Reidun Jahnsen

MUSCULOSKELETAL PAIN IN ADULTS WITH CEREBRAL PALSY COMPARED WITH THE GENERAL POPULATION

OBJECTIVE To examine prevalence and localization of musculo-skeletal pain in adults with cerebral palsy compared with the general population and to investigate variables potentially associated with pain. DESIGN A postal survey. SUBJECTS Persons with cerebral palsy and no intellectual disabilities, 18 years or more, living in Norway. METHODS A multidimensional questionnaire, including items on musculo-skeletal pain, was sent to 766 adults with cerebral palsy. RESULTS In total 406 persons responded, 49% females and 51% males age range 18-72 years (mean 34 years). All categories of cerebral palsy were represented. Nearly one-third of the adults with cerebral palsy had chronic pain, vs 15% in the general population. Mean scores of domain of bodily pain on Short Form 36 were significantly lower from an earlier age in adults with cerebral palsy. Back pain was the most common in both groups. Pain in adults with cerebral palsy was significantly associated with gender, chronic fatigue, low life satisfaction and deteriorating physical function. CONCLUSION Musculo-skeletal pain is a pronounced problem in adults with cerebral palsy from an early age, and should be addressed specifically in the follow-up programs, and in further clinical studies on potential causal pathways.

Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study.

Aim  To compare walking function, pain, and fatigue in adults with cerebral palsy (CP) 7 years after an initial survey.

Fatigue in adults with cerebral palsy in Norway compared with the general population

Fatigue is commonly reported among adults with cerebral palsy (CP) and in the general population. The aim of this study was to examine the prevalence of perceived fatigue in adults with CP compared with the general Norwegian population. A multidimensional questionnaire, containing among other instruments the Fatigue Questionnaire, was sent to persons with CP aged 18 years or older with no intellectual disabilities documented in their medical records. Results were compared with recently published results of a study of fatigue in the general population in Norway. There were 406 respondents (209 males, 197 females; mean age 34 years, SD 11 years; age range 18 to 72 years). Distribution of the different types of CP coincided with international epidemiological studies on CP. Adults with CP reported significantly more physical, but not more mental fatigue, than the general population. The strongest predictors associated with fatigue were bodily pain, deterioration of functional skills, limitations in emotional and physical role function, and low life satisfaction. Fatigue was not significantly associated with type of CP but was most prevalent in persons with a self‐reported moderate grade of CP. Results of the present study indicate that physical fatigue is a pronounced problem in adults with CP, which has an impact on the preservation of functional skills and life satisfaction. Fatigue and factors related to fatigue should be addressed specifically in follow‐up programmes for persons with CP.

Adult outcomes and lifespan issues for people with childhood‐onset physical disability

This paper aimed to discuss functioning, quality of life, (QoL) and lifespan care issues of adolescents and young adults with childhood‐onset physical disability from a clinical, scientific, and personal perspective. We present a résumé of results of recently performed studies in rehabilitation‐based samples of (young) adults with childhood‐onset conditions such as cerebral palsy (CP) and spina bifida (SB), and different models of transition and lifespan care. The studies showed that many young adults with a childhood‐onset disability experience health‐related problems such as functional deterioration, pain or fatigue, and an inactive lifestyle. A significant number are restricted in participation in work, housing, and intimate relationships. They perceive a lower health‐related and global QoL compared with a reference group. In some centres in the UK and the Netherlands specialized outpatient services are available or being developed. In conclusion, transition to adulthood is a critical phase for reaching autonomous participation in adult life. There is an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood‐onset disability.

Reliability of the Pediatric Evaluation of Disability Inventory (PEDI)

Pediatric Evaluation of Disability Inventory (PEDI) is an instrument for evaluating function in children with disabilities aged 6 months to 7.5 years. The PEDI measures both functional performance and capability in three domains: (1) self-care, (2) mobility, and (3) social function. The PEDI has recently been translated into Norwegian. The purpose of this study was to investigate the inter-rater, inter-respondent and intra-rater reliability of the Norwegian version of the PEDI. Reliability was investigated in a sample of 30 Norwegian children without disabilities between 1.0 and 5.0 years. Interviews with parents were conducted twice by the same occupational therapist, and once by a physiotherapist. Kindergarten teachers were also interviewed by the occupational therapist. Using children without disabilities allows us to set up a standard for functional ability. Deviation from the point may indicate improvement or worsening of the state. The inter-rater and intra-rater part of the study showed excellent agreement of the observations, indicated both by small differences and high Intraclass Correlation Coefficients (ICC) (0.95-0.99). The discrepancy between the different interviews was highest between the reports from the parents and the kindergarten teachers (inter-respondent reliability), indicated by ICC from 0.64-0.74. Results of this study indicate that improved reliability is secured when the same interviewer interviews the same respondent, as well as when two trained interviewers interview the same respondent. The consistency of scores should be reviewed when different respondents are interviewed. Professionals administering the PEDI needs to be trained following a required procedure in order to secure consistency in their rating.

Preoperative gait analysis has a substantial effect on orthopedic decision making in children with cerebral palsy: comparison between clinical evaluation and gait analysis in 60 patients.

Background There is still some debate regarding the role of 3-dimensional gait analysis in routine preoperative evaluation of children with cerebral palsy. The aim of this prospective study was to evaluate to what extent introduction of 3-D gait analysis changes preoperative surgical planning. Method Before gait analysis, 60 ambulatory children aged 10 (4–18) years with spastic cerebral palsy had a specific surgical plan outlined, based on clinical examination by orthopedic surgeons. After gait analysis, the proposed surgical procedures were reviewed to determine the frequency with which the treatment plans changed. A multidisciplinary team assessed the gait analysis. Results Treatment plans for 42 of the 60 patients were altered after gait analysis. Surgical treatment was recommended for 49 patients whereas 11 were recommended non-surgical treatment. Of the 253 specific surgical procedures proposed, 97 procedures were not recommended after gait analysis and 65 additional procedures were recommended after the analysis. Thus, the number of procedures proposed was reduced by 13%. A total of 318 specific surgical procedures were proposed either clinically, by gait analysis, or both. There was overall agreement between the referring orthopedic surgeons and gait analysis in 156 of these 318 procedures (49%). Gait analysis proposed more surgery for psoas tenotomy and rectus femoris transfer, whereas less surgery was proposed for other soft tissue and bony procedures. There was good accordance between gait analysis recommendations and the surgery performed subsequently (92%). Interpretation Gait analysis provided important additional information that modified preoperative surgical planning to a high degree. The high accordance between recommendations and surgery performed suggests that surgeons seriously consider the gait data and treatment recommendations.

Characteristics of recurrent musculoskeletal pain in children with cerebral palsy aged 8 to 18 years.

Aim  The aim of this study was to explore the prevalence, predictors, severity, and impact of recurrent musculoskeletal pain in children and adolescents with cerebral palsy (CP).

Physiotherapy and Physical Activity – Experiences of Adults with Cerebral Palsy, with Implications for Children

The present study is a postal survey on adults with cerebral palsy (CP) in Norway and their experiences with physiotherapy and physical activity. The respondents were 406 persons with CP, without intellectual disabilities, 49% females and 51% males between 18 and 72 years (mean = 34 years). Type, amount and experiences of physiotherapy and physical activity were reported in addition to demographic, diagnostic and locomotion data, and data on new health problems, such as deterioration, chronic pain and fatigue. Almost all the respondents (92%) received physiotherapy as children, while 40% had physiotherapy and 46% performed physical activity regularly as adults. The study documents that physical activity may contribute to prevent deterioration, chronic pain and fatigue in adults with CP; however, grade of CP is the strongest predictive variable. The strongest predictive variable, significantly associated with regular physical activity as an adult, was having learnt how to take personal responsibility for personal health during childhood. These experiences give valuable information, which could be used to make better life span follow-up programs for the persons with CP.

Coping potential and disability-sense of coherence in adults with cerebral palsy

Purpose : The aim of the present study was to investigate sense of coherence (SOC) in adults with cerebral palsy (CP) compared to the general population. Method : A questionnaire was sent to a representative sample of adults with CP, including the 3-item version of SOC and items on their life situation and follow-up programmes. The study included persons over 18 years of age with CP and without intellectual disability. The results were compared with the results from a reference group. Results : The 406 respondents with CP (48.5% females, 51.5% males) were 18-72 years of age. The distribution of the different types of CP coincided with international epidemiological studies. Mean SOC was significantly lower in the adults with CP than in the reference group. The largest difference was found in the domain of comprehensibility. The factors most important in relation to SOC were level of education, marital status, life satisfaction and fatigue. Conclusions : Early experiences of predictability, balance between challenges and personal resources and finding these challenges worthy of investment, are prerequisites for developing sense of coherence. The present study suggests that these factors are less present in early socialization of persons with CP compared to the general population, and underlines the need for follow-up programmes that emphasize existential aspects and coping strategies.

Balance in Relation to Walking Deterioration in Adults With Spastic Bilateral Cerebral Palsy

Background Balance function is central in walking, and impaired balance function may be related to walking deterioration in adults with spastic bilateral cerebral palsy (CP). Objectives The purposes of this study were: (1) to compare balance confidence, fear of falling, and balance ability in adults with spastic bilateral CP, with and without self-reported walking deterioration; (2) to characterize balance confidence, fear of falling, and balance ability across all participants; and (3) to examine the relationship between balance confidence and balance ability across all participants. Design A case-control design was used. Methods Sixteen adults from a 7-year follow-up study who had spastic bilateral CP and were under 40 years of age in the 2006 survey participated. Eight participants reported walking deterioration (cases), and 8 participants did not report walking deterioration (controls). Outcome variables were: the Activities-specific Balance Confidence (ABC) Scale, the Falls Efficacy Scale–International (FES-I), and the Balance Evaluation Systems Test (BESTest). Results No differences in any of the outcome variables were found between the cases and the controls. Across all participants, the ABC Scale and FES-I scores were 62% and 24 points, respectively. Reduced ABC Scale scores and increased FES-I scores were found when using escalators, walking in crowds, and walking on slippery surfaces. The BESTest subscale scores were 60% to 79% of the maximum score, but only 31% and 42% of the maximum score in postural responses and anticipatory adjustments, respectively. Balance confidence correlated positively with postural responses, sensory orientation, stability in gait, and BESTest total score. Limitations The lack of reliability and validity tests for the outcome variables in this study population and the small number of participants were limitations of the study. Conclusions Self-reported walking deterioration in this group could not be explained by differences in balance confidence, fear of falling, or balance ability. Across all participants, most balance problems seemed related to reduced postural responses and anticipatory adjustments.