Resilience and Function in Adults With Chronic Physical Disabilities: A Cross-Lagged Panel Design.

BACKGROUND: Resilience is a psychological construct referring to one's positive adaptation in response to adversity. Evidence suggests that resilience may contribute to various function domains in adults with chronic physical disabilities. PURPOSE: To test hypothesized temporal associations between resilience and four function domains (anxiety, depression, social role satisfaction, and physical function) in individuals with chronic physical disabilities. METHODS: Participants were 1,574 adults with one of four chronic physical disabilities (spinal cord injury, muscular dystrophy, multiple sclerosis, or postpolio myelitis syndrome) who were participating in a large, ongoing USA-based longitudinal survey study. Three surveys were mailed on an approximately yearly basis. Resilience was assessed using the Connor-Davidson Resilience Scale 10-item (CDRSC-10) and each function domain was assessed using the respective Patient Reported Outcome Measurement System (PROMIS) short-form. RESULTS: Cross-lagged path models evidenced statistically significant reciprocal relationships between resilience and each function domain except physical function. The standardized lagged coefficients corresponding to resilience predicting social role satisfaction (T1-T2 = 0.09, T2-T3 = 0.09) had similar effect sizes as those corresponding to social role satisfaction predicting resilience (T1-T2 = 0.11, T2-T3 = 0.04), although resilience was a slightly stronger predictor in the second lag. In models assessing psychological function, resilience was a stronger predictor of later psychological function (resilience-to-anxiety, T1-T2 = -0.15, T2-T3 = -0.11; resilience-to-depression, T1-T2 = -0.21, T2-T3 = -0.13) than the inverse (anxiety-to-resilience, T1-T2 = -0.11, T2-T3 = -0.06; depression-to-resilience, T1-T2 = -0.12, T2-T3 = -0.05). CONCLUSIONS: The study findings suggest that resilience is a significant prospective predictor of psychological and social function over time in individuals with chronic physical disabilities.

Resilience and Function in Adults With Physical Disabilities: An Observational Study.

OBJECTIVES: To determine if resilience is uniquely associated with functional outcomes (satisfaction with social roles, physical functioning, and quality of life) in individuals with physical disabilities, after controlling for measures of psychological health (depression and anxiety) and symptom severity (pain, fatigue, and sleep disturbance); and to examine the potential moderating effect of sex, age, and diagnosis on the hypothesized associations between resilience and function. DESIGN: Cross-sectional survey study. SETTING: Surveys were mailed (81% response rate) to a community sample of 1949 individuals with multiple sclerosis, muscular dystrophy, postpoliomyelitis syndrome, or spinal cord injury. Participants were recruited through the Internet or print advertisement (28%), a registry of previous research participants who indicated interest in future studies (21%), a departmental registry of individuals interested in research (19%), disability-specific registries (18%), word of mouth (10%), or other sources (3%). PARTICIPANTS: Convenience sample of community-dwelling adults aging with physical disabilities (N=1574), with a mean Connor-Davidson Resilience Scale (10 items) score of 29. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patient-Reported Outcomes Measurement Information System measures of Satisfaction with Social Roles and Activities and Physical Functioning, the World Health Organization's brief Older People's Quality of Life Questionnaire, and the Connor-Davidson Resilience Scale (10 items). RESULTS: After controlling for age, age squared, sex, diagnosis, psychological health, and symptom severity, resilience was significantly and positively associated with satisfaction with social roles (ß=.17, P<.001) and quality of life (ß=.39, P<.001), but not physical function (ß=.04, P>.05). For every 1-point increase in scores of resilience, there was an increase of .50 in the quality of life score and .20 in the satisfaction with social roles score. Sex also moderated the association between resilience and satisfaction with social roles (F1,1453=4.09, P=.043). CONCLUSIONS: The findings extend past research, providing further evidence indicating that resilience plays a unique role in nonphysical functional outcomes among individuals with physical disabilities.

Self-reported depression and physical activity in adults with mobility impairments.

OBJECTIVE: To test hypothesized associations between depression and physical activity among adults with multiple sclerosis (MS), spinal cord injury (SCI), muscular dystrophy (MD), and postpolio syndrome (PPS). DESIGN: Cross-sectional survey. SETTING: Survey responses collected from individuals in the Washington state area (participants with SCI) and across the United States (participants with MS, MD, and PPS). PARTICIPANTS: Convenience sample of participants were surveyed (N=1676; MD, n=321; PPS, n=388; MS, n=556; SCI, n=411). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Patient Health Questionnaire-9 (PHQ-9) assessing depressive symptoms and the International Physical Activity Questionnaire (IPAQ) and Godin Leisure Time Exercise Questionnaire (GLTEQ) assessing physical activity. RESULTS: The average age was 56 years, 64% were women, 92% were white, 86% had a high school degree or higher, and 56% walked with an assistive device or had limited self-mobility. The IPAQ and GLTEQ explained a small but statistically significant and unique amount of the variance in PHQ-9 scores in all diagnostic groups, with no significant differences in the relation by condition, age, or mobility status (IPAQ R(2)=.004; GLTEQ R(2)=.02; both P<.02). CONCLUSIONS: Both physical activity measures demonstrated a small but statistically significant association with depression in all 4 diagnostic groups. Research is needed to determine longitudinal relations and whether physical activity interventions could promote improved mood in adults with physical disabilities.

Intravenous immunoglobulin treatment of the post-polio syndrome: sustained effects on quality of life variables and cytokine expression after one year follow up.

BACKGROUND: Expression of inflammatory cytokines in cerebrospinal fluid (CSF) has led to the hypothesis of intrathecal chronic inflammation to explain the denervation observed in post-polio syndrome (PPS). It has been shown that therapy with intravenous immunoglobulin (IVIG) improves physical performance and dampens down the inflammatory process at 6 months in PPS patients. We here examined the effects of IVIG on cytokine expression and clinical outcome one year after IVIG treatment. METHODS: From a previous study with 135 PPS patients included, 41 patients were further evaluated before un-blinding for one year (21 placebo and 20 treated with IVIG, Xepol® 50 mg/ml), and were assessed for clinical variables by performing the Short Form-36 survey (SF-36) questionnaire assessment, the 6 minute walk distance test (6MWT) and registering pain level by Visual Analogue Scale (VAS) after IVIG treatment. A separate cohort of 37 PPS patients went through lumbar puncture (LP) at baseline and 20 patients, treated with IVIG, repeated the LP one year later. Thirty patients affected with other neurological diseases (OND) were used as control group. Inflammatory cytokines TNF, TGFß, IFNγ, IL-23, IL-13 and IL-10 were measured in blood cells and CSF cells with RT-PCR. RESULTS: Scores of the physical components of SF-36 were significantly higher at the one year follow up time-point in the IVIG-treated patients when compared to baseline as well as to the control subjects. Pain VAS score and 6MWT improved significantly in the IVIG-treated patients when compared with baseline Relative expression of TNF and IFN-γ in both PBMCs and CSF from PPS patients were increased compared to OND subjects at baseline (p < 0.05). One year after IVIG-treatment a decreased expression of IFN-γ and IL23 was found in CSF of PPS patients, while anti-inflammatory IL-13 was increased (p < 0.05). CONCLUSIONS: IVIG has effects on relevant QoL variables and inflammatory cytokines up to one year in patients with PPS. This gives a basis for scheduling IVIG in upcoming trials with this therapy.

Risk factors for post-polio syndrome among an Italian population: a case-control study.

Post-polio syndrome (PPS) is a clinical syndrome of new weakness, fatigue and musculoskeletal pain occurring in a variable proportion of polio survivors decades after acute disease. To date, several risk factors for PPS development have been reported, although the etiology of this disorder remains elusive. Using a case-control design, we aimed to assess risk indicators for PPS in a group of Italian polio survivors. Subjects with prior poliomyelitis attending the rehabilitation hospital of Malcesine, Italy, were the target population. Patients with PPS, diagnosed according to the European Federation of Neurological Societies criteria, served as cases, while patients not meeting diagnostic criteria for PPS were used as controls. All subjects were assessed through a structured questionnaire made of 82 questions and neurological examination. The association with investigated risk factors (sex, age at polio onset, age at onset of symptoms, extension and severity of polio, employment) was analyzed by the calculation of the odds ratio. A total of 161 out of 391 eligible patients met the adopted diagnostic criteria for PPS, giving a frequency of 41.2%. Symptoms most frequently complained by PPS patients were loss of muscle strength, loss of resistance, loss of muscle volume and generalized fatigue. Female gender, the presence of respiratory disturbance during the acute phase of polio and the use of orthoses and aids during the recovery and stabilization represented independent risk factors for PPS in the studied population.

A 5-year longitudinal study of fatigue in patients with late-onset sequelae of poliomyelitis.

OBJECTIVES: To study the severity and 5-year course of fatigue in patients with late-onset sequelae of poliomyelitis (LOSP) and to identify physical and psychosocial determinants of fatigue. DESIGN: Prospective cohort study with 5 measurements over 5 years. SETTING: University hospital. PARTICIPANTS: Patients with LOSP (N=168); 89% of the subjects completed the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Fatigue assessed with the Fatigue Severity Scale (FSS). Potential determinants were perceived physical functioning, bodily pain and mental health, extent of paresis, walking capacity, comorbidity, sleeping disorders, coping, and social support. Associations were investigated by multivariable longitudinal analysis using generalized estimating equations. RESULTS: The mean FSS score ± SD at baseline was 5.1±1.4, which did not change significantly during the 5-year follow-up. Reduced physical functioning, increased bodily pain, reduced sleep quality, more psychologic distress, and higher task-oriented coping were independently associated with fatigue. The extent of paresis and walking capacity were strongly associated with physical functioning. CONCLUSIONS: Fatigue is severe and persistent in patients with LOSP due to physical and psychologic factors, which has implications for counseling and treatment. In addition to the commonly applied interventions targeting physical aspects, psychologic interventions are a potential area for reducing fatigue.

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.

Psychological resilience and depressive symptoms in older adults diagnosed with post-polio syndrome.

Depression is a serious comorbidity in people with disabilities; however, few studies have focused on depressive symptoms in older adults with post-polio syndrome (PPS). This study used a resilience conceptual framework that focused on patient psychosocial strengths to investigate the relationship between psychological resilience factors (e.g., acceptance, self-efficacy, personal resources, interpersonal relationships, self-rated health, spiritual growth, stress management) and depressive symptoms in a large sample (N = 630) of people older than 65 years who were diagnosed with PPS. Forty percent of the sample scored > or = 10 on the Center for Epidemiologic Studies Short Depression Scale (CES-D10), which is a higher percentage than what has been previously cited in other studies; however, 53% of the sample had good or excellent self-rated health, suggesting psychological resilience. Depression scores were regressed on seven selected resilience factors after controlling for functional limitations. Four of the seven variables accounted for 30% of the variance in depressive symptoms, with spiritual growth representing the main predictor (beta = -.26). The implications for rehabilitation nurses in developing a patient-strengths perspective in the assessment and counseling of older adults with PPS are discussed.

Sense of Coherence and the Association with Sociodemographics and Disability Related Factors in Persons with Late Effects of Polio.

BACKGROUND: Sense of Coherence (SOC) is important for successful adaptation in persons with life-long disabilities. A previous study has shown that persons with Late Effects of Polio (LEoP) have a level of SOC indicating that they generally have the ability to understand, handle, and have the motivation to deal with stressful events and problems arising in their lives. However, no study has explored the associations between SOC, sociodemographics, and disability-related factors in persons with LEoP. OBJECTIVE: To explore the associations between SOC, sociodemographics, and disability-related factors in persons with LEoP. DESIGN: A cross-sectional design. SETTING: University hospital outpatient clinic. STUDY PARTICIPANTS: Ninety-three persons (mean age 74 years, 52% women) with LEoP. MAIN OUTCOME MEASUREMENTS: Swedish versions of the Sense of Coherence scale (SOC-13), Self-reported Impairments in Persons with Late Effects of Polio (SIPP) scale, Reintegration to Normal Living Index (RNL-I) (subscales "Daily Functioning" and "Perceptions of Self"), and Satisfaction With Life Scale (SWLS). METHODS: The participants responded to a postal survey with background information and the four rating scales. To determine factors associated with SOC, a hierarchical regression analysis was performed with SOC as the dependent variable. RESULTS: Higher age, less bothered by symptoms of LEoP, better perceptions of self, and higher life satisfaction were significantly associated with a greater SOC score. The final model explained 60% of the variance in the SOC (R2 Adj = 0.60, P < .001). CONCLUSIONS: The strong association between SOC, higher age, and disability-related factors is important to consider in the rehabilitation of persons with LEoP. This knowledge can assist rehabilitation professionals to plan interventions that enable people with LEoP to develop strategies to better manage their daily life. LEVEL OF EVIDENCE: III.

Effects of the Interactive Videogame Nintendo Wii Sports on Upper Limb Motor Function of Individuals with Post-Polio Syndrome: A Randomized Clinical Trial.

Objective: To compare the effects of an upper limb videogame-based training with a training based on similar motor demands on upper limb function, dexterity, functionality, balance, fatigue, and pain in post-polio syndrome (PPS) and to assess the acceptability, feasibility, and safety of the intervention. Materials and Methods: This is a randomized, parallel, single-blind clinical trial. Thirty-nine individuals were randomized into Interactive Videogames Group (IVG, n = 19) and Active Exercises Group (AEG, n = 20). Participants performed two weekly sessions (50 minutes each), totaling 14 sessions with the aim of providing mild to moderate intensity. IVG practiced four Nintendo Wii Sport games (tennis, golf, boxing, and bowling). The AEG performed similar movements required for IVG. Primary outcome: upper limb motor function-Motor Function Measure-32. Secondary outcomes: dexterity-Box and Block test; functionality-Functional Independence Measure; balance-Functional Reach Test, muscle fatigue-Fatigue Severity Scale, upper limb pain-Visual Analogue Scale for pain, acceptability, applicability, and safety. Analysis of group, time, interaction between groups, and time effects was performed through repeated-measures analysis of variance (2 × 3) and Bonferroni post hoc test with alpha of 0.05. Results: Interactive videogames were safe, feasible, and acceptable. Both groups showed similar postintervention improvement on motor function, functionality, balance, pain, and fatigue, with maintenance over the follow-up period. There was an interaction effect between the groups on dexterity and the IVG demonstrated better performance compared with the AEG. Final Considerations: The similar positive clinical effects of the interactive video games on PPS upper limb function and its superior effects on dexterity support its use as a safe and feasible intervention. Particularly when it comes to chronic patients, who require long-term physical therapy, new and stimulating interventions may contribute to the rehabilitation process and improve their engagement in the treatment. Registered on the Brazilian Clinical Trials platform under number RBR-8S2NBF.

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.

Changes in ability, perceived difficulty and use of assistive devices in everyday life: a 4-year follow-up study in people with late effects of polio.

BACKGROUND: There are numbers of persons living in the community with late effects of polio, of which many develop new symptoms, but the course of progression is unclear. OBJECTIVES: To assess changes after 4 years in ability and perceived difficulty in persons with late effects of polio. MATERIAL AND METHODS: Community dwelling persons from a polio clinic. Information was gathered by questionnaire and interview on demographics, age at polio onset, affected body parts, health problems, the use of assistive devices, housing condition and activities of daily living (ADL) function as well as perceived difficulties. RESULTS: There were no significant increase in frequency of ADL dependency but perceived difficulties increased significantly and more used mobility devices. CONCLUSIONS: Over 4 years, more persons perceived difficulties and the use of assistive devices increased. This is might reflect adaptation and acknowledgement of problems previously ignored. Time is a factor in integrating knowledge and adaptation.

Prolonged benefit in post-polio syndrome from comprehensive rehabilitation: a pilot study.

PURPOSE: To report physical, psychological and functional outcomes from a pilot study of a multi-disciplinary rehabilitation programme for post-polio syndrome (PPS). METHOD: Twenty-seven participants completed the nine-day programme and were available for re-assessment at three and six months. Physical outcome measures were muscle strength and endurance; psychological outcomes included illness perceptions (IPQ), depression and anxiety (HADS); functional outcomes were fatigue (HFS) and client-centred occupational performance and satisfaction (COPM). RESULTS: There was no significant change at six months for muscle strength or anxiety. Significant improvements were recorded for exercise endurance, depression and levels of fatigue. A shift towards an endorsement that the patient's own behaviour could be important in symptom severity of PPS was seen. Five out of 24 participants demonstrated significant clinical changes in occupational performance and satisfaction on the COPM. CONCLUSIONS: Prolonged benefits were found for physical, psychological and functional outcomes. A qualitative study is planned to investigate the patient-reported benefits of attending the programme such as the support gained interacting with others with similar disability and in lifestyle adjustment such as pacing of physical activities.

Polio survivors perceptions of a multi-disciplinary rehabilitation programme.

PURPOSE: Post-polio syndrome refers to a late complication of the poliovirus infection. Management of post-polio syndrome is complex due to the extensive symptomology. European and United Kingdom guidelines have advised the use of rehabilitation programmes to manage post-polio syndrome. There is a paucity of research in relation to the effectiveness of rehabilitation interventions. The objective of this study is to explore polio survivor's perceptions of an in-patient multi-disciplinary rehabilitation programme. METHODS: Semi-structured interviews of community dwelling polio survivors who attended in-patient rehabilitation programme in the United Kingdom. Thematic analysis was used to describe and interpret interview data. RESULTS: Participants' experiences were influenced by past experiences of polio and their self-concept. Participants generally had a positive experience and valued being with other polio survivors. Positive strategies, such as pacing and reflection changed their mind-sets into their lives after the programme, though they still faced challenges in daily living. Some participants supported others with post-polio syndrome after completing the programme. CONCLUSIONS: Our research identified that participants experienced long term positive benefits from attending a rehabilitation programme. Strategies that users found helpful that explored the effectiveness of interventions to manage polio are not cited within a Cochrane review. If we are to recognise the lived experience and service user empowerment within a model of co- production it is essential that patient preferences are evaluated and used as evidence to justify service provision. Further research is required with polio survivors to explore how best rehabilitation programmes can adopt the principles of co-production. Implications for Rehabilitation The patients' expertise and lived experience must be at the centre of a rehabilitation programme. Strategies such as pacing and reflection are perceived as important strategies to enable self-management of polio and post-polio syndrome despite the limited evidence base to support these interventions. Polio rehabilitation programmes should not be time limited and commissioners and therapists need to ensure that follow up support is provided. When measuring outcomes patient preferences and views must be evaluated.

Goal Pursuit, Goal Adjustment, and Pain in Middle-Aged Adults Aging With Physical Disability.

Objective: Aging with physical disability disrupts one's ability to achieve valued goals due to changes in symptoms and function. It is unclear how to cope optimally in this context. This study examined whether two possible strategies-tenacious goal pursuit (TGP) and flexible goal adjustment (FGA)-were associated with reduced pain interference and depressive symptoms and greater well-being, and protected against pain intensity, and FGA was more protective with increasing age and worse physical function. Method: Middle-aged adults with muscular dystrophy, multiple sclerosis, post-polio syndrome, or spinal cord injury (N = 874; MAGE = 58.3 years, range = 46-68; MDISEASEDURATION = 26.2 years, range = 2-67) completed two questionnaires, a year apart. Results: TGP and FGA use was associated with greater well-being. FGA use predicted decreased depressive symptoms. Concurrent use of both predicted decreased pain interference. Discussion: Adults with disability employ a variety of goal management strategies. Findings support TGP and FGA as potential intervention targets for healthy aging with disabilities.

Quality of life for post-polio syndrome: a patient derived, Rasch standard scale.

OBJECTIVE: To design a disease-specific quality of life (QoL) questionnaire for people with post-polio syndrome (PPS). METHODS: Qualitative interviews were conducted with 45 people with PPS to identify themes and derive potential items reflecting impact upon QoL. After cognitive debriefing, these were made into a questionnaire pack along with comparative questionnaires and posted to 319 patients. The 271 (85%) returned questionnaires were subjected to exploratory factor analysis (EFA) and Rasch analysis. RESULTS: A 25 item scale, the post-polio quality of life scale (PP-QoL), showed good fit to the Rasch model (conditional chi-square p = 0.156), unidimensionality (% t-tests 2.0: CI 0.7-3.8), and Cronbach's alpha of 0.87. With the latent estimate transformed to a 0-100 scale, the mean score was 56.9 (SD 18.5) with only 3.3% of respondents at the floor or ceiling of the scale. Test-retest reliability showed an intraclass correlation coefficient (ICC) (2.1) of 0.916, and correlation of 0.85. CONCLUSION: The disease-specific PP-QoL demonstrated excellent reliability, appropriate concurrent validity, and satisfied the standards of the Rasch model. It enables examination of the impact of health status upon perceived QoL, and the impact of rehabilitation interventions. The scale is freely available for academic or not-for-profit users to improve research in this neglected, disabling condition. Implications for Rehabilitation In post-polio syndrome (PPS), existing work examines aspects of health-related quality of life (HRQoL), such as activity limitations. A disease-specific QoL measure would enable researchers to model the impact of health status, such as fatigue or mobility restrictions, upon QoL in PPS. The post-polio quality of life scale (PP-QoL) is based on the patients' lived experience, meets Rasch standards and is free for use for academic and not-for-profit researchers. The raw score is reliable for individual use in clinical settings, and interval scale transformation is available for parametric applications and the calculation of change scores.

Sense of Coherence in persons with late effects of polio.

BACKGROUND: Sense of Coherence (SOC) is important for successful adaptation and mental well-being in people with life-long medical conditions. Late effects of polio (LEoP) often lead to a life-long disability, but no study has assessed SOC in this population. OBJECTIVE: To assess SOC in persons with LEoP and to explore the association between SOC, demographics (age, gender, marital status and level of education) and variables related to LEoP (age at polio onset, number of years from polio until onset of LEoP and self-rated disability). METHOD: Ninety-three community-dwelling persons with clinically verified LEoP responded to a postal survey with the Sense of Coherence Scale (SOC-13). A hierarchical multiple regression analysis was performed to explore the associations with SOC. RESULTS: SOC varied considerably among the participants. The mean and median SOC-13 total sum score was 71.8 and 76 points, which is similar to age-matched non-disabled people. The number of years before onset of LEoP and self-rated disability together with the participants' marital status and level of education explained 37% (p < 0.001) of the variance in SOC. CONCLUSION: Persons with LEoP have a level of SOC indicating that they generally have the ability to understand, handle and being motivated when dealing with stressful events and problems arising in their lives as a result of their disability. Being married and having a higher education, living many years before onset of LEoP and perceiving a mild to moderate disability contributed to a strong SOC.

[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.

Anxiety, depression, and function in individuals with chronic physical conditions: A longitudinal analysis.

OBJECTIVE: This longitudinal study examined the unique relationship between anxiety, symptoms (pain intensity, sleep disturbance, fatigue severity), and function domains (self-reported cognitive function, physical function, satisfaction with social roles) in individuals with chronic physical conditions, independent of depressive symptoms. METHOD: Three surveys were mailed on an approximately yearly basis to community-dwelling adults with one of four chronic physical conditions (spinal cord injury, multiple sclerosis, muscular dystrophy, postpoliomyelitis syndrome). The first survey was completed by 1594 individuals (T1). Of these, 1380 completed the second survey (T2), and 1272 completed the third survey (T3). RESULTS: Mixed growth curve models evidenced significant concurrent and longitudinal associations between anxiety and each symptom and function domain, independent of depression severity. The largest unique association found was between anxiety and self-reported cognitive function; inclusion of the measure of anxiety in the model improved model fit substantially over depression alone, χ²[2] = 104.40, p < .001. Both anxiety and depression exhibited similar effect sizes in their unique relationships with each symptom and function domain measure. However, depression was more strongly associated with satisfaction with social roles and physical function than was anxiety. CONCLUSIONS: The findings showed that anxiety assessed at one point in time demonstrated significant and unique associations with concurrent and subsequent symptom and function domains. Given that anxiety has been inadequately studied (and perhaps evaluated and treated) in rehabilitation populations, the current findings suggest that researchers and clinicians should broaden their scope when assessing and treating psychological distress to incorporate anxiety and related disorders. (PsycINFO Database Record (c) 2018 APA, all rights reserved).