Development of Romantic Relationships and Sexual Activity in Young Adults With Cerebral Palsy: A Longitudinal Study

Wiegerink DJ, Stam HJ, Gorter JW, Cohen-Kettenis PT, Roebroeck ME, Transition Research Group Southwest Netherlands. Development of romantic relationships and sexual activity in young adults with cerebral palsy: a longitudinal study.

Objectives

To describe the development of romantic relationships and sexual activity of young adults with cerebral palsy (CP), to investigate whether this development is associated with demographic and physical characteristics, and to compare the sexual activity of this group with an age-appropriate Dutch reference population.

Design

Prospective longitudinal study with 3 biannual assessments.

Setting

Eight rehabilitation centers and departments in the southwestern regions of The Netherlands.

Participants

Young adults (N=103; 61 men, 42 women) with CP without cognitive disabilities (age range at first assessment, 16-20y; 82% Gross Motor Function Classification System level I or II).

Interventions

Not applicable.

Main Outcome Measures

Sexual interest, romantic relationships, and sexual activity.

Results

We observed a significant increase in dating in young adults with CP during the 4-year period; however, the experience in romantic relationships did not increase largely during this period. Young adults with a lower education level began dating later than those with higher levels. Significantly more women were in current romantic relationships than men. During the 4 years, participants' sexual experience increased significantly for all sexual milestones evaluated. Level of gross motor function was associated significantly with intercourse experience. Compared with an age-appropriate Dutch reference population, young adults with CP participated at a lower level in romantic relationships and sexual activities, but had equal sexual interest at the final assessment.

Conclusions

Young ambulatory adults with CP had similar sexual interests and had increasing experiences with romantic relationships and sexual activities during the transition from late adolescence to young adulthood. However, the percentage of young adults with CP in current romantic relationships was low, especially for men.     

Changes in Gross Motor Function and Health-Related Quality of Life in Adults With Cerebral Palsy: An 8-Year Follow-Up Study

Objective

To describe changes in gross motor function and health-related quality of life (HRQOL) in adults with cerebral palsy (CP).

Design

An 8-year follow-up survey.

Setting

Participants who completed the baseline survey in 2003 were invited.

Participants

The sample of adults with CP (N=54; response rate=37%) included a “younger group” (group 1; n=31; age, 23–27y; 15 women) and an “older group” (group 2; n=23; age, 33–42y; 10 women).

Interventions

Not applicable.

Main Outcome Measures

The Gross Motor Function Classification System (GMFCS), Self-Rated Health (SRH), the Health Utility Index Mark III (HUI₃), and the Assessment of Quality of Life (AQoL).

Results

Eight years after the initial survey, 27% of the participants in the combined group had deteriorations on the GMFCS, 52% on the SRH, 44% on the HUI₃, and 25% on the AQoL. Members of group 1 reported stable scores as they made the transition to adulthood, while many of the group 2 members experienced declines, with relative risk of 1.47 (95% confidence interval [CI], 0.16–2.24) on the GMFCS, 1.36 (95% CI, 0.83–2.23) on the SRH, 1.19 (95% CI, 0.66–2.15) on the HUI₃, and 3.17 (95% CI, 1.12–9.00) on the AQoL.

Conclusions

Although much attention has focused on the transitions of persons with CP during their late teens and early 20s, this research found that deteriorations in the GMFCS levels and the HRQOL were most evident in adults in their late 20s and 30s. More detailed longitudinal studies are required to evaluate the longer-term health outcomes among persons with CP into their 30s and beyond.     

Evaluation of a Device to Exercise Hip Extensor Muscles in Children with Cerebral Palsy: A Clinical and Field Study

This research includes the effectiveness of a tricycle (hip extensor tricycle) designed to isolate and exercise the hip extensor muscles in children with cerebral palsy. Five children diagnosed with cerebral palsy were given hip extensor tricycles for home use during an 8-week test period. The hip extensor strength and gait pattern of the subjects were recorded at 2-week intervals. Additional recorded information included the time and duration of subject use and a parent evaluation that noted subjective physical and psychological improvements. A panel of experts judged that the gait patterns of four subjects improved during the course of the study. There was an assignable cause for the lack of improvement in the fifth subject. The results of the strength testing were found to be inconclusive. The subjects used the device on a regular basis and enjoyed doing so. Parent evaluations indicated that the use of the hip extensor tricycle improved the subjects' physical condition, coordination, sense of accomplishment, and self esteem. It is recommended that future research implement a longer test period along with improved hip extensor strength measurement methods and focus on improvements in evaluation of gait and physical condition.     

Diffusion Tensor Imaging Study of the Response to Constraint-Induced Movement Therapy of Children With Hemiparetic Cerebral Palsy and Adults With Chronic Stroke

Objective

To investigate the relationship of white matter integrity and path of the corticospinal tract (CST) on arm function before and after constraint-induced (CI) movement therapy in children with hemiparetic cerebral palsy (CP) and adults with chronic stroke.

Design

Study 1 used a multiple-baseline pre-post design. Study 2 was a randomized controlled trial.

Setting

Outpatient rehabilitation laboratory.

Participants

Study 1 included children with hemiparetic CP (n=10; mean age ± SD, 3.2±1.7y). Study 2 included adults with chronic stroke (n=26; mean age ± SD, 65.4±13.6y) who received either CI therapy or a comparison therapy.

Interventions

Children in study 1 received CI therapy for 3.5h/d for 15 consecutive weekdays. Adults in study 2 received either CI therapy or a comparison therapy for 3.5h/d for 10 consecutive weekdays.

Main Outcome Measures

Diffusion tensor imaging was performed to quantify white matter integrity. Motor ability was assessed in children using the Pediatric Motor Activity Log–Revised and Pediatric Arm Function Test, and in adults with the Motor Activity Log and Wolf Motor Function Test.

Results

Participants in both studies improved in real-world arm function and motor capacity. Children and adults with disrupted/displaced CSTs and children with reduced fractional anisotropy values were worse on pretreatment tests of motor function than participants with unaltered CSTs. However, neither integrity (fractional anisotropy) nor distorted or disrupted path of the CST affected motor improvement after treatment.

Conclusions

Participants who had reduced integrity, displacement, or interruption of their CST performed worse on pretreatment motor testing. However, this had no effect on their ability to benefit from CI therapy. The results for children and adults are consistent with one another.     

Towards the Development of Clinical Measures for Spinal Cord Injury Based on the International Classification of Functioning,Disability and Health With Rasch Analyses

Objectives

To determine whether the International Classification of Functioning, Disability and Health (ICF) categories relevant to spinal cord injury (SCI) can be integrated in clinical measures and to obtain insights to guide their future operationalization. Specific aims are to find out whether the ICF categories relevant to SCI fit a Rasch model taking into consideration the dimensionality found in previous investigations, local item dependencies, or differential item functioning.

Design

All second-level ICF categories collected in the Development of ICF Core Sets for SCI project in specialized centers within 15 countries from 2006 through 2008.

Setting

Secondary data analysis.

Participants

Adults (N=1048) with SCI from the early postacute and long-term living context.

Interventions

Not applicable.

Main Outcome Measures

Two unidimensional Rasch analyses: one for the ICF categories from body functions and body structures components and another for the ICF categories from the activities and participation component.

Results

Results support good reliability and targeting of the ICF categories in both dimensions. In each dimension, few ICF categories were subject to misfit. Local item dependency was observed between ICF categories of the same chapters. Group effects for age and sex were observed only to a small extent.

Conclusions

The validity of ICF categories to develop measures of functioning in SCI for clinical practice and research is to some extent supported. Model adjustments were suggested to further improve their operationalization and psychometrics.     

Use of the International Classification of Functioning,Disability and Health (ICF) to identify preliminary comprehensive and brief core sets for multiple sclerosis

Purpose. To identify the preliminary comprehensive and brief core sets for multiple sclerosis (MS), in a Delphi process using the International Classification of Functioning, Disability and Health (ICF).

Method. Focus groups and a consensus process were used to identify ICF core sets for MS. This included: preliminary ICF studies; empirical patient data collection for 101 MS participants; review of the evidence base and treatment in MS literature followed by a Delphi exercise with 23 physicians and allied health professionals in Melbourne, Australia.

Results. One hundred and forty-four (40%) second level ICF categories were selected by 23 participants in three rounds. The comprehensive MS ICF core set includes 34 (24%) categories from the component ‘body function’, six (4%) categories from ‘body structures’, 68 (47%) from ‘activities and participation’ and 36 (25%) from the component ‘environmental’ factors. Ten categories in ‘personal factors’ in MS were also suggested by the participants after intensive discussions. The brief set comprises 30 categories, 21% of categories in the comprehensive core set.

Conclusion. Consensus expert opinion can use ICF categories to identify the core set for MS which reflects disease complexity and care burden for persons' with MS. Further research is needed to identify ICF categories of relevant personal factors to improve our understanding of the large social and cultural variance associated with them.     

Measuring the Reliability and Construct Validity of the Pediatric Evaluation of Disability Inventory–Computer Adaptive Test (PEDI-CAT) in Children With Cerebral Palsy

Objective

The purpose of this study was to (1) investigate the construct validity and (2) test-retest reliability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) in children with cerebral palsy (CP).

Determining the Most Robust Dimensional Structure of Categories from the International Classification of Functioning,Disability and Health Across Subgroups of Persons With Spinal Cord Injury to Build the Basis for Future Clinical Measures

Objective

To determine the most robust dimensional structure of the International Classification of Functioning, Disability and Health (ICF) categories relevant to spinal cord injury (SCI) across subgroups of lesion level, health care context, sex, age, and resources of the country.

Design

A multidimensional between-item response Rasch model was used. The choice of the dimensions was conceptually driven using the ICF components from the functioning chapters and splits of the activity and participation component described in the ICF.

Setting

Secondary analysis of data from an international, cross-sectional, multicentric study for the Development of ICF Core Sets for Spinal Cord Injury.

Participants

Persons with SCI (N=1048) from the early postacute and long-term living context from 14 middle/low- and high-resource countries.

Interventions

Not applicable.

Main Outcome Measure

Ratings of categories of the ICF relevant for SCI were analyzed.

Results

Five models were tested on the complete sample and 5 subgroups. The overall reliability of all models and reliability within dimensions of the unidimensional and 2-dimensional models were good to excellent. The ICF categories spread well along the disability scale. The model fit improvement from the unidimensional to the 2-dimensional and from the 2-dimensional to the 3-dimensional model was significant in all groups (P<.0001). The improvement, however, from a unidimensional to a 2-dimensional structure was markedly better than from a 2-dimensional to a 3-dimensional one.

Conclusions

We propose that a 2-dimensional structure separating body functions and body structures from the activity and participation categories should serve as a basis for developing clinical measures in SCI in the future.     

Classification of employment factors according to the International Classification of Functioning,Disability and Health in patients with neuromuscular diseases: A systematic review

Purpose.?A systematic evaluation of the literature to identify health and contextual factors associated with employment in patients with neuromuscular diseases (NMD) and to perform a best evidence synthesis, taking into account the design of studies, methodological quality and the statistical significance of findings.

Method.?Publications were retrieved by a computerised search in medical and psychological databases. Two reviewers assessed titles and abstracts first and assessed the quality of the remaining full text publications independently as well. Of the residual publications, health and contextual factors associated with employment in patients with NMD were extracted. The factors found were included in a recently developed expanded International Classification of Functioning, Disability and Health scheme.

Results.?Six hundred and sixty-two titles and abstracts were screened. The main reason to exclude a title and/or abstract was the absence of the study population selected: Facioscapulohumeral Muscular Dystrophy (FSHD), Hereditary Motor and Sensory Neuropathy (HMSN) & Myotonic Dystrophy (MD). Of the remaining 20 full-text publications, eight publications fulfilled the inclusion criteria: two repeated survey designs and six cross-sectional studies. Factor extraction resulted in 94 factors related to employment. Ten factors in five publications were indicative for an association with employment status: Disease related factors HMSN, MD & NMD in general), factors related to functions (physical functions, muscle power functions), general personal factors (age, gender and education), work related personal factors (type of occupation, and expressed interest in employment by patients with NMD).

Conclusion.?In the best evidence synthesis ten factors were indicative for an association with employment status in patients with NMD in five publications with good to excellent methodological quality.     

Systematic Review of Clinical Guidelines Related to Care of Individuals With Cerebral Palsy as Part of the World Health Organization Efforts to Develop a Global Package of Interventions for Rehabilitation

ObjectiveThe World Health Organization’s (WHO) Rehabilitation 2030 initiative is working to develop a set of evidence-based interventions selected from clinical practice guidelines for Universal Health Coverage. As an initial step, the WHO Rehabilitation Programme and Cochrane Rehabilitation convened global content experts to conduct systematic reviews of clinical practice guidelines for 20 chronic health conditions, including cerebral palsy.Data SourcesSix scientific databases (Pubmed, EMBASE, Scopus, Web of Science, PEDro, CINAHL), Google Scholar, guideline databases, and professional society websites were searched.Study SelectionA search strategy was implemented to identify clinical practice guidelines for cerebral palsy across the lifespan published within 10 years in English. Standardized spreadsheets were provided for process documentation, data entry, and tabulation of the Appraisal of Guidelines for Research and Evaluation (AGREE II) tool. Each step was completed by 2 or more group members, with disagreements resolved by discussion. Initially, 13 guidelines were identified. Five did not meet the AGREE II established threshold or criteria for inclusion. Further review by the WHO eliminated 3 more, resulting in 5 remaining guidelines.Data ExtractionAll 339 recommendations from the 5 final guidelines, with type (assessment, intervention, or service), strength, and quality of evidence, were extracted, and an International Classification of Functioning, Disability and Health Functioning (ICF) category was assigned to each.Data SynthesisMost guidelines addressed mobility functions, with comorbid conditions and lifespan considerations also included. However, most were at the level of body functions. No guideline focused specifically on physical or occupational therapies to improve activity and participation, despite their prevalence in rehabilitation.ConclusionsDespite the great need for high quality guidelines, this review demonstrated the limited number and range of interventions and lack of explicit use of the ICF during development of guidelines identified here. A lack of guidelines, however, does not necessarily indicate a lack of evidence. Further evidence review and development based on identified gaps and stakeholder priorities are needed.