Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age-mates.

OBJECTIVE: To describe the social, intimate and sexual relationships of Dutch adolescents with cerebral palsy compared with their able-bodied age mates. DESIGN: Cross-sectional study. SUBJECTS: A total of 103 adolescents with cerebral palsy without severe learning problems aged 16-20 years. METHODS: We used a structured interview and questionnaires to assess subject characteristics such as age, type of cerebral palsy, gross motor function and level of education. Main outcome measures on social, intimate and sexual relationships are the Life-Habits questionnaire, the Vineland Adaptive Behaviour Scale, and a structured interview developed for Dutch studies in able-bodied persons and persons with spina bifida. Experienced competence was assessed with the Dutch version of the Self-Perception Profile of Adolescents and the Physical Disability Sexual and Body Esteem Scale. These data were compared with matching reference data, mainly from able-bodied (Dutch) adolescents. RESULTS: Approximately 30% of the subjects functioned socially below their age level. Adolescents with cerebral palsy find it difficult to develop intimate relationships and they have less sexual experience than their able-bodied age mates. CONCLUSION: Although adolescents with cerebral palsy do have social relationships, it is difficult for them to develop intimate relationships. They perceive various barriers, but seem to have a positive self-perception.     

Determinants of functioning of adolescents and young adults with cerebral palsy

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning.

Method. 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.

Results. 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.

Conclusion. 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.     

Determinants of functioning of adolescents and young adults with cerebral palsy

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning.

Method. 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.

Results. 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.

Conclusion. 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.     

Social media experiences of adolescents and young adults with cerebral palsy who use augmentative and alternative communication

Purpose: This pilot study aimed to expand the current understanding of how adolescents and young adults with cerebral palsy (CP) and complex communication needs use social media.

Method: An online focus group was used to investigate the social media experiences of seven individuals with CP who used Augmentative and Alternative Communication (AAC). Questions posed to the group related to social media: (a) advantages; (b) disadvantages; (c) barriers; (d) supports; and (e) recommendations.

Result: Adolescents with CP who use AAC used a range of communication media to participate in daily interactions, including social media. An analysis of the focus group interaction revealed that the participants used social media to: bypass the constraints of face-to-face interactions; communicate for a number of reasons (e.g. maintain relationships, share experiences); and support independent leisure (e.g. playing games, looking at pictures/videos). Despite the advantages, the participants discussed barriers including limitations related to AAC technologies, social media sites and literacy skills.

Conclusion: The results suggest that service providers should implement interventions to support social media use, including enhancement of linguistic, operational and strategic competence. Technology manufacturers should focus on improving the designs of AAC apps and social media sites to facilitate access by individuals who require AAC.     

Personal and environmental factors contributing to participation in romantic relationships and sexual activity of young adults with cerebral palsy

Purpose: To study determinants of romantic relationships and sexual activity of young adults with cerebral palsy (CP), focusing on personal and environmental factors. Method: A cohort study was performed with 74 young adults (46 men; 28 women) aged 20–25 years (SD 1.4) with CP (49% unilateral CP, 76% GMFCS level I, 85% MACS level I). All participants were of normal intelligence. Romantic relationships, sexual activity (outcome measures), personal and environmental factors (associated factors) were assessed. Associations were analyzed using logistic regression analyses. Results: More females than males with CP were in a current romantic relationship. Self-esteem, sexual esteem and feelings of competence regarding self-efficacy contributed positively to having current romantic relationships. A negative parenting style contributed negatively. Age and gross motor functioning explained 20% of the variance in experience with intercourse. In addition, sexual esteem and taking initiative contributed significantly to intercourse experience. Conclusions: For young adults with CP personal factors (20–35% explained variances) seem to contribute more than environmental factors (9–12% explained variances) to current romantic relationships and sexual experiences. We advice parents and professionals to focus on self-efficacy, self-esteem and sexual self-esteem in development of young adults with CP.

Implications for Rehabilitation

• The severity of gross motor functioning contributed somewhat to sexual activities, but not to romantic relationships.

• High self-efficacy, self-esteem and sexual self-esteem can facilitate involvement in romantic and sexual relationships for young adults with CP.

     

Effectiveness of virtual reality in children and young adults with cerebral palsy: a systematic review of randomized controlled trial

BackgroundCerebral palsy (CP) is one of the main causes of disability in childhood. Virtual reality (VR) has been used as a treatment option in this population, however its effectiveness is unclear.ObjectiveTo evaluate the effectiveness of VR in patients with CP.MethodsWe conducted electronic searches in EMBASE, MEDLINE, Cochrane library, PEDro, AMED, PsycoINFO, and LILACS databases and trial site registries such as ClinicalTrials.gov and ICTRP. We included randomized controlled trials that tested the use of VR alone or in combination with other interventions compared to more conventional rehabilitation or usual care in individuals with CP. The primary outcomes were upper and lower limb function, postural control, and balance. The secondary outcomes included global motor function, perception, cognition and spatial functions, motivation, motor learning, and adverse events. Two independent reviewers extracted and assessed included articles for risk of bias using the Cochrane risk of bias tool. We use a meta-analysis with random effect model whenever possible. We analyzed the quality of evidence using theGRADE approach.ResultsWe included 38 trials (pooled n = 1233 participants) in this review. There is very low quality of evidence that VR plus conventional rehabilitation is better than conventional rehabilitation for upper limb function. There is also very low quality evidence that VR alone is no better than conventional rehabilitation for upper and lower limb function. No adverse events were observed among the 10 trials that provided information on this outcome.ConclusionAt present we have very limited to limited confidence in effect estimation for utilization of VR in this population. Future studies may change our confidence in results and effect estimates.Protocol registrationPROSPERO CRD 42018102759.     

Health issues in young adults with cerebral palsy: towards a life-span perspective.

OBJECTIVE: To obtain better insight into the health issues of young adults with cerebral palsy. DESIGN: Cross-sectional. SUBJECTS: 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). METHODS: 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. RESULTS: 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. CONCLUSION: 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.     

Social support and adaptation outcomes in children and adolescents with cerebral palsy

Abstract

Objectives: This study had two main objectives: first, to describe the social support and psychological maladjustment of children and adolescents with cerebral palsy (CP); and second, to test a mediation model where psychological maladjustment was hypothesized to mediate the link between social support and health-related quality of life (HRQL). In addition, the moderating role of gender and age was examined for this mediation model. Methods: Self- and proxy-report questionnaires on the aforementioned variables were administered to a sample of 96 children/adolescents with CP and 118 healthy controls, as well as one of their parents. Univariate and multivariate analyses of covariance were conducted to examine differences in social support and psychological maladjustment, respectively. PROCESS computational tool was used for path analysis-based mediation, moderation and moderated mediation analyses. Results: Children/adolescents with CP reported lower levels of social support than their healthy peers, but no significant differences emerged in terms of their psychological maladjustment. For children/adolescents with CP, internalizing and externalizing problems were found to mediate the link between social support and HRQL, and these indirect effects were not conditional upon age or gender. Discussion: Children and adolescents with CP are likely have more negative perceptions of social support, but not necessarily more psychological adjustment problems than their healthy, able-bodied peers. Results further suggest that interventions targeting social support perceptions may positively affect HRQL outcomes in children/adolescents with CP, through the improvement of internalizing and externalizing dimensions of their psychological adjustment.

• Implications for Rehabilitation

• Social support perceptions are important intervention targets in psychosocial rehabilitation with children and adolescents with CP.

• Children and adolescents with CP do not necessarily present increased psychological maladjustment.

• Interventions targeting these children and adolescents’ social support may promote their psychological adjustment and health-related quality of life.

• Developmental specificities, such as age and gender differences, should be considered when planning and implementing psychosocial interventions.

     

Unmet needs and health care utilization in young adults with cerebral palsy

PURPOSE: To gain insight into the unmet needs and utilization of health care of young adults with cerebral palsy (CP) and to explore relations between unmet needs, health care utilization and subject characteristics. METHOD: A cross-sectional study was performed in 29 young adults with CP without severe learning disabilities (IQ > 70). Subject characteristics such as age, gender, limb distribution, level of gross motor functioning, level of education and perceived participation and autonomy were measured. Outcome measures were the Southampton Needs Assessment Questionnaire, Impact on Participation and Autonomy and a questionnaire on health care utilization. RESULTS: Young adults with CP reported unmet needs mostly on information (79%), mobility (66%) and health care (66%). About half of the participants visited a rehabilitation physician (52%) or a physical therapist (55%) in the past year. Participants with lower levels of gross motor functioning were found to have more unmet needs and visited various health care professionals more often than young adults with higher levels of gross motor functioning. However, participants with higher levels of gross motor functioning still reported several unmet needs. CONCLUSIONS: Although young adults with CP frequently receive treatment from health care professionals, they indicate unmet needs with respect to several areas such as information on diagnosis, functional mobility and formal health care. In the treatment of young adults with CP, attention should be paid to these aspects.     

Unmet needs and health care utilization in young adults with cerebral palsy

Purpose. To gain insight into the unmet needs and utilization of health care of young adults with cerebral palsy (CP) and to explore relations between unmet needs, health care utilization and subject characteristics.

Method. A cross-sectional study was performed in 29 young adults with CP without severe learning disabilities (IQ > 70). Subject characteristics such as age, gender, limb distribution, level of gross motor functioning, level of education and perceived participation and autonomy were measured. Outcome measures were the Southampton Needs Assessment Questionnaire, Impact on Participation and Autonomy and a questionnaire on health care utilization.

Results. Young adults with CP reported unmet needs mostly on information (79%), mobility (66%) and health care (66%). About half of the participants visited a rehabilitation physician (52%) or a physical therapist (55%) in the past year. Participants with lower levels of gross motor functioning were found to have more unmet needs and visited various health care professionals more often than young adults with higher levels of gross motor functioning. However, participants with higher levels of gross motor functioning still reported several unmet needs.

Conclusions. Although young adults with CP frequently receive treatment from health care professionals, they indicate unmet needs with respect to several areas such as information on diagnosis, functional mobility and formal health care. In the treatment of young adults with CP, attention should be paid to these aspects.     

Reasons for hospital admissions among youth and young adults with cerebral palsy

Young NL, McCormick AM, Gilbert T, Ayling-Campos A, Burke T, Fehlings D, Wedge J. Reasons for hospital admissions among youth and young adults with cerebral palsy.

Objective

To identify the most common reasons for acute care hospital admissions among youth (age range, 13–17.9y) and young adults (age range, 23–32.9y) with cerebral palsy (CP).

Design

We completed a secondary analysis of data from the Canadian Institute for Health Information (CIHI) to determine the most frequently observed reasons for admissions and the associated lengths of stay (LOS).

Setting

Participants were identified from 6 children's treatment centers in Ontario, Canada.

Participants

Health records data from youth with CP (n=587) and young adults with CP (n=477) contributed to this study.

Interventions

Not applicable.

Main Outcome Measures

The most common reasons for hospital admission, relative frequencies of admissions for each reason, and mean LOS were reported.

Results

The analysis of CIHI records identified epilepsy and pneumonia as the top 2 reasons for admissions in both age groups. Both age groups were commonly admitted because of infections other than pneumonia and urinary tract infections (UTIs), gastrointestinal (GI) problems such as malabsorption, and mental illness. The reasons that were unique to youth included orthopedic and joint-related issues, other respiratory problems, and scoliosis. In young adults, mental illness was the third most common reason for admission, followed by lower GI or constipation problems, malnutrition or dehydration, upper GI problems, fractures, and UTIs.

Conclusions

This article provides important clinical information that can be used in the training of physicians and health care providers, and to guide future planning of ambulatory care services to support the clinical management of persons with CP over their lifespan.     

Youth and young adults with cerebral palsy: their use of physician and hospital services

OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health insurance data for outpatient physician visits and hospital admissions for a 4-year period. SETTING: Six children's treatment centers in Ontario, Canada. PARTICIPANTS: The sample included 587 youth and 477 adults with CP identified from health records. Youths were 13 to 17 years of age, and adults were 23 to 32 years of age at the end of the data range. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We computed the annual rates of outpatient physician visits and hospitalizations per 1000 persons and compared these with rates for the general population. RESULTS: Annual rates of outpatient physician visits were 6052 for youth and 6404 for adults with CP, 2.2 times and 1.9 times higher, respectively, than rates for age-matched peers (P<.01). Specialists provided 28.4% of youth visits but only 18.8% of adult visits. Annual hospital admission rates were 180 for youth and 98 for adults with CP, 4.3 times and 10.6 times higher, respectively, than rates for age-matched peers (P<.01). CONCLUSIONS: It appears that youth and adults with CP continue to have complex care needs and rely heavily on the health care system. Comprehensive services are essential to support their health as they move into youth and adulthood. However, there appear to be gaps in the adult health care system, such as limited access to specialist physicians.     

Relationship between quality of life and functional status of young adults and adults with cerebral palsy

Purpose.?The aim of this study was investigate the relation between health related quality of life (HRQoL) and functional status in young adult or adult cerebral palsied individuals.

Methods.?The study included 45 cerebral palsied subjects who were divided into two groups as young adults (n?=?21, group 1) and adults (n?=?24, group 2), over the age 15 years. Gross Motor Function Classification System (GMFCS), Functional Independence Measurement (FIM), Physical Mobility Scale (PMS), Nottingham Health Profile (NHP), Visual Analogue Scale (VAS) were used as outcome measures.

Results.?In group 1, GMFCS and PMS scores were significantly correlated with total the total score of FIM (p?<?0.05). Although total FIM, PMS, LS and GMFCS scores were not correlated with the total NHP score (p?>?0.05), pain subscale of NHP was significantly correlated with self care and mobility subscales of FIM (p?<?0.05). Also, self care, mobility, locomotion subscales and total score of FIM were highly correlated with the physical activity subscale of NHP (p?<?0.05). In group 2, our findings were also similar to those of young adults when the relations between total NHP score and total FIM, PMS, LS and GMFCS were investigated (p?>?0.05) and also some subscales of FIM and NHP presented high correlations in between. In addition, there were significant differences between the groups in GMFCS, LS and locomotion and self care subscales of FIM (p?<?0.05).

Conclusion.?Although HRQoL in young cerebral palsied individuals seems to be more effected by parameters related to physical condition, in cerebral palsied adults psychological and emotional aspects may be more important indicators related to HRQoL. For that reasons, more population specific measures have to be developed for in-depth analysis of these factors.     

Easy-to-use clinical measures of walking ability in children and adolescents with cerebral palsy: a systematic review

Objective: The aims of this systematic review were to identify quick, simple and easy-to-use measures of walking ability currently used to assess children and adolescents with cerebral palsy (CP), and to evaluate the clinical utility and psychometric properties of these measures.

Data sources: The PubMed, CINAHL, SPORTDiscus and MEDLINE databases were searched up to March 2015.

Review methods: Two independent reviewers rated the methodological quality of the identified measures using the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist.

Results: The 1-Minute Walk Test, Timed Up and Go Test, ABILOCO-Kids, Gillette Functional Assessment Questionnaire and Functional Mobility Scale were identified. Each measure can be carried out within 5?min with limited equipment, and does not require examiner training. There was “limited” to “strong” evidence on the reliability and validity of these measurements, whereas evidence on measurement error and responsiveness was limited.

Conclusion: The identified measures in this systematic review may be considered for the clinical measurement of walking ability in children and adolescents with CP in a quick, simple and easy-to-use manner. However, there is overall a lack of evidence on the psychometric properties of these tools. The lack of evidence regarding measurement error and responsiveness might limit their value in measuring change over time.

• Implications for Rehabilitation

• The ABILOCO-Kids, 1-Minute Walk Test, Timed Up and Go Test, Gillette Functional Assessment Questionnaire, Functional Mobility Scale can be performed within 5?min with limited equipment, and do not require examiner training for measuring of walking ability in children and adolescents with cerebral palsy.

• The clinicians should use these measurement tools carefully when assessing change over time as the available evidence on measurement error and responsiveness is limited.

• When clinicians use these measurement tools, the psychometric properties reported in this systematic review should be considered in the selection of tools and subsequent interpretation of results.

     

The self-esteem of adolescents with cerebral palsy

This paper examined the self-esteem of 22 adolescents with cerebral palsy (CP) (11 girls, 11 boys) who were matched by sex, school, age, and IQ with 22 nondisabled adolescents. Subjects completed the Tennessee Self-Concept Scale (TSCS), the Family Adaptability and Cohesion Evaluation Scale II (FACES II), and a demographic questionnaire. Multivariate analysis of variance revealed that the girls with CP scored significantly lower than the boys with CP, the nondisabled boys, and nondisabled girls on physical self-esteem, and the nondisabled girls and boys with CP on social self-esteem. The scores of the boys with CP were similar to those of the nondisabled groups. This differential effect of disability on males and females is discussed in terms of the interactionist theory and the implications for occupational therapy.