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The level of accomplishment and satisfaction in activity and participation of adults with cerebral palsy and spastic diplegia
Abstract
Background:
Orthopaedic surgery is commonly performed in children with cerebral palsy (CP) and spastic diplegia to improve functional mobility. However, no research has quantified levels of accomplishment and satisfaction in daily activities and participation long-term after surgery. Therefore, this study aimed to investigate 1) the level of accomplishment and satisfaction of life habits in adults with CP, 2) whether there were differences between Gross Motor Function Classification System (GMFCS) levels, and 3) associations with contextual factors, functional level and frequency of pain.
Methods:
Levels of accomplishment and satisfaction in activity and participation were assessed using the Life-Habits 3.1 questionnaire in 30 adults with CP and spastic diplegia who received the first orthopaedic intervention more than 15 years ago (age: median [interquartile range (IQR)] = 27:8 [21:7-33:8] y:mo; GMFCS level I/II/III: n = 15/11/4). GMFCS and Functional Mobility Scale (FMS) assessed mobility over 5 m, 50 m and 500 m. Participants reported frequency of back pain and pain in the lower and upper limb.
Results:
On average 63% of the participants were independent and faced no difficulties in the accomplishment of all life habits. Difficulties were mostly experienced for 'mobility', 'housing' and 'recreation' (all 61%). Participants were overall satisfied, with lowest scores for 'employment' (13% dissatisfied). Between the GMFCS levels, accomplishment scores of participants with level I were significantly higher than level II. In addition, negative associations were found between accomplishment of life habits and GMFCS level, FMS, and pain on spinal level.
Conclusion:
Levels of accomplishment and satisfaction were relatively high among adults with CP who underwent orthopaedic interventions during childhood. However, negative associations between accomplishment levels and level of functioning and back pain argue for rehabilitation programs specialized on these factors. This information is imperative for physicians and allied health care professionals to guide adults with CP during ageing.
... Conflicting evidence exists related to achievements in education and employment for adults with CP (5)(6)(7)(8)(9)(10)(11). Reports of university degree completion varied widely at 2% (6), 5% (7), and 24% (8). ...
... Conflicting evidence exists related to achievements in education and employment for adults with CP (5)(6)(7)(8)(9)(10)(11). Reports of university degree completion varied widely at 2% (6), 5% (7), and 24% (8). A study from South Africa found that 50% of adults with CP had enrolled in post-secondary education, but the main source of income for 37% of the participants was governmental disability benefits (9). Employment rates for adults with CP also vary, reported at 79% (10), 68% (5), 45% (11), and 36% (6). ...
... For youth with CP, the loss of pediatric health care and school-based support systems presents enormous challenges. A lack of strong societal support mechanisms is well-documented for people with disabilities and leads many young adults with CP to struggle with independence, higher education, and employment (2,(5)(6)(7)(8)(9)(10)(11)30). These observations have been documented in other countries, such as Norway where individuals with CP had lower odds of completing upper secondary education and had higher odds of receiving a disability pension (31). ...
Introduction: The transition from pediatric health care and school systems presents enormous challenges for young adults with cerebral palsy (CP). The lack of strong societal support during this seminal life event is well-documented and leads many adults with CP to struggle with independence, higher education, and employment. Despite the relatively high prevalence of CP, information about the experiences and function of adults with CP in our society continues to be limited. The purpose of this project was to describe well-being by assessing education, employment, physical function, walking activity, and utilization of health care in an ambulatory adult cohort with CP who received specialized pediatric care at our center.
Method: In this Institutional Review Board-approved prospective study, we invited former patients from our tertiary care pediatric CP center to complete a set of patient-reported outcomes including (1) the Patient-Reported Outcomes Measurement Information System domains of physical function and pain interference, (2) the Satisfaction with Life Scale, and a project-specific demographic questionnaire about education, employment, income, independence, pain, and health care utilization. Participants also wore a pedometer for 8 days to monitor community walking activity. Chi-squared pairwise or t-tests were used as appropriate to compare survey responses and walking activity data between three groups: participants who self-reported, those who reported by proxy, and published normative data from age-matched typically developing adult (TDA) samples.
Results: One hundred twenty-six adults with CP consented to participate; 85 self-reported [age 29.7 ± 4.3 years; Gross Motor Function Classification System: I (28%), II (47%), and III, (25%)] and 41 reported by proxy [age 29.7 ± 4.1 years; Gross Motor Function Classification System: I (10%), II (68%), and III (22%)]. For the group who self-reported, high school graduation rate (99%) was similar to TDA (92%; p = 0.0173) but bachelor's degree achievement rate (55%) was higher than TDA (37%; p < 0.001). Despite more advanced education, the unemployment rate in this group was higher than national levels at 33% and was associated with high utilization of Social Security Disability Insurance (33%). Within the self-reporting group, 13% required a caregiver. For the group who reported by proxy, educational levels (73% high school graduates, 0 bachelor's degree) were lower than the general population (p < 0.001) and unemployment was higher than the national level, at 64%. Unemployment in this group was associated with high utilization of Social Security Disability Insurance (85%). Within the proxy-reporting group, 71% required a caregiver. The full cohort demonstrated lower levels of physical function according to the Patient-Reported Outcomes Measurement Information System and less community walking activity compared with TDA references (p < 0.001). This cohort of adults with CP reported significantly higher frequency of chronic pain (48 vs. 12% for TDA; p < 0.001), but less pain interference with daily activities than TDA based on Patient-Reported Outcomes Measurement Information System results (p < 0.001). This cohort reported good to excellent overall health (93%) and high utilization of primary care (98%), but limited utilization of specialty care, specifically orthopedic care (21%) and physical therapy (15%).
Discussion: This cohort of adults with CP had similar levels of education as the general population, but had relatively high rates of unemployment, caretaker need, and Social Security Disability Insurance utilization. Although chronic pain was frequent, the impact of pain on work and independent living did not exceed reports from a typically developing reference. Better targeted societal resources for adults with physical disabilities are urgently needed to allow equitable access to employment, promote opportunities for independence, and enable full participation in community life.
... Thirty adults with CP participated in the baseline study, 11 Personal characteristics and contextual factors were recorded for all participants. ...
... Levels of participation, satisfaction and activity accomplishment were assessed with the Life-Habits 3.1 questionnaire (Life-H). This questionnaire, which has been used in both TD 15 and CP adults, 11,[18][19][20][21] has been shown to be a valid 17 and reliable 15,17 indicator as to levels of accomplishment and satisfaction in daily activities and participation in the community. Level of accomplishment was scored in terms of difficulty ('no difficulty', 'with difficulty', 'accomplished by a proxy', 'not accomplished' and 'not applicable') as well as type of assistance ('no assistance', 'assistive device', 'adaption' and 'human assistance required to accomplish it'). ...
... The Functional Mobility Scale (FMS) was used to classify participants' level of mobility. The FMS has been shown to be a valid and reliable measure to assess functional mobility in individuals with CP, 22,23 and has also been used to describe adults with CP. 11,18,19 The FMS includes scores for three different distances: 5m, 50m and 500m, measured within the daily environment (performance level) and considering the use of an assistive device. The scale is based on a six-level ordinal grading system as follows: ...
Background: Insight into the day-to-day challenges faced by adults living with Cerebral Palsy (CP) in low-to-middle income countries (LMICs) will enable support towards healthy ageing in this population.
Objectives: To determine changes in level of pain, functional mobility and accomplishment as well as satisfaction in daily life of ambulant adults with CP living in a LMIC over a six-year period, compared to typically developed (TD) adults. In addition, to determine associations with individual characteristics.
Methods: Twenty-eight adults with CP and spastic diplegia (median [interquartile ranges] age = 39.0[34.0‒45.7] years; Gross Motor Function Classification System level I/II/III: n = 11/12/5) participated in this study, together with 28 matched TD adults. Levels of accomplishment and satisfaction were assessed with the Life-Habits questionnaire, functional mobility was determined with the Functional Mobility Scale and (back, lower and upper limb) pain frequency was gauged with a standardized questionnaire.
Results: Life-Habits accomplishment and satisfaction scores of adults with CP remained unchanged during the six-year follow-up, with 79% being independent and 100% satisfied. Functional mobility decreased and related to the total accomplishment score. No change in pain frequency was observed, but adults with CP experienced more pain than their peers. Back pain was significantly associated with the total satisfaction score.
Conclusions: Relative high levels of accomplishment and satisfaction and no change in pain frequency were noted during a six-year follow-up study of adults with CP living in a LMIC. The importance of exercise/rehabilitation programs to reduce pain and maintain functional mobility in persons ageing with CP was highlighted.
... p = 0.001). 27 Accomplishment and satisfaction with participation were not associated with frequency of upper limb or lower limb pain. 26,27 Pain assessment tools ...
... 27 Accomplishment and satisfaction with participation were not associated with frequency of upper limb or lower limb pain. 26,27 Pain assessment tools ...
Aim
To describe the prevalence and incidence of pain, identify prognostic factors for pain, determine psychometric properties of tools to assess pain, and evaluate effectiveness of interventions for reducing pain among adults with cerebral palsy (CP).
Method
Six databases were searched to identify studies published since 1990 in any language that met eligibility criteria defined for each objective. Titles, abstracts, and full texts were screened by two independent reviewers.
Results
Sixty‐three studies were identified; 47 reporting prevalence, 28 reporting prognostic factors, four reporting psychometric properties, five evaluating intervention effectiveness. Pain prevalence ranged from 24% to 89%. Prevalence was higher among adults with CP than in adults without it. Communication function, sex, and age were prognostic factors for pain prevalence. Numerical, verbal, and pictorial rating scales were valid for assessing pain intensity in adults with CP. Pharmacological and surgical interventions had no effect on pain. An active lifestyle and sports intervention reduced pain in adults with CP compared with usual care.
Interpretation
Many adults with CP experience pain, although prevalence estimates vary considerably. The quality of evidence for prognostic factors and interventions is very low to low. There is a lack of evidence about effective pain management among adults with CP.
... e health-related quality of life (HRQoL) of adolescents and young adults with cerebral palsy has recently received attention in literature [3,4]. Researchers have pointed out that the level of functional activity of the individual with CP plays an important role in the overall perception of their HRQoL [5][6][7]. With growing emphasis on the inclusion of individuals with CP into mainstream activities, it has been pointed out that it is important to be able to measure both function [8,9] and HRQoL of these individuals [3]. ...
... e GMFCS is a validated tool that has been used repeatedly as a measure of motor function in individuals with cerebral palsy [19]. e decision to limit the inclusion criteria in the present study up to level III GMFCS was based on the fact that previous studies have shown individuals with GMFCS level IV and level V to have a compromised motor function that would require assistance [6,19,25]. ...
Background:
There is evidence that gross motor function impacts the health-related quality of life of young adults with cerebral palsy. This study aimed to assess gross motor function, oral health and oral health-related quality of life (OHRQoL), and the relationship between them in young adults with cerebral palsy.
Methods:
The sample comprised 46 individuals aged between 13 and 17 years with Gross Motor Function Classification Scores (GMFCS) ranging from level I to level III. The individuals and their parents were administered an Arabic version of the child perception questionnaire for adolescents. Parental and child perception scores, DMFT, and gingival index were compared across GMFCS levels using the one-way ANOVA and Scheffe's post hoc test.
Results:
Children with level III GMFCS had a significantly higher child perception score (CPQ) and parental perception score (PPQ) than those with level I or level II scores. There was a significant association between function (GMFCS) and the CPQ score in children (p = 0.016). No significant associations were found between the CPQ score and either dental caries (DMFT) or gingival bleeding (GI) scores. Children with GMFCS level III had a significantly higher DMFT (p = 0.016). No significant associations were found between the CPQ score and either dental caries (DMFT) or gingival bleeding (GI) scores. Children with GMFCS level III had a significantly higher DMFT (p = 0.016). No significant associations were found between the CPQ score and either dental caries (DMFT) or gingival bleeding (GI) scores. Children with GMFCS level III had a significantly higher DMFT (.
Conclusion:
Motor function has a significant impact on both the oral health and the OHRQoL of adolescents and young adults with spastic cerebral palsy.
... However, despite CP being a non-progressive condition, aging can lead to a decline in motor function. This decline, when combined with factors such as fatigue, pain, and environmental barriers, often results in decreased participation in daily life activities 4,5 . Over time, these changes have been shown to push individuals with CP towards more passive activities that involve fewer people, which can negatively affect their self-perception and create feelings of social exclusion 6 , ultimately impacting their health-related quality of life (HRQoL). ...
International studies indicate that gross motor function can influence the health-related quality of life (HRQoL) of adults with Cerebral Palsy (CP). However, HRQoL is a complex construct that may also be influenced by cultural factors. Objective: To verify the association between Gross Motor Function (GMF) and HRQoL in a group of Brazilian adults with CP. Methods: This quantitative, cross-sectional and exploratory study included 30 individuals with CP, aged between 18 and 54 years old, living in a small/medium-sized municipality. Gross motor function was assessed using the the Gross Motor Function Classification System (GMFCS), while HRQoL was measured using the Short-Form Health Survey (SF-36), divided into physical and mental health summaries. Results: Better GMF explained 37% (adjusted R² = 0.373) of the variability in HRQoL related to functional capacity, and 22% (adjusted R² = 0.221) of the physical aspects summary. Conversely, a more compromised GMF explained 15% (adjusted R² = 0.146) of the variability in HRQoL related to emotional aspects. Conclusions: Better GMF partially explains higher HRQoL related to greater physical functioning or summary of physical aspects. On the other hand, greater impairment in GMF partially explains higher HRQoL related to emotional aspects in adults with CP residing in a Brazilian municipality. These results align with findings from international studies.
Keywords Cerebral Palsy; Adults; Motor Skills, Quality of Life
International studies indicate that gross motor function can influence the health-related quality of life (HRQoL) of adults with Cerebral Palsy (CP). However, HRQoL is a complex construct that may also be influenced by cultural factors. Objective: To verify the association between Gross Motor Function (GMF) and HRQoL in a group of Brazilian adults with CP. Methods: This quantitative, cross-sectional and exploratory study included 30 individuals with CP, aged between 18 and 54 years old, living in a small/medium-sized municipality. Gross motor function was assessed using the the Gross Motor Function Classification System (GMFCS), while HRQoL was measured using the Short-Form Health Survey (SF-36), divided into physical and mental health summaries. Results: Better GMF explained 37% (adjusted R² = 0.373) of the variability in HRQoL related to functional capacity, and 22% (adjusted R² = 0.221) of the physical aspects summary. Conversely, a more compromised GMF explained 15% (adjusted R² = 0.146) of the variability in HRQoL related to emotional aspects. Conclusions: Better GMF partially explains higher HRQoL related to greater physical functioning or summary of physical aspects. On the other hand, greater impairment in GMF partially explains higher HRQoL related to emotional aspects in adults with CP residing in a Brazilian municipality. These results align with findings from international studies.
Keywords Cerebral Palsy; Adults; Motor Skills, Quality of Life
Objectives:
Functional surgery (FS) is often used to correct congenital or acquired deformities in neurological patients. Along with functional results, short- and medium-term patient satisfaction should always be considered a key goal of surgery and rehabilitation. The aim of this study is to assess the short to medium-term satisfaction of patients who underwent FS and its correlation with perceived improvements.
Methods:
Invitation to an anonymous online survey was sent via e-mail to all neurological adult patients or caregivers of children who underwent lower or upper limb FS over the 2018-2020 period. The survey investigated patients' satisfaction with the surgery and the variation in pain, ADLs, level of independence, body image, self-esteem, social interaction skills, participation in social events, leisure activities and sports, and use of orthoses or walking aids. Descriptive data analysis was performed. Correlations were assessed using Kendall's tau.
Results:
122 out of 324 adults and 53 out of 163 children's caregivers filled out the questionnaire, with a response rate approaching 40%. Eighty-three percent of adult respondents and 87% of the children's caregivers were satisfied or very satisfied in the short and medium terms and reported their expectations had been met. Satisfaction was significantly correlated (p < 0.01) with improvements in functional abilities, social participation, self-esteem, and pain reduction. Half of the adults and 40% of children stopped using their orthoses or replaced them with lighter ones. Dissatisfaction and worsened conditions were reported by <10% of the respondents.
Conclusion:
According to patients and caregivers, FS was satisfactory in the short and medium terms, following improvements in all the ICF domains for most patients.
Purpose:
The aim of this study was to investigate the prevalence and level of disability due to pain, health-related quality of life (HRQoL) and mental health in adolescents and adults with cerebral palsy (CP), living in a low-to-middle income country (LMIC), compared to matched typically developing (TD) peers, and to explore associations with individual characteristics.
Materials and methods:
This case-control study included 31 adolescents and 30 adults with CP (gross motor function classification system [GMFCS] Level I-V) and matched TD peers. Assessment tools used were a pain questionnaire, the Oswestry Disability Index (ODI), Short-Form Health Survey (SF-36v2), Hospital Anxiety and Depression Scale (HADS), and General Self Efficacy (GSE) scale.
Results:
Both CP cohorts reported more frequent pain in their lower limbs, higher level of disability due to pain (total ODI score) and lower perceived physical HRQoL compared to TD peers, while their mental health (mental HRQoL, HADS, and GSE) was not different.
Conclusions:
Despite the physical challenges faced by adolescents and adults with CP living in urban South Africa, the mental health scores showed no difference compared to TD peers. Care should be taken to maintain this positive mental state during ageing across their lifespan.IMPLICATIONS FOR REHABILITATIONThe prognosis of individuals with cerebral palsy (CP) has improved over the last three decades and CP should therefore be considered as a lifelong condition.Adolescents and adults with CP living in urban South Africa reported a higher level of disability due to pain and lower physical health-related quality of life compared to typically developing peers, while their level of depression, anxiety, and self-esteem was not different.These results were similar to findings of studies conducted in high-income countries, though it cannot be generalised to other low to middle-income countries with different cultural and government systems.In order to promote healthy ageing across their lifespan, intervention programmes should be considered to improve physical well-being, and care should be taken to maintain their positive mental health.
Aim
To determine the long‐term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age.
Method
One hundred and fifty‐one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I–IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13‐year follow‐up (13‐year follow‐up: n=98). Scores (range 0–10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level.
Results
Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid‐ and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years.
Interpretation
Individuals with CP experience increasing difficulties in participation in their mid‐ and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment.
What this paper adds
Many individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation.
Difficulty in participation increases in the mid‐ and late 20s for individuals with CP.
Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV.
Orthopedic surgery (OS) plays an important role in the management of cerebral palsy (CP). The objectives of OS are to optimize functions and prevent deformity. Newer developments in OS for CP include emphasis on hip surveillance, minimally invasive procedures, use of external fixators instead of plates and screws, better understanding of lever arm dysfunctions (that can only be corrected by bony OS), orthopedic selective spasticity-control surgery, and single-event multilevel lever arm restoration and anti spasticity surgery, which have led to significant improvements in gross motor function and ambulation, especially in spastic quadriplegia, athetosis, and dystonia. The results of OS can be dramatic and life altering for the person with CP and their caregivers if it is performed meticulously by a specialized surgical team, at the appropriate age, for the correct indications, employing sound biomechanical principles and is followed by physician-led, protocol based, intensive, multidisciplinary, institutional rehabilitation, and long term followup. However, OS can be a double-edged sword, and if performed less than optimally, and without the supporting multidisciplinary medical and rehabilitation team, expertise and infrastructure, it often leads to significant functional worsening of the person with CP, including irretrievable loss of previous ambulatory capacity. OS must be integrated into the long term management of the person with CP and should be anticipated and planned at the optimal time and not viewed as a “last resort” intervention or failure of rehabilitation. This instructional course lecture reviews the relevant contemporary principles and techniques of OS in CP.
Background:
Three-dimensional gait analysis (3DGA) is commonly used to assess the effect of orthopedic single-event multilevel surgery (SEMLS) in children with spastic cerebral palsy (CP).
Purpose:
The purpose of this systematic review is to provide an overview of different orthopedic SEMLS interventions and their effects on 3DGA parameters in children with spastic CP.
Methods:
A comprehensive literature search within six databases revealed 648 records, from which 89 articles were selected for the full-text review and 24 articles (50 studies) included for systematic review. The Oxford Centre for Evidence-Based Medicine Scale and the Methodological Index for Non-Randomized Studies (MINORS) were used to appraise and determine the quality of the studies.
Results:
Except for one level II study, all studies were graded as level III according to the Oxford Centre for Evidence-Based Medicine Scale. The MINORS score for comparative studies (n = 6) was on average 15.7/24, while non-comparative studies (n = 18) scored on average 9.8/16. Nineteen kinematic and temporal-distance gait parameters were selected, and a majority of studies reported improvements after SEMLS interventions. The largest improvements were seen in knee range of motion, knee flexion at initial contact and minimal knee flexion in stance phase, ankle dorsiflexion at initial contact, maximum dorsiflexion in stance and in swing phase, hip rotation and foot progression angles. However, changes in 3DGA parameters varied based on the focus of the SEMLS intervention.
Discussion:
The current article provides a novel overview of a variety of SEMLS interventions within different SEMLS focus areas and the post-operative changes in 3DGA parameters. This overview will assist clinicians and researchers as a potential theoretical framework to further improve SEMLS techniques within different SEMLS focus groups. In addition, it can also be used as a tool to enhance communication with parents, although the results of the studies can't be generalised and a holistic approach is needed when considering SEMLS in a child with spastic CP.
To evaluate the activity and participation levels of adults with spastic diplegia 17-26 years after selective dorsal rhizotomy; to investigate relationships between subjects' functioning and age, socio-economic-status, level of satisfaction and their perceptions of the post-operative outcomes.
Observational follow-up study.
Thirty-one subjects with spastic diplegia, age range 21-44 years, who underwent selective dorsal rhizotomy between 1981 and 1991.
A semi-structured interview was used to gather data on patients' characteristics and long-term experiences after the operation. The Functional Mobility Scale and Life-Habit questionnaire were completed.
Based on the Functional Mobility Scale 84% of subjects were reported as independent for a distance of 5 m, and 61% for 50 and 500 m. Eighty percent were independent in accomplishing all life habits, with most problems found for Mobility and Recreation. This was in agreement with the subjects' perception, with strong correlations between Life-Habit questionnaire accomplishment and satisfaction levels. No significant associations were found between functioning and age at selective dorsal rhizotomy, current age and socio-economic status.
More than 15 years after selective dorsal rhizotomy, adults with spastic diplegia showed high levels of functioning, and similar levels of satisfaction with life habits. The majority had positive feelings about the neurosurgical procedure, although there is a need for better follow-up after subjects leave school.
To assess participation and health-related quality of life in adults with bilateral spastic cerebral palsy, and explore associations with self-efficacy.
Cross-sectional study.
A sample of 56 adults with bilateral spastic cerebral palsy (mean age 36.4 (standard deviation 5.8) years; 62% male).
Daily activities and social participation (Life Habits 3.0), health-related quality of life (SF-36 Health Survey), demographic and clinical characteristics, and self-efficacy (General Self-Efficacy Scale (GSES-12)) were assessed. Associations were studied using multivariate logistic regression analyses.
At least 60% of the sample had difficulties with mobility, recreation and housing, and 44% had difficulty with personal care and employment. They perceived low health-related quality of life for physical functions, but not for mental functions. Corrected for demographic and clinical characteristics, general self-efficacy explained 49% of the variance in outcome on social participation, and the subscale Effort (GSES-12) 32% of the variance for the physical health-related quality of life and 16% of the mental health-related quality of life.
A significant number of adults with bilateral spastic cerebral palsy encountered difficulties in social participation and had a low perceived health-related quality of life for physical functions. Higher general self-efficacy or a greater willingness to expend effort in achieving behaviour was related to better participation and a higher physical and mental health-related quality of life.
To present a conceptual model of disablement adapted from the WHO model and to conduct a pilot study with a measurement tool (LIFE-H) of the concepts of life habits and handicap situations.
Content validity and test-retest reliability study.
General community. Participants: A panel of 12 experts of rehabilitation for the process of content validity and 49 individuals with spinal cord disorders (adults and children) for the reliability study. Outcomes measures: a person's life habits (activities of daily living and social roles).
The LIFE-H questionnaire was designed to assess the handicap situations observed in daily life of individuals with disability. The experts concluded that the LIFE-H items covered most of a person's life habits (ADL and social roles) and that it could be used to determine the appearance of handicap situations. The LIFE-H total score showed a good level of reliability for the children and the adult samples (ICC = 0.73 and 0.74, respectively). Taken individually, a majority of life habit categories have shown a moderate to high reliability level (ICC > or = 0.50) while a few life habit categories such as the interpersonal relationship or nutrition showed a lower reliability level.
The development of LIFE-H allows fulfillment of the need to determine the disruptions in life habits of persons with disabilities.
Because of the availability of new knowledge about the neurobiology of developmental brain injury, information that epidemiology and modern brain imaging is providing, the availability of more precise measuring instruments of patient performance, and the increase in studies evaluating the efficacy of therapy for the consequences of injury, the need for reconsideration of the definition and classification of cerebral palsy (CP) has become evident. Pertinent material was reviewed at an international symposium participated in by selected leaders in the preclinical and clinical sciences. Suggestions were made about the content of a revised definition and classification of CP that would meet the needs of clinicians, investigators, and health officials, and provide a common language for improved communication. With leadership and direction from an Executive Committee, panels utilized this information and have generated a revised Definition and Classification of Cerebral Palsy. The Executive Committee presents this revision and welcomes substantive comments about it.
To obtain better insight into the health issues of young adults with cerebral palsy.
Cross-sectional.
Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine).
Adults with cerebral palsy participated in a physical examination and a semi-structured interview assessing several health issues and utilization of healthcare. Rehabilitation physicians completed a questionnaire on impairments they recognized as being related to cerebral palsy.
In the patient sample, pain (59%) and joint deformities (19-57%) were observed most frequently. Evidence of a decrease in the utilization of healthcare services at adult age emerged. Lower gross motor function and cognitive level appeared to be determinants of motor and speech impairments and of the utilization of 3 allied healthcare services. Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults.
Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care.
Aims:
The aim of this study was to provide a comprehensive update on (1) the overall prevalence of cerebral palsy (CP); (2) the prevalence of CP in relation to birthweight; and (3) the prevalence of CP in relation to gestational age.
Method:
A systematic review and meta-analysis was conducted and reported, based on the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) statement. Population-based studies on the prevalence of CP in children born in 1985 or after were selected. Statistical analysis was carried out using computer package R, version 2.14.
Results:
A total of 49 studies were selected for this review. The pooled overall prevalence of CP was 2.11 per 1000 live births (95% confidence interval [CI] 1.98-2.25). The prevalence of CP stratified by gestational age group showed the highest pooled prevalence to be in children weighing 1000 to 1499g at birth (59.18 per 1000 live births; 95% CI 53.06-66.01), although there was no significant difference on pairwise meta-regression with children weighing less than 1000g. The prevalence of CP expressed by gestational age was highest in children born before 28 weeks' gestation (111.80 per 1000 live births; 95% CI 69.53-179.78; p<0.0327).
Interpretation:
The overall prevalence of CP has remained constant in recent years despite increased survival of at-risk preterm infants.
This article reviews the current best evidence for musculoskeletal interventions in children with ambulatory cerebral palsy (CP). The effectiveness of interventions in CP must first consider what CP and its associated pathophysiology are and take into account the heterogeneity and natural history of CP to put definitions of "effectiveness" into perspective. This article reviews the current standards of the definition and classification of CP, discusses the natural history and specific goals for the management of ambulatory CP, as well as the outcome measures available to measure these goals. The current best evidence of effectiveness is reviewed for specific interventions in children with ambulatory CP including spasticity management with botulinum toxin A injections and selective dorsal rhizotomy; multilevel orthopaedic surgery to address contractures and bony deformity; and the role of gait analysis for surgical decision-making before orthopaedic surgery.
To investigate the prevalence and co-occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning.
Fifty-six adults with SBCP without severe cognitive impairment participated (35 males, 21 females; mean age 36y 5mo, SD 5y 10mo; Gross Motor Function Classification System level I [13], II [28], III [11], IV [4]). Chronic pain (>3mo), severity and nature of fatigue (Fatigue Severity Scale; Multidimensional Fatigue Inventory), and depressive symptoms (Center for Epidemiological Studies Depression Scale) were assessed. Associations were explored using multivariable logistic regression analyses.
The study sample had a higher prevalence of chronic pain (75% vs 39%; p<0.001), mean fatigue (Fatigue Severity Scale, 4.4 [SD 1.3] vs 2.9 [SD 1.1]; p<0.001), and prevalence of depressive symptoms (25% vs 12%; p=0.004) than Dutch healthy reference samples. Chronic pain and severe fatigue co-occurred in 34% and in combination with depressive symptoms in 16% of the participants. Severity of fatigue was associated with depressive symptoms (OR 3.38; p<0.01). Chronic pain and fatigue were not associated with limitations in daily functioning.
These findings suggest that adults with SBCP are severely affected by chronic pain, fatigue, and depressive symptoms, in addition to their spastic paresis.
Skeletal muscle deformity is common in children with spastic cerebral palsy (CP), but the underlying mechanisms are unclear. This review explores some possible factors which may influence the development of muscle deformity in CP. Normal muscle function and growth appear to depend on the interaction of neuronal, endocrinal, nutritional, and mechanical factors, and also on the development of an appropriate balance between muscle protein synthesis and degradation, and between the development of contractile and non-contractile components. In this context, the changes seen in muscle in children with CP are reviewed and discussed. It is suggested that the development of muscle deformity in children with CP may be related to a multifactorial impairment of muscle growth, on which adaptation of the extracellular matrix due to altered loading may be imposed.
This study examined the influence of selected personal and environmental factors on leisure participation in adults with cerebral palsy (CP).
A group of 145 adults with CP (18-41 years old, 51% male) responded to questionnaires regarding 1) socio-demographic and health factors, 2) life habits (Life-H: short version 3.1) and 3) the environment (Measure of the Quality of the Environment: version 2.0). A chi2 statistic (p<0.05) estimated the association between 1) socio-demographic and health factors and the environment and 2) the level of leisure activity participation.
Most participants (mean age=28 years) lived with their parents. Leisure activities were their principal occupation. Mobility and participation were positively associated. The environment (e.g. accompanying services, adapted transport, cultural services and computers) facilitated leisure for those with a high or moderate participation level. Individuals with low participation perceived the environment as having no influence.
Adults with CP who are more mobile participate more in leisure activities. A positive perception of the environment (facilitating leisure participation) likely reflects the individual's ability to benefit from the environment, whereas a neutral view of the environment may reflect the fact that other factors, such as mobility limitations, are of greater relevance to leisure participation.
The aim of this study was to explore subjective well-being and satisfaction with life in general and with participation, activities, and health, in adults with cerebral palsy (CP). A randomized sample of 50 individuals was drawn from a sample of 465 previous outpatients of a regional social paediatric centre in southern Germany. A psychological measure for well-being (Bern Questionnaire on Subjective Well-Being, adult form [BSW/A]) and a sociomedical measure (Life Satisfaction Checklist [LiSat-11]) were applied as outcome measures. Twenty-five individuals from 35 responders (nine males, 16 females; mean age 28y, SD 2y 7mo, range 25-33y) were evaluated completely. Nineteen participants had bilateral and six had unilateral spastic types of CP (Gross Motor Function Classification System Levels I n=5, II n=5, III n=5, IV n=8, and V n=2). Eighteen individuals had no or only minor intellectual disabilities. Subjective well-being and general satisfaction with life were not impaired in adults with CP. Joy of life (a subscale of the BSW/A) was even increased. Satisfaction with some areas of participation was reduced compared with a reference and clinical samples from Sweden. In conclusion, subjective well-being and general satisfaction with life are not decreased in adults with CP. The different levels of satisfaction with areas of participation in German and Swedish individuals with CP may be explained by differences of social inclusion.
The aim of this study was to investigate the validity of the Rotterdam Transition Profile (RTP) to describe the transition process from childhood to adulthood in young adults with cerebral palsy (CP). Participants were recruited from rehabilitation centres and hospital departments of rehabilitation. In total, 81 young adults (47 males, 34 females) with CP and normal intelligence participated (mean age 20y 5mo [SD 1y 4mo] range 18-22y; 95% spastic CP, 48% hemiplegia, 38% diplegia, 14% quadriplegia; 78% Gross Motor Function Classification System Level I, 83% Manual Ability Classification System Level I). The RTP and the Assessment of Life Habits questionnaire are used to measure transition and functioning in daily activities and participation. Almost all participants were in the transition process or had reached an independent adult lifestyle (ranging from 60-100%, housing 42%). Compared with able-bodied peers, young adults with CP lagged behind in their development in housing (25 vs 36%; p<0.05), employment (33 vs 49%; p<0.05), and intimate relationships (37 vs 76%; p<0.01). Associations were found between the phase of transition and age, parents' level of education, gross motor functioning, manual ability, level of education, and level of functioning in daily activities and participation. The RTP is a valid tool to gain more insight into the transition process, at the individual as well as at group level.
The aim of this study was to validate the expanded and revised Gross Motor Function Classification System (GMFCS-E&R) for children and youth with cerebral palsy using group consensus methods. Eighteen physical therapists participated in a nominal group technique to evaluate the draft version of a 12- to 18-year age band. Subsequently, 30 health professionals from seven countries participated in a Delphi survey to evaluate the revised 12- to 18-year and 6- to 12-year age bands. Consensus was defined as agreement with a question by at least 80% of participants. After round 3 of the Delphi survey, consensus was achieved for the clarity and accuracy of the descriptions for each level and the distinctions between levels for both the 12- to 18-year and 6- to 12-year age bands. Participants also agreed that the distinction between capability and performance and the concept that environmental and personal factors influence methods of mobility were useful for classification of gross motor function. The results provide evidence of content validity of the GMFCS-E&R. The GMFCS-E&R has utility for communication, clinical decision making, databases, registries, and clinical research.
The ambulatory status of 74 neonatal intensive care unit survivors with cerebral palsy, excluding those with central nervous system malformations and syndromes, was assessed at eight years of age. Detailed examinations were completed at two and eight years of age; of the 47 who were sitting by two years, 46 became ambulatory, and a total of 47 of the 74 children became ambulatory. The clinical type of cerebral palsy at two years of age related significantly to eight‐year ambulation. However, between two and eight years the diagnosis was changed for 18 children. At two years of age the tonic labyrinthine, asymmetrical and symmetrical tonic neck and Moro reflexes related significantly to ambulation; in five of 27 children not walking, these reflexes were absent by two years of age. Foot placement and/or parachute reactions at two years were found in more than one‐third of children not walking. Multivariate analysis determined that age at sitting explained 91 per cent of the variance in ambulation. No other variables, combined with sitting, increased this prediction.
RÉSUMÉ
Pronostic précoce de la déambulation chez les I.M.C. survivant de centres de soins intensifs néo‐nataux
Les capacités de déambulations de 74 I.M.C. survivant d'une unité de soins intensifs néo‐nataux ont été appréciéés à l'age de huit ans. Des examens détaillés de la position assise, des reflexes et réactions, et de la classification de l'I.M.C. ont été effectués aux ages de deux et huit ans. La déambulation fut définie comme la capacité de marche autonome sur 15 mètres, avec ou sans prothèse, avec ou sans aide de marche aux membres supérieurs. 47 enfants (64 pour cent) parvinrent à la déambulation, dont 46 des 47 enfants capables de s'asseoir à deux ans. Le type clinique de l'I.M.C. à deux ans était relié significativement à la déambulation à huit ans dans la majorité des cas. A deux ans, le reflexe tonique assymétrique du cou, le reflexe symétrique du cou, les reflexes toniques labyrinthiques et de Moro étaient reliés significativement à la déambulation tandis que les reflexes de redressement du cou et d'extension croisée ne l'étaient pas. Les réactions de placement du pied et/ou de parachute à deux ans étaient notées chez plus d'un tiers des enfants ne marchant pas. L'analyse multivariée révèlait que l'age de la station assise expliquait 91 pour cent de la variance de deambulation. La déambulation avant deux ans etait le meilleur prédicteur de la deambulation à huit ans.
ZUSAMMENFASSUNG
Prognose für das Erlangen der Gehfähigkeit bei Kindern mit Cerebralparese, die als Neugeborene auf einer Intensivstation behandelt wurden
Bei 74 Kindern mit Cerebralparese (CP), die eine Neugeborenenintensivpflege iiberlebt hatten, wurde im Alter von acht Jahren die Gehfähigkeit untersucht. Mit zwei und acht Jahren wurden genaue Untersuchungen des Sitzens, der Reflexe und Reaktionen und der Klassifikation der CP durchgeführt. Die Gehfähigkeit wurde definiert als die Fähigkeit, 15m selbständigen laufen, mit oder ohne Schienen und/oder Gehhilfen der oberen Extremität. 47 Kinder (64 Prozent) wurden gehfähig und 46 von den 47 Kindern, die mit zwei Jahren saßen, wurden gehfähig. In der Mehrzahl der Fälle korrelierte der klinische Typ der CP im Alter von zwei Jahren signifikant mit der Gehfähigkeit im Alter von acht Jahren. Mit zwei Jahren fand sich eine signifikante Relation zwischen asymmetrisch tonischem Halsreflex, symmetrisch tonischem Halsreflex, tonischem Labyrinthreflex und Moro‐Reflex mit der Gehfähigkeit, während der Halsstellreflex und der Extensor‐thrust‐reflex nicht korrelierten. Schreitbewegungen und/oder Abstützreaktionen mit zwei Jahren wurden bei mehr als einem Drittel der Kinder gefunden, die nicht laufen konnten. Die Multivarianzanalyse zeigte, daß das Alter, in dem die Kindern sitzen konnten, in 91 Prozent ausschlaggebend war für die Unterschiede beim Laufenlernen. Gehfähigkeit vor dem zweiten Lebensjahr war der beste Indikator für eine Gehfähigkeit mit acht Jahren.
RESUMEN
Se evaluó a los ocho años de edad la situación ambulatoria de 74 recién nacidos con parálisis cerebral, supervivientes de cuidados intensivos. Se realizaron exámenes completos a los dos y ochos años de edad. De los 47 que se sentaban a los dos años, 46 Ilegaron a caminar y un total de 47 de los 74 se hacieron ambulatorios. El tipo clinico de parálisis cerebral a los dos años de edad estaba en relación significativa con la deambulación a los ocho ños. Sin embargo, entre los dos y los ocho años el diagnóstico se cambió en 18 niños. A los dos años de edad los reflejos tónico laberíntico, simétrico y asimétrico de cuello y el de Moro estaban en relación significativa con la deambulación. En cinco de 27 niños que no andaban, estos reflejos estaban ausentes a los dos años de edad. Las reacciones de la escalera y de paracaidismo a los dos años de edad, se hallaron en mas de un tercio de los niños que no andaban. Un análisis multivariado determinó que la edad de la sedestación explicaba el 91 por ciento de la varianza en la deambulación. Ninguna otra variable, en combinación con la sedestación, aumentó esta predictión.
To examine the nature and scope of pain in persons with cerebral palsy (CP).
Standardized interviews to assess demographics, pain experiences, and the impact of pain on activities.
Ninety-three adults with CP recruited from medical clinics at the University of Washington and local residential and community housing for persons with developmental disabilities.
Weekly and 3-month pain intensities, chronic pain grade, interference in daily activities caused by pain, and pain-exacerbating and pain-relieving factors.
Sixty-two subjects (67%) reported one or more areas of pain of > or =3 months' duration. Lower extremity pain and back pain were the most common complaints. Fifty-six percent of the subjects reporting pain indicated it occurred daily. Mean average pain intensity, graded on a scale of 0 (no pain) to 10 (pain as bad as could be), was 3.16 (SD = 2.45) in the preceding week and 4.45 (SD = 2.34) in the previous 3 months. Approximately 53% of subjects reporting pain indicated their average pain was of moderate to severe intensity (average pain rated as > or =5). Using Von Korff's Chronic Pain Grade classification system, the majority of subjects who reported pain fell into either grade I (low disability, low pain intensity; 51%) or grade II (low disability, high pain intensity; 39%). Subjects reported many factors that exacerbate pain (eg, stress or weather) or decrease it (eg, exercise or rest).
The data suggest that pain is common in adults with CP. In many subjects, pain levels were moderate to intense.
To study dependence in daily activities in adults with congenital disorders living in the community by interviewing them with an interval of 5 years.
Thirty-one subjects (20 men, 11 women) aged 24-43 years at the second assessment. Twenty-two subjects had cerebral palsy, and nine had spina bifida. Interviews in the subjects' homes were conducted using Functional Independence Measure (FIM), Instrumental Activity Measure (IAM), and a questionnaire concerning life satisfaction. Rasch analysis was used for joint calibration of physical FIM- and IAM-items to obtain measure values (logits) for items and persons.
Most subjects were independent in FIM items, but usually dependent in IAM items, except Mobility outdoors and Simple meal. The level of dependence increased significantly between the two assessments for four self-care items in FIM, Stairs and all IAM items except Mobility outdoors and Cleaning. For 13 subjects the overall level of dependence increased significantly for self-care between the two assessments. Most subjects were satisfied in life in general, but satisfaction in self-care ADL decreased between the two assessments.
The increased dependence in daily activities demonstrated may reflect reduced capacity but also changes in preferences and interests as well as the social situation.
We devised a new Functional Mobility Scale (FMS) to describe functional mobility in children with cerebral palsy, as an aid to communication between orthopaedic surgeons and health professionals. The unique feature of the FMS is the freedom to score functional mobility over three distinct distances, chosen to represent mobility in the home, at school and in the wider community. We examined the construct, content, and concurrent validity of the FMS in a cohort of 310 children with cerebral palsy by comparing the FMS to existing scales and to instrumented measures of physical function. We demonstrated the scale to be both valid and reliable in a consecutive population sample of 310 children with cerebral palsy seen in our tertiary referral center. The FMS was useful for discriminating between large groups of children with varying levels of disabilities and functional mobility and sensitive to detect change after operative intervention.
To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning.
In the CP Transition study, adolescents and young adults aged 16-20 years, diagnosed with CP without severe learning disabilities (n =103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed.
About 20-30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and social participation, explaining 70% and 66% of the variance in outcome respectively.
A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age.
The objectives of this study were: (1) to examine the psychometric properties of the Assessment of Life Habits (LIFE-H) for children; and (2) to draw a profile of the level of participation among children of 5 to 13 years of age with various impairments. The research team adapted the adult version of the LIFE-H in order to render it more appropriate for the daily life experiences of children. Content validity was verified by an expert panel of 29 people, made up of parents, paediatric clinicians, and researchers. Reliability and construct validity of the LIFE-H for children (interview-administered form) was tested during an experiment that comprised three sessions of interviews with a group of 94 parents of children with disabilities (36 males, 58 females; mean age 8y 10mo [SD 2y 6 mo]; diagnostic groups: cerebral palsy, myelomeningocoele, sensory-motor neuropathy, traumatic brain injury, and developmental delay). Overall, the LIFE-H showed high intrarater reliability with intraclass correlation coefficient values of 0.78 or higher for 10 out of 11 categories. The correlations between the LIFE-H and the tools used in pediatric rehabilitation varied, and categories with similar constructs generally led to higher correlations. The psychometric properties of the LIFE-H are appropriate and its content allows a complete description of participation among children with disabilities.
The influence of early life factors on the bone mineral density of children has been identified, however the contribution of these determinants may vary.
The study investigated determinants of bone mineral content (BMC) in South African children of mixed ancestral origin.
Early life data including birth weight, maternal alcohol consumption and smoking during pregnancy were collected on 9-year-old children of mixed ancestral origin (n = 64). Grip strength was measured, and physical activity, housing density and dietary data were collected. Whole body BMC (WB BMC), fat-free soft tissue and fat tissue were measured using dual energy X-ray absorptiometry.
Maternal alcohol consumption during pregnancy was associated with WB BMC, however after adjusting for possible confounders, this was no longer significant. When combined with gender, gestational age and maternal BMC in a multiple regression, maternal alcohol consumption during pregnancy could explain 20% of the variance in the WB BMC, however when current height was included in the model, the contribution of the other factors was insignificant. There was however a significant correlation between current height and birth weight (r = 0.34; p < 0.01) and alcohol consumption during pregnancy (r = 0.34; p < 0.05). A model consisting of current factors such as age, weight, gender, grip strength and calcium intake was able to explain 81.5% of the variance. Housing density was negatively correlated with WB BMC (r =-0.11; p = 0.05).
These data suggest that although early life factors may contribute indirectly to the bone mass of children of mixed ancestral origin, the contribution of current factors is greater. In addition, environmental factors such as housing density have a direct effect on bone mass, independent of body size.