Abstract
Objective
Decades after an acute poliomyelitis infection many persons experience new symptoms or impairments which may affect their life satisfaction. The objective of this study was to investigate the association between life satisfaction and self-reported impairments in persons with late effects of polio.
Material and methods
One hundred and sixty-nine persons (104 women and 65 men) with prior polio responded on admission to rehabilitation to the Life Satisfaction Questionnaire (LiSat-11) assessing satisfaction with life as a whole and 10 domains of life satisfaction and to a 13-item questionnaire assessing self-reported impairments related to late effects of polio.
Results
A majority was to some degree satisfied with life as a whole and with all 10 domains of life satisfaction in LiSat-11, but less than 20% was very satisfied or satisfied with their somatic health. Muscle fatigue, muscle weakness, general fatigue, muscle and/or joint pain during physical activity and cold intolerance were the most frequently reported impairments. Overall, those who rated themselves as not satisfied (according to LiSat-11) reported significantly higher degrees of impairment than those who were satisfied. The relationships between the items of life satisfaction in LiSat-11 and the items in the self-report questionnaire varied from −0.01 to −0.64.
Conclusion
Satisfaction with life as a whole, and different domains of life satisfaction are low to moderately associated with self-reported impairments. This implies that rehabilitation interventions must address not only self-reported impairments but also activity limitations and participation restrictions in order to enhance life satisfaction in people with late effects of polio.
Résumé
Objectif
Des décennies après une infection aiguë par le virus de la poliomyélite, un grand nombre de personnes se retrouvent confrontées à de nouveaux symptômes ou troubles fonctionnels pouvant affecter leur qualité de vie. Les objectifs de cette étude étaient d’étudier l’association entre la satisfaction de vie et les troubles fonctionnels auto-rapportés par les patients atteints du « syndrome post-polio ».
Patients et méthode
À l’admission en centre de rééducation, 169 personnes (104 femmes et 65 hommes) infectés plusieurs années auparavant par le poliovirus ont répondu à l’auto-questionnaire de mesure de satisfaction de vie (Life Satisfaction Questionnaire [LiSat-11]) évaluant leur satisfaction de vie en général et dans dix domaines particuliers, ainsi qu’à un questionnaire de 13 items évaluant les troubles fonctionnels auto-rapportés liés au syndrome post-polio.
Résultats
En majorité, les personnes interrogées étaient globalement satisfaites de leur vie en général, ainsi que dans les dix autres domaines du LiSat-11, mais moins de 20 % d’entre elles se déclaraient très satisfaites ou satisfaites de leur état de santé. Les symptômes les plus rapportés étaient : fatigue musculaire, faiblesse musculaire, fatigue générale, douleur musculaire et/ou articulaire lors d’activités physiques et l’intolérance et froid. Dans l’ensemble, les patients insatisfaits (selon l’échelle LiSat-11) rapportaient un plus haut niveau de troubles fonctionnels que ceux se déclarant satisfaits. Les relations entre les items de satisfaction de vie dans le LiSat-11 et les items de l’auto-questionnaire variaient de −0,01 à −0,64.
Conclusion
La satisfaction de vie globale et dans ses différents domaines est faiblement à modérément associée aux troubles fonctionnels auto-rapportés. Cela implique que la prise en charge de rééducation fonctionnelle se concentre non seulement sur les troubles, mais aussi sur les limitations et restrictions de participation aux activités de vie quotidienne, afin d’améliorer la qualité de vie des personnes souffrant de syndrome post-polio.
1
English version
1.1
Introduction
Life satisfaction, commonly referred to as persons’ subjective contentment with their life, is often regarded as an overarching goal of rehabilitation interventions and in the management of life-long disabilities . Satisfaction with life as a whole and with different domains of life satisfaction is a result of an individual’s adaptation process and reflects the degree to which an individual perceive that his or her aspirations (or goals) and achievements have been met . Thus, life satisfaction is a generic concept without any explicit relation to medical conditions . Because of its central role in health care, it is important to establish the association between life satisfaction and disability as this may facilitate the development and implementation of appropriate strategies in the rehabilitation and management of life-long disabilities.
Several decades after an acute paralytic poliomyelitis infection, many persons (up to 80%) experience new symptoms or impairments, commonly referred to as late effects of polio, post-polio or post-polio syndrome . Impairments typically occurring in people with late effects of polio are muscle weakness, muscle fatigue, cold intolerance and musculoskeletal pain during physical activity . Other impairments, such as general fatigue, sleep disturbances, concentration difficulties, memory difficulties and mood swings, are also reported by persons with late effects of polio and may be directly or indirectly associated with their prior polio .
These impairments can lead to activity limitations and participation restrictions , which in turn can impact on life satisfaction. Despite this, few studies have examined life satisfaction in people with late effects of polio . Even though many persons with prior polio report that they are to some degree satisfied with life as a whole and with different domains of life satisfaction, it is evident that life satisfaction is reduced compared with non-disabled people . However, satisfaction with life as whole has not been reported to be related to any sociodemographic or disability related factors and these factors had also few relations to the 10 domains of life satisfaction in persons with late effects of polio . On the other hand, life satisfaction among men and women with prior polio has been found to be associated with perceived participation ; greater number of severe problems with participation corresponded with gradually decreased life satisfaction. Also, Kemp et al. reported that life satisfaction correlated significantly with family function, disability attitude and health satisfaction, whereas Burger and Marincek reported no clear association between life satisfaction and the number of new related problems decades after their polio. Thus, even if life satisfaction intuitively may be associated with various impairments, activity limitation and participation restrictions there is no clear picture and further studies are needed to determine the association between life satisfaction and disability.
The objective of this study was to investigate the association between life satisfaction and self-reported impairments in persons with late effects of polio.
1.2
Methods
1.2.1
Participants
A total of 169 community-dwelling persons with prior polio participated in this study. They had a confirmed history of acute poliomyelitis, a period of at least 20 years of functional stability and new symptoms representative of late effects of polio occurring after this period. Persons with major depression, systemic disease or any other disease (e.g., stroke, Parkinson’s disease, rheumatoid arthritis) that would significantly affect their life situation were excluded, although they would still be admitted to the rehabilitation programme. As part of the initial clinical examination and verification of prior polio, an electromyogram (EMG) were recorded in the right and left upper and lower limbs. On conventional EMG, motor unit action potentials in the limbs previously affected with paralytic polio were abnormally enlarged and polyphasic in configuration and there was a decreased recruitment secondary to a reduction in the number of motor units available for activation during voluntary muscle contraction. All participants had impairments related to late effects of polio in at least one limb (upper or lower limb, or both).
All assessments and data collection were performed on admission to a period of individualized interdisciplinary rehabilitation in a university hospital in the south of Sweden during the period 2005–2011. For all participants, this was their first contact with a specialised post-polio rehabilitation clinic since the onset of their new symptoms. At the time of the assessment, each participant was informed about the data collection and that data would be used for research purposes, and they all signed an informed consent form. The principles of the Declaration of Helsinki were followed. Following the assessments, data were entered into the database in the clinic and were retrospectively analysed.
1.2.2
Questionnaires
On admission to rehabilitation, all participants responded to the 11-item Life Satisfaction Questionnaire (LiSat-11) and to a 13-item questionnaire of self-reported impairments.
LiSat-11 is a self-administrated questionnaire that assesses global satisfaction with life in one item and domain-specific satisfaction in 10 items. The six response levels are: very satisfied; satisfied; rather satisfied; rather dissatisfied; dissatisfied; and very dissatisfied. LiSat-11 has a stable construct and has been found to be valid for the population at large. There exist population based reference values for LiSat-11 based on 2533 men and women between 18 and 65 years of age, which enables a comparison between those with chronic disabilities and healthy individuals .
The 13-item questionnaire assesses self-reported impairments related to late effects of polio and reported by persons with the condition. Participants are asked to rate how much, in the past 2 weeks, they had been bothered by the following impairments: muscle weakness; muscle fatigue; muscle and/or joint pain during physical activity and at rest; sensory disturbance; breathing difficulties at rest and during physical activity; cold intolerance; general fatigue; sleep disturbances; concentration difficulties; memory difficulties; and mood swings (irritability, anxiety and feeling depressed). For each item, there are five response options: 1 = not at all; 2 = a little; 3 = moderately; 4 = quite a bit; and 5 = extremely. The terminology in the questionnaire relates wholly to the body function components of the World Health Organization (WHO) International Classification of Function, Disability and Health (ICF) , and the response options are based on the ICF model with qualifiers, going from 0 (no problem, none, absent, negligible…) to 4 (complete problem, total…). The questionnaire has been developed as part of our clinical screening and rehabilitation medicine assessment on admission to rehabilitation. The items selected are based on typical impairments, directly and indirectly related to polio, and reported in previous studies of persons with late effects of polio, but also on clinical experience and patient interviews. The questionnaire has been used in our clinic over the past decade and patients have found that it covers relevant aspects of late effects of polio.
1.2.3
Statistical analysis
Relative frequencies were calculated for the six response levels of each of the 11 items in LiSat-11 and for the five response options of each item in the 13-item self-report questionnaire. In addition, the responses from LiSat-11 were grouped as “satisfied” (very satisfied and satisfied) and “not satisfied” (from rather satisfied to very dissatisfied) for each of the 11 items, according to the developer of the instrument and differences with a Swedish reference sample were analyzed using the Chi 2 test. Differences in levels of life satisfaction (satisfied vs not satisfied) for each of the 13 items in the self-report questionnaire was analysed using the Mann-Whitney test. The association between each of the 11 items in LiSat-11 and each of the 13 items in the self-report questionnaire was analysed using Spearman’s rank correlation coefficient. To account for multiple comparisons, the threshold for significance was increased to P < 0.01. All statistical analyses were performed using PASW Statistics version 18.0 (IBM SPSS Inc., USA).
1.3
Results
In Table 1 , the characteristics of the 169 persons with late effects of polio are presented. A majority of the participants were women, their mean age was 62 years at the time of the assessments and about half were retired. Their mean age at the acute poliomyelitis infection was 5 years and the mean duration of perceived stable functioning was 40 years, i.e., the period until they had experienced new symptoms after their prior polio.
| Sex (n) | |
| Women | 104 |
| Men | 65 |
| Age (years) | |
| Mean (SD) | 61 (11) |
| Origin (%) | |
| Scandinavian | 88 |
| European or non-European | 12 |
| Age at acute poliomyelitis infection (years) | |
| Mean (SD; range) | 5 (5; 1–27) |
| Perceived stable functioning (years) | |
| Mean (SD) | 41 (10) |
| Vocational situation (%) | |
| Working full time or part time | 32 |
| Disability pension | 24 |
| Retired | 39 |
Of the participants, 55% were satisfied (very satisfied or satisfied) with life as a whole, 33% rather satisfied and 12% dissatisfied to some degree ( Table 2 ). More than 70% were very satisfied or satisfied with contacts with friends, family life and partner relationship. The majority (more than 50%) were also very satisfied or satisfied with economy, ADL and psychological health. Less than 20% were to some degree satisfied (very satisfied or satisfied) with their somatic health. In comparison with the Swedish reference sample , the participants were significantly less satisfied with life as a whole and with six of the other 10 domains of life satisfaction. They were, on the other hand, significantly more satisfied with economy and contacts with friends than the Swedish reference sample, whereas there was no difference for family life and partner relationship.
| Very satisfied | Satisfied | Rather satisfied | Rather dissatisfied | Dissatisfied | Very dissatisfied | Satisfied a | |||
|---|---|---|---|---|---|---|---|---|---|
| Our sample | Swedish sample | Sign b level | |||||||
| Life as a whole (167) | 17 | 38 | 33 | 7 | 4 | 1 | 55 | 70 | *** |
| Vocation (160) | 12 | 28 | 35 | 13 | 5 | 6 | 40 | 54 | *** |
| Economy (169) | 12 | 40 | 32 | 5 | 5 | 7 | 52 | 39 | *** |
| Leisure (167) | 11 | 35 | 31 | 13 | 7 | 4 | 46 | 57 | *** |
| Contacts with friends (168) | 34 | 38 | 18 | 5 | 4 | 2 | 72 | 65 | *** |
| Sexual life (141) | 13 | 31 | 23 | 11 | 5 | 6 | 44 | 56 | *** |
| ADL (168) | 19 | 39 | 26 | 8 | 5 | 3 | 58 | 95 | *** |
| Family life (142) | 56 | 30 | 11 | 1 | 1 | 0 | 86 | 81 | NS |
| Partner relationship (120) | 53 | 28 | 9 | 3 | 3 | 3 | 81 | 82 | NS |
| Somatic health (166) | 2 | 14 | 43 | 21 | 13 | 7 | 16 | 72 | *** |
| Psychological health (157) | 21 | 33 | 24 | 9 | 8 | 5 | 54 | 81 | *** |
a The levels of very satisfied and satisfied were dichotomised as “satisfied” in agreement with the developer of LiSat-11 .
b The Chi 2 test was used to test for differences between our sample and the Swedish reference sample; significance is represented by *** ( P < 0.001) and NS represents “not significant”.
In Table 3 , the relative frequencies (% of the participants) of self-reported impairments in the 13-item questionnaire are presented. The impairments rated as the most bothering (response options 4 or 5) were general fatigue (60%), muscle fatigue (58%), muscle and/or joint pain during physical activity (57%) and muscle weakness (54%). The impairments rated as the least bothering (response option 1) were breathing difficulties at rest (72%) and sensory disturbance (50%).
| Response option a | |||||
|---|---|---|---|---|---|
| 1 | 2 | 3 | 4 | 5 | |
| Muscle weakness (b730) | 3 | 11 | 32 | 45 | 9 |
| Muscle fatigue (b740) | 2 | 8 | 31 | 48 | 10 |
| Muscle and/or joint pain during physical activity (b280) | 4 | 12 | 27 | 45 | 12 |
| Muscle and/or joint pain at rest (b280) | 14 | 31 | 30 | 23 | 2 |
| Breathing difficulties at rest (b440; b445) | 72 | 17 | 6 | 4 | 1 |
| Breathing difficulties during physical activity (b455) | 35 | 27 | 18 | 15 | 4 |
| Cold intolerance (b270) | 21 | 15 | 16 | 31 | 16 |
| Sensory disturbance (b265) | 50 | 29 | 11 | 8 | 1 |
| General fatigue (b130) | 5 | 15 | 19 | 49 | 11 |
| Sleep disturbances (b134) | 19 | 17 | 25 | 25 | 14 |
| Concentration difficulties (b140) | 31 | 25 | 19 | 18 | 5 |
| Memory difficulties (b144) | 26 | 32 | 21 | 19 | 1 |
| Mood swings (irritability, anxiety, feeling depressed) (b152) | 18 | 29 | 26 | 17 | 10 |
a Response options were: (1) not at all; (2) a little; (3) moderately; (4) quite a bit; and (5) extremely. For each item, the main International Classification of Function, Disability and Health (ICF) code is given in brackets.
In Table 4 , the differences between those who were satisfied versus not satisfied for each item in the LiSat-11 related to the 13 items in the self-report questionnaire are presented. Those who were not satisfied (in particular with life as a whole, leisure, vocation, contacts with friends and sexual life) reported significantly higher degrees of impairment than those who rated themselves as satisfied.
| Satisfaction a with | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Life as a whole | Vocation | Economy | Leisure | Contacts friends | Sexual life | ADL | Family life | Partner relationship | Somatic health | Psychol health | |
| Muscle weakness | ** | – | – | – | – | ** | *** | – | – | – | – |
| Muscle fatigue | – | – | – | ** | ** | ** | – | – | – | ** | – |
| Muscle and/or joint pain during physical activity | ** | *** | – | *** | – | – | – | – | ** | ** | ** |
| Muscle and/or joint pain at rest | ** | *** | ** | ** | – | – | – | – | – | – | ** |
| Breathing difficulties at rest | ** | – | ** | ** | ** | ** | ** | ** | – | – | *** |
| Breathing difficulties during physical activity | ** | – | – | – | ** | *** | *** | – | – | – | ** |
| Cold intolerance | *** | ** | – | *** | ** | *** | *** | – | – | – | *** |
| Sensory disturbance | *** | *** | – | *** | ** | – | ** | – | – | – | *** |
| General fatigue | *** | *** | *** | *** | *** | ** | *** | – | – | *** | *** |
| Sleep disturbances | – | ** | *** | *** | – | – | – | – | – | ** | *** |
| Concentration difficulties | *** | *** | ** | *** | *** | *** | – | – | – | *** | *** |
| Memory difficulties | *** | *** | ** | ** | *** | *** | – | *** | – | – | *** |
| Mood swings | *** | *** | *** | *** | *** | *** | *** | ** | *** | – | *** |
a Items in LiSat-11 reported as very satisfied and satisfied were dichotomised as “satisfied” and rather satisfied to very dissatisfied were dichotomised as “not satisfied” in agreement with the developer of LiSat-11 . Differences between groups regarding life satisfaction (Satisfied vs not satisfied) and self-reported impairments were analysed with Mann-Whitney U test. To account for multiple comparisons, the threshold for significance was increased to P < 0.01; ** P ≤ 0.01; *** P ≤ 0.001.
In Table 5 , a summary of the relationships between the 11 items of life satisfaction in LiSat-11 and the 13 items in the self-report questionnaire are presented. All correlations were negative and varied from –0.01 to –0.64. Satisfaction with life as a whole correlated significantly with all 13 self-reported impairments. Leisure, vocation, somatic health and psychological health correlated with 11 to 12 of the self-reported impairments, whereas family life and partner relationship correlated with only 3 and 2 of the impairments. Out of 143 correlations, 84 (59%) were significant at P < 0.01.
| Range of correlations coefficients | Number of significant correlations | |
|---|---|---|
| Life as a whole | –0.25 to –0.55 | 13 |
| Vocation | –0.14 to –0.52 | 11 |
| Economy | –0.06 to –0.36 | 9 |
| Leisure | –0.20 to –0.47 | 12 |
| Contacts with friends | –0.02 to –0.40 | 7 |
| Sexual life | –0.14 to –0.43 | 10 |
| ADL | –0.08 to –0.42 | 8 |
| Family life | –0.0 to –0.30 | 3 |
| Partner relationship | –0.14 to –0.32 | 2 |
| Somatic health | –0.18 to –0.32 | 11 |
| Psychological health | –0.19 to –0.64 | 11 |
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