Dataset Information

Assessing Participation in Adolescents With Cerebral Palsy: Comparison of Life-Habits and USER-Participation.

ABSTRACT: To explore and compare the contents and scores of the Assessment of Life Habits (Life-H) with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in adolescents with cerebral palsy. Youth versions of both instruments were used for (1) content comparison and (2) analyses of relations between both instruments, based on cross-sectional data. Clinic. Participants were adolescents with cerebral palsy, aged 12-18 years; Gross Motor Function Classification System I-V; N=45. Not applicable. Assessment of Life Habits (Life-H) with USER-Participation. Both instruments measure independence in participation, called accomplishment (Life-H) and restrictions (USER-Participation), and satisfaction with participation. Life-H provides a profile of 6 domain scores and the USER-Participation a total score per dimension. Compared with the USER-Participation, the Life-H contains more specific items, more items not-applicable to many participants and more ceiling effects. Total scores on the accomplishment/restrictions and satisfaction scales between both instruments showed strong correlation coefficients (0.87 and 0.67, respectively). Correlations between domain scores were stronger within the accomplishment/restrictions scales (range 0.37-0.88) compared with the satisfaction scales (range 0.22-0.68). Compared with the USER-Participation, the Life-H takes more effort to complete but provides a more comprehensive assessment of participation. Participation accomplishment/restrictions scores were more similar between the instruments compared with satisfaction scores. Researchers and clinicians should carefully compare participation instruments in selecting one that matches their purpose.

SUBMITTER: van Alphen GJ

PROVIDER: S-EPMC9761302 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Assessing Participation in Adolescents With Cerebral Palsy: Comparison of Life-Habits and USER-Participation.

van Alphen Gerjanne J GJ Ketelaar Marjolijn M Voorman Jeanine M JM Scholten Eline W M EWM Post Marcel W M MWM

Archives of rehabilitation research and clinical translation 20221025 4

<h4>Objective</h4>To explore and compare the contents and scores of the Assessment of Life Habits (Life-H) with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in adolescents with cerebral palsy.<h4>Design</h4>Youth versions of both instruments were used for (1) content comparison and (2) analyses of relations between both instruments, based on cross-sectional data.<h4>Setting</h4>Clinic.<h4>Participants</h4>Participants were adolescents with cerebral palsy, ...[more]

PMID: 36545524

Similar Datasets

Project description:ObjectiveTo examine the relation between walking performance and participation in mobility-related habits of daily life in children with cerebral palsy (CP). To date, walking outcomes in CP have been capacity-based (what a child does in structured setting). Physical activity performance (what a child really does in daily life) has been documented to affect the relation of capacity-based gross motor measures and participation.DesignCross-sectional prospective cohort study.SettingRegional pediatric specialty care centers.ParticipantsA cohort of ambulatory children with CP (N=128; age, 2 to 9y; 41% girls; 49% having hemiplegia) participated.InterventionsNot applicable.Main outcome measuresWalking performance was quantified from a 5-day sample of accelerometry data. Stride activity was summarized through the outcomes of the average number of total strides per day (independent of intensity) and the average number of total strides per day at >30 strides/min (marker of intensity). Mobility-based participation was assessed by using the Assessment of Life Habits for Children questionnaire categories of personal care, housing, mobility, and recreation. Regression models were developed controlling for sex, age, cognition, communication, pain, and body composition.ResultsThe average number of total strides per day was positively associated with the personal care, housing, mobility, and recreation Assessment of Life Habits for Children questionnaire categories (β=.34-.41, P<.001). The average number of total strides per day at >30 strides/min was associated with all categories (β=.54-.60, P<.001).ConclusionsAccelerometry-based walking activity performance is significantly associated with levels of participation in mobility-based life habits for ambulatory children with CP. Evaluation of other factors and the direction of the relation within the International Classification of Functioning, Disability and Health is warranted to inform rehabilitation strategies.

Project description:The purpose of this pilot study was to compare walking speed, an important component of gait, in the laboratory and daily life, in young individuals with cerebral palsy (CP) and with typical development (TD), and to quantify to what extent gait observed in clinical settings compares to gait in real life. Fifteen children, adolescents and young adults with CP (6 GMFCS I, 2 GMFCS II, and 7 GMFCS III) and 14 with TD were included. They wore 4 synchronized inertial sensors on their shanks and thighs while walking at their spontaneous self-selected speed in the laboratory, and then during 2 week-days and 1 weekend day in their daily environment. Walking speed was computed from shank angular velocity signals using a validated algorithm. The median of the speed distributions in the laboratory and daily life were compared at the group and individual levels using Wilcoxon tests and Spearman's correlation coefficients. The corresponding percentile of daily life speed equivalent to the speed in the laboratory was computed and observed at the group level. Daily-life walking speed was significantly lower compared to the laboratory for the CP group (0.91 [0.58-1.23] m/s vs 1.07 [0.73-1.28] m/s, p = 0.015), but not for TD (1.29 [1.24-1.40] m/s vs 1.29 [1.20-1.40] m/s, p = 0.715). Median speeds correlated highly in CP (p < 0.001, rho = 0.89), but not in TD. In children with CP, 60% of the daily life walking activity was at a slower speed than in-laboratory (corresponding percentile = 60). On the contrary, almost 60% of the daily life activity of TD was at a faster speed than in-laboratory (corresponding percentile = 42.5). Nevertheless, highly heterogeneous behaviors were observed within both populations and within subgroups of GMFCS level. At the group level, children with CP tend to under-perform during natural walking as compared to walking in a clinical environment. The heterogeneous behaviors at the individual level indicate that real-life gait performance cannot be directly inferred from in-laboratory capacity. This emphasizes the importance of completing clinical gait analysis with data from daily life, to better understand the overall function of children with CP.

Project description:BackgroundAdolescents with cerebral palsy (CP) who have mobility limitations have almost no access to inexpensive and enjoyable home-based programs that can be disseminated on a large scale to help them independently manage their health through participation in leisure-time physical activity (LTPA).ObjectiveThe primary aim of this study was to determine the preliminary efficacy of the early adoption phase of an adult Movement-to-Music (M2M) program with behavioral telecoaching for increasing LTPA and activity participation compared with a waitlist control group in adolescents with CP. The secondary aim was to explore the effects of the program on perceived levels of pain and fatigue. The tertiary aim was to qualitatively evaluate the factors that influenced adherence and develop a theory that would inform the development of a more targeted M2M telehealth program for this group.MethodsThis randomized controlled trial piloted a 4-week M2M program with weekly behavioral telecoaching among 58 adolescents with CP who walked or used wheelchairs. The participants were randomized into one of 2 groups: M2M or control, which maintained their daily activities. M2M included videos that participants were asked to complete 3 times each week at home (asynchronous training). Adherence to video minutes was objectively measured using cloud-based analytics. Changes in activity and LTPA participation were measured before and after the intervention using the Children's Assessment of Participation and Enjoyment total domain scores and active physical recreation domain scores, respectively. Perceived pain and fatigue were measured using the National Institutes of Health Neuro-QoL short forms. The changes in scores were compared between the groups using analysis of covariance. A grounded theory approach was used to analyze one-on-one interviews, coaching notes, and feedback surveys.ResultsA total of 58 people were enrolled, of which 49 (84%) completed the primary outcome follow-up assessment. The mean adherence to the prescribed exercise video minutes across all 4 weeks was 68%, starting from 90% in week 1 and gradually declining to 43% in week 4. Mean adherence to coaching calls was 91%. Analysis of covariance revealed a statistically significant difference between the pre- to postchange scores for Children's Assessment of Participation and Enjoyment Active Physical Recreation-Intensity domain scores in favor of the intervention group (F1,47=8.76; P=.005; effect size=0.17, also known as volume of LTPA). The qualitative findings highlighted 5 critical factors that influenced participants' adherence to the program: caregiver support, video elements, suitable exercises, music, and behavioral coaching.ConclusionsThis project determined that adolescents with CP responded well to an M2M telehealth program that could enhance their LTPA levels. This paper describes a theory in which adherence to a telehealth LTPA program can be optimized through functional and age-specific modifications for adolescents with CP.Trial registrationClinicalTrials.gov NCT04264390; https://clinicaltrials.gov/ct2/show/NCT04264390.

Project description:AimTo assess the health-related quality of life (HRQoL) and mental health of adolescents with cerebral palsy (CP) in rural Bangladesh.MethodsCase-control study of adolescents with CP (10 to ≤18-years) and age and sex matched controls without disability. Primary caregivers were included for proxy report. HRQoL was measured with Bengali versions CP Quality of Life-Teens (CPQoL-Teens) and KIDSCREEN-27. Mental health was measured with Strengths and Difficulties Questionnaire (SDQ).Results154 cases and 173 controls matched on age and sex participated (mean age 15.1 (1.6) and 14.9 (1.6) respectively; female n = 48, n = 55 respectively, p>0.05). CPQoL-Teens was administered to adolescents with CP only; mean outcomes ranged from 38.5 (27.4) to 71.5 (16.1) and 'feelings about functioning' was poorest domain for both self- and proxy-report groups. KIDSCREEN-27 was administered to adolescents with CP and controls; adolescents with CP mean outcomes ranged from 25.9 (12.2) to 48.7 (10.56) and were significantly poorer than controls, mean difference 4.3 (95% CI 0.7 to 7.8) to 16.7 (95% CI 14.5 to 18.5), p<0.05. 'Peers and social support' was poorest domain for all groups. In regards to mental health, adolescents with CP reported significantly poorer mean SDQ than peers without disability, mean difference 0.7 (95% CI 0.3 to 1.1) to 7.8 (95% CI 6.7 to 8.9), p<0.05; and were for self-report 7.8 (95% CI 2.6 to 23.0) and proxy-report 12.0 (95% CI 6.9 to 20.9) times more likely to report 'probable' range 'total difficulties' score. Individual item analysis of CPQoL-Teens and KIDSCREEN-27 identified unique areas of concern for adolescents with CP related to pain, friendships, physical activity and energy, what may happen later in life, and feelings about having CP. Financial resources were of concern for both cases and controls.InterpretationAdolescents with CP in rural Bangladesh are at high risk of poor HRQoL and mental health problems. Effort to reduce the disparity between adolescents with CP and those without disability should consider wellbeing holistically and target dimensions including physical, psychological and social wellbeing. Specific interventions to alleviate modifiable aspects of HRQoL including pain, social isolation, and physical in-activity are recommended.

Project description:BackgroundChildren with cerebral palsy who can self-report have similar quality of life (QoL) to their able-bodied peers. Is this similarity also found in adolescence? We examined how self-reported QoL of adolescents with cerebral palsy varies with impairment and compares with the general population, and how factors in childhood predict adolescent QoL.MethodsWe report QoL outcomes in a longitudinal follow-up and cross-sectional analysis of individuals included in the SPARCLE1 (childhood) and SPARCLE2 (adolescent) studies. In 2004 (SPARCLE1), a cohort of 818 children aged 8-12 years were randomly selected from population-based cerebral palsy registers in nine European regions. We gathered data from 500 participants about QoL with KIDSCREEN (ten domains); frequency of pain; child psychological problems (Strengths and Difficulties Questionnaire); and parenting stress (Parenting Stress Index). At follow-up in 2009 (SPARCLE2), 355 (71%) adolescents aged 13-17 years remained in the study and self-reported QoL (longitudinal sample). 76 additional adolescents self-reported QoL in 2009, providing data for 431 adolescents in the cross-sectional sample. Researchers gathered data at home visits. We compared QoL against matched controls in the general population. We used multivariable regression to relate QoL of adolescents with cerebral palsy to impairments (cross-sectional analysis) and to childhood QoL, pain, psychological problems, and parenting stress (longitudinal analysis).FindingsSeverity of impairment was significantly associated (p<0·01) with reduced adolescent QoL on only three domains (Moods and emotions, Autonomy, and Social support and peers); average differences in QoL between the least and most able groups were generally less than 0·5 SD. Adolescents with cerebral palsy had significantly lower QoL than did those in the general population in only one domain (Social support and peers; mean difference -2·7 [0·25 SD], 95% CI -4·3 to -1·4). Pain in childhood or adolescence was strongly associated with low adolescent QoL on eight domains. Childhood QoL was a consistent predictor of adolescent QoL. Child psychological problems and parenting stress in childhood or their worsening between childhood and adolescence predicted only small reductions in adolescent QoL.InterpretationIndividual and societal attitudes should be affected by the similarity of the QoL of adolescents with and without cerebral palsy. Adolescents with cerebral palsy need particular help to maintain and develop peer relationships. Interventions in childhood to alleviate psychological difficulties, parenting stress, and especially pain, are justified for their intrinsic value and for their longer term effect on adolescent QoL.FundingSPARCLE1 was funded by the European Union Research Framework 5 Program (grant number QLG5-CT-2002-00636), the German Ministry of Health GRR-58640-2/14, and the German Foundation for the Disabled Child. SPARCLE2 was funded by: Wellcome Trust WT086315 A1A (UK and Ireland); Medical Faculty of the University of Lübeck E40-2009 and E26-2010 (Germany); CNSA, INSERM, MiRe-DREES, and IRESP (France); Ludvig and Sara Elsass Foundation, The Spastics Society and Vanforefonden (Denmark); Cooperativa Sociale "Gli Anni in Tasca" and Fondazione Carivit, Viterbo (Italy); Göteborg University-Riksforbundet for Rorelsehindrade Barn och Ungdomar and the Folke Bernadotte Foundation (Sweden).

Dataset Information

Assessing Participation in Adolescents With Cerebral Palsy: Comparison of Life-Habits and USER-Participation.

Publications

Assessing Participation in Adolescents With Cerebral Palsy: Comparison of Life-Habits and USER-Participation.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets