M. E. Roebroeck

PERCEIVED BARRIERS TO AND FACILITATORS OF PHYSICAL ACTIVITY IN YOUNG ADULTS WITH CHILDHOOD-ONSET PHYSICAL DISABILITIES

OBJECTIVEnTo explore the main barriers to and facilitators of physical activity in young adults with childhood-onset physical disabilities.nnnDESIGNnQualitative study using focus groups.nnnPARTICIPANTSnSixteen persons (12 men and 4 women) aged 22.4 (standard deviation 3.4) years, of whom 50% were wheelchair-dependent, participated in the study. Eight were diagnosed with myelomeningocele, 4 with cerebral palsy, 2 with acquired brain injury and 2 with rheumatoid arthritis.nnnMETHODSnThree focus group sessions of 1.5 h were conducted using a semi-structured question route to assess perceived barriers to and facilitators of physical activity. Tape recordings were transcribed verbatim and content analysed. According to the Physical Activity for People with a Physical Disability model, barriers and facilitators were subdivided into personal factors and environmental factors.nnnRESULTSnParticipants reported several barriers related to attitude and motivation. In addition, lack of energy, existing injury or fear of developing injuries or complications, limited physical activity facilities, and lack of information and knowledge, appeared to be barriers to physical activity. Fun and social contacts were mentioned as facilitators of engaging in physical activity, as well as improved health and fitness.nnnCONCLUSIONnYoung adults with childhood-onset physical disabilities perceived various personal and environmental factors as barriers to or facilitators of physical activity. These should be taken into account when developing interventions to promote physical activity in this population.

Prevalence of Fatigue, Pain, and Affective Disorders in Adults With Duchenne Muscular Dystrophy and Their Associations With Quality of Life

OBJECTIVESnTo assess the prevalence of fatigue, pain, anxiety, and depression in adults with Duchenne muscular dystrophy (DMD), and to analyze their relationship with health-related quality of life.nnnDESIGNnCross-sectional study.nnnSETTINGnHome of participants.nnnPARTICIPANTSnAdults (N=80) with DMD.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnFatigue was assessed with the Fatigue Severity Scale; pain with 1 item of the Medical Outcomes Study 36-Item Short-Form Health Survey and by interview; and anxiety and depression by using the Hospital Anxiety and Depression Scale. Health-related quality of life was assessed using the World Health Organization Quality of Life Scale-Brief Version. Associations between these conditions and quality of life were assessed by means of univariate and multivariate logistic regression analyses.nnnRESULTSnSymptoms of fatigue (40.5%), pain (73.4%), anxiety (24%), and depression (19%) were frequently found. Individuals often had multiple conditions. Fatigue was related to overall quality of life and to the quality-of-life domains of physical health and environment; anxiety was related to the psychological domain.nnnCONCLUSIONSnFatigue, pain, anxiety, and depression, potentially treatable symptoms, occur frequently in adults with DMD and significantly influence health-related quality of life.

Can a lifestyle intervention programme improve physical behaviour among adolescents and young adults with spastic cerebral palsy? A randomized controlled trial

Optimal physical behaviour is important, as physical inactivity contributes to functional deterioration and reduced social participation. Nevertheless, research showed that persons with cerebral palsy (CP) have low physical activity levels. The objective of this study is to evaluate the effectiveness of a lifestyle intervention programme on physical behaviour.

A lifestyle intervention improves fatigue, mental health and social support among adolescents and young adults with cerebral palsy: focus on mediating effects

Objective: To evaluate the effect of a lifestyle intervention on fatigue, participation, quality of life, gross motor functioning, motivation, self-efficacy and social support, and to explore mediating effects of physical behavior and physical fitness. Design: A randomized controlled trial with intention to treat analysis. Setting: Rehabilitation centers in university hospitals in the Netherlands. Subjects: Adolescents and young adults with spastic cerebral palsy. Interventions: A six-month lifestyle intervention that consisted of physical fitness training combined with counseling sessions focused on physical behavior and sports participation. Main measures: Fatigue, social participation, quality of life and gross motor functioning. Results: The lifestyle intervention was effective in decreasing fatigue severity during the intervention (differenceu2009=u2009–6.72, pu2009=u20090.02) and in increasing health-related quality of life with respect to bodily pain (differenceu2009=u200915.14, pu2009=u20090.01) and mental health (differenceu2009=u20098.80, pu2009=u20090.03) during follow-up. Furthermore, the domain participation and involvement of the social support increased during both the intervention (differenceu2009=u20095.38, pu2009=u20090.04) and follow-up (differenceu2009=u20094.52, pu2009=u20090.03) period. Physical behavior or physical fitness explained the observed effects for 22.6%, 9.7% and 28.1% of improvements on fatigue, bodily pain and mental health, but had little effect on social support (2.6%). Interpretation: Fatigue, bodily pain, mental health and social support can be improved using a lifestyle intervention among adolescents and young adults with cerebral palsy. Furthermore, substantial mediating effects were found for physical behavior and physical fitness on fatigue, bodily pain and mental health.

Course of employment in adults with cerebral palsy over a 14-year period

To explore the course of employment in adults with cerebral palsy (CP) over 14 years, and to identify subgroups at risk for unemployment.

Responsiveness of isokinetic dynamometry parameters, pain and activity level scores to evaluate changes in patients with capsulitis of the shoulder

Objective: To determine the responsiveness to change of isokinetic dynamometry of the shoulder and to compare this responsiveness with outcome measures of pain and activity level. Design: Responsiveness was evaluated as the change in outcome after intra articular steroid injection in patients with capsulitis of the shoulder. Effect sizes of all outcome measures, quantified as standardized response means, were compared. Relationships between change scores of shoulder function and activities were assessed. Subjects: Ten patients with unilateral capsulitis of the shoulder. Main outcome measures: Muscle strength and active range of motion were measured by isokinetic dynamometry. We then calculated involved/uninvolved ratios of the maximal peak torques of abduction, adduction, external and internal rotation, active range of motion of abduction and external rotation. In addition, pain was scored using the numeric rating scale (NRS-101) and activity level was scored using the Shoulder Disability Questionnaire. Results: The standardized response mean of all outcome parameters was equal to or greater than 0.8, except for active range of motion of abduction. No significant differences between the standardized response means were found. There is a significant correlation between the change scores of NRS-101 and Shoulder Disability Questionnaire. No significant correlations were found between the change scores of NRS-101 and Shoulder Disability Questionnaire on the one hand, and involved/uninvolved ratios of peak torques and active range of motion on the other. Conclusions: Responsiveness of all outcome measures is good. Parameters of isokinetic dynamometry may provide additional information as compared with the usual outcome measures of pain and functional level.

A vocational rehabilitation intervention for young adults with physical disabilities: participants' perception of beneficial attributes

BACKGROUNDnFinding and maintaining employment is a major challenge for young adults with physical disabilities and their work participation rate is lower than that of healthy peers. This paper is about a program that supports work participation amongst young adults with chronic physical disabilities. The study aims to explore their experienced barriers and facilitators for finding and maintaining employment after starting this program, the participant-perceived beneficial attributes of the program and participants recommendations for additional intervention components.nnnMETHODSnSemi-structured interviews (nu2009=u200919) were held with former intervention participations. Interviews were recorded and transcribed ad verbatim. Themes were derived using the phenomenological approach.nnnRESULTSnPhysical functions and capacities, supervisors attitude, self-esteem and self-efficacy and openness and assertiveness were experienced barriers and facilitators for finding and maintaining employment. Improvement of self-promoting skills and disclosure skills through job interview-training, increased self-esteem or self-efficacy through peer-support, a suitable job through job placement, improvement of work ability through arrangement of adjusted work conditions and change of supervisors attitude through education provided to the supervisor were perceived as beneficial attributes of the intervention. Respondents recommended to incorporate assertiveness and openness skills training into future intervention programs.nnnCONCLUSIONSnThe findings suggest that programs supporting work participation should be designed to provide challenging, real-world experiential opportunities that provide young adults with physical disabilities with new insights, self-efficacy and life skills. Also, such programs should facilitate context centered learning. Former intervention participants, therefore, evaluated job-interview training, sharing learning and social experiences with peers, job placement, arrangement of adjusted work conditions and education as beneficial attributes of the At Work program. In addition, they recommended, to incorporate more training on assertiveness and disclosure. We advise professionals to include these beneficial attributes in similar interventions in other contexts.

Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy

OBJECTIVEnTo describe longitudinal change in perceived health, presence of health issues, and functional level in adults with cerebral palsy (CP).nnnDESIGNnProspective cohort study.nnnSETTINGnParticipants daily environment.nnnPARTICIPANTSnAdults (N=49) with CP (age range, 35-45y; 27 [55%] men; 36 [75%] spastic) formerly known in pediatric rehabilitation care participated.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnPostal questionnaires were completed by the adults or their proxies (n=9). Health outcomes included perceived health (adapted from the 36-Item Short Form Health Survey) and presence of health issues such as pain, severe fatigue (dichotomized), and functional level (Barthel Index; walking performance).nnnRESULTSnOver a 10-year period, the percentage of adults with CP worrying about their health increased (29%-54%; P=.008) and those indicating that health problems limit their activities increased (19%-45%; P=.002). In the same period, most adults continued to report good general health (93%-86%; P=.148). Presence of some health issues increased over time, such as pain; severe fatigue was a common health issue at follow-up (32%). Over a 14-year period, mobility and self-care deteriorated (Barthel Index, 17.1±4.8 to 16.3±5.6; P=.007). Walking performance, specifically indoors, declined (83%-71%; P=.010).nnnCONCLUSIONSnAdults with CP experienced deterioration in health outcomes in the long term. Most notably, perceived health and functional level decreased. Pain and severe fatigue were the most common health issues in adult CP. More research is required to explore the mechanisms at work in the process of aging in persons with CP. Systematic follow-up of adults with CP appears necessary to timely detect and intervene in health problems and functional decline.

Relationships among manual body functions, manual capacity, and bimanual performance using the prosthetic upper extremity functional index in children with congenital hand differences

Background Most surgical techniques intervene at the level of body functions of the upper limb, aiming to improve manual capacity and activity performance. However, the nature of the relationships among these levels of functioning and evidence for hand function variables predicting performance have scarcely been investigated. Objective The primary aim of this study was to assess aspects of hand function and manual capacity that influence bimanual performance in children with congenital hand differences (CHDs), ranging from surgically corrected polydactyly or syndactyly to radial dysplasia. A secondary aim was to assess whether the number of items on the Prosthetic Upper Extremity Functional Index (PUFI) can be reduced without losing information on bimanual performance in this population. Design A cross-sectional design was used. Methods One hundred six 10- to 14-year-old children with CHD participated in the study, which was conducted in a university hospitals outpatient clinic. Bimanual performance was evaluated with child self-reports on an adapted version of the PUFI, calculating ease of performance and actual use of the affected hand. Additionally, hand function and manual capacity were assessed. Results The median score on ease of performance was high, and, on average, the children used their affected hand actively in 97% of all activities. Manual capacity of the nondominant hand and lateral pinch strength of the dominant hand predicted attainment of maximum PUFI scores. Nonmaximum PUFI scores were predicted by opposition strength of the nondominant hand and lateral pinch strength of the dominant hand. In addition, in this patient group, only 6 items of the PUFI explained all variance in PUFI scores. Limitations The generalizability of the results is limited by the carefully selected age range. Second, the cross-sectional design of the study limits statements on causality on the relationships found. Conclusion Children with a CHD generally have good bimanual performance and, on average, perform activities with active use of the affected hand. Therapy directed toward increasing manual capacity and finger muscle strength might assist in improving bimanual performance in children with CHD. Furthermore, the number of items on the PUFI could be reduced from 38 to 6 items in children with CHD.

COST-UTILITY OF A LIFESTYLE INTERVENTION IN ADOLESCENTS AND YOUNG ADULTS WITH SPASTIC CEREBRAL PALSY

OBJECTIVEnTo evaluate the cost-utility of a lifestyle intervention among adolescents and young adults with cerebral palsy.nnnDESIGNnSingle-blind, randomized controlled trial.nnnSETTINGnSix university hospital/clinics in the Netherlands.nnnPARTICIPANTSnFifty-seven adolescents and young adults with spastic cerebral palsy classified as Gross Motor Functioning Classification System (GMFCS) level I-IV.nnnINTERVENTIONnA 6-month lifestyle intervention consisting of physical fitness training combined with counselling sessions focusing on physical behaviour and sports participation.nnnMAIN OUTCOME MEASURESnData on quality of life, direct medical costs and productivity costs were collected using standardized questionnaires. Quality adjusted life years (QALYs) were derived from the Short-Form 36 questionnaire using the Short-Form 6D.nnnRESULTSnQuality of life remained stable over time for both groups. No significant differences between groups were found for direct medical costs or productivity costs. A cost-utility ratio of -€23,664 per QALY was found for the lifestyle intervention compared with no treatment.nnnCONCLUSIONnThe results of this study are exploratory, but indicate that implementing a lifestyle intervention for the cerebral palsy population might be cost-effective or cost-saving compared with offering no intervention to improve physical behaviour and fitness. However, the large range of uncertainty for the cost-utility ratio should be taken into account and the results interpreted with caution.