sense of them. It is therefore welcome that Winberg et al have examined physical activity in relation to life satisfaction, sex and age. They hypothesized that activity would decrease with age and found the opposite. This result is not so surprising as Ostlund et al found that vitality was associated with older age and that younger age was associated with more pain, increasing physical fatigue, decreasing sleep quality and reducing activity. This commentary will examine past postpolio research with unexpected results in order to describe a subgroup of patients who may be more susceptible to overusing muscles and have particular exercise and activity needs.