Participation experiences of young people with cerebral palsy in key life situations: A qualitative study.

AIMS: To explore the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations of young adulthood and investigate the impact of a government-funded, disability insurance scheme on participation and health service access. METHOD: We conducted a qualitative descriptive study using semi-structured interviews. Sixteen young people with CP (aged 16-30 years; mean age = 24 years 4 months) participated. Interviews were audio-recorded and transcribed verbatim before thematic analysis. RESULTS: An overarching theme of 'branching out into adulthood' was identified. Participants described early adulthood as a time of change, choice, and challenge. The sub-themes were: (1) making sense of my CP as an adult; (2) people's attitudes towards disability and the impacts on me; (3) roadblocks and workarounds; and (4) participation at the time of the COVID-19 pandemic. Participants reported complex views on the new disability insurance scheme. While access to services and support increased, participants experienced significant difficulty negotiating appropriate funding, resulting in frustration and reduced confidence in the scheme. INTERPRETATION: Young people with CP experience complexity as they participate during young adulthood. Alongside exploring how their identity is intertwined with having CP, they face significant barriers to participation when navigating relationships, accessing services, and being involved in the community.

Health literacy in adolescents and young adults with cerebral palsy: a mixed methods systematic review.

PURPOSE: To identify evidence of health literacy in young people with cerebral palsy (13-38 years), describe current strategies they use to access and build their health knowledge, and explore associations between health literacy and quality of life (QoL). METHODS: Four electronic databases were systematically searched (2001 to June 2023) to identify studies describing components of health literacy in this population. Two reviewers screened for eligibility, then extracted data and assessed methodological quality of included studies. Data were synthesised using a convergent integrated analysis framework and summarised with a narrative synthesis. RESULTS: Eleven studies were included (N = 363). Evidence of health literacy was demonstrated through a range of strategies young people employed to identify their specific information needs, develop health literacy skills, and learn experientially. The preferred method for building health knowledge was obtaining information from trusted sources. Information gaps were identified in topics such as ageing with cerebral palsy, sexuality and navigating intimate relationships. There were minimal data on health literacy and QoL. CONCLUSIONS: Young people with cerebral palsy want tailored and credible health information to increase participation in making informed health-related decisions. Building capacity and development of self-efficacy may assist with the identification of emerging health literacy needs.

Despite health literacy being a key indicator of quality chronic disease self-management for people with disabilities, outcomes are infrequently measured in young people with cerebral palsy.Capacity building, development of identity and self-management skills were identified as important components of health literacy in young people with cerebral palsy.Topic areas of unmet health information include relationship management, sexual health and how to navigate the bodily changes associated with ageing with cerebral palsy.Providing adolescents with cerebral palsy earlier opportunities to build health literacy may facilitate increased autonomy in healthcare decision making during the transition to adulthood.

The feasibility and acceptability of a falls prevention e-learning program for physiotherapists.

OBJECTIVE: To examine the feasibility and acceptability of a falls prevention e-learning program for physiotherapists working with people with osteoarthritis (OA). METHODS: A prospective pre-post quasi-experimental approach was adopted. An e-learning program on falls prevention specific to the OA population was developed and delivered. Feasibility and acceptability data were obtained from recruitment records, MoodleTM activity logs, multiple choice quizzes and customized surveys. RESULTS: Of the 65 physiotherapists and near-graduate physiotherapy students who met the eligibility criteria, 50 (77%) completed the e-learning program. Participants were satisfied and considered the program to be acceptable. The program met their expectations (n = 45; 90%) and was highly relevant to their work (median 8-10 [interquartile range (IQR)] 2; range 0 [not at all relevant] to 10 [extremely relevant]). An overall improvement in knowledge was also observed (mean percentage difference 8%; 95% CI -3.49, -1.27). DISCUSSION: Given a heightened risk of falls among people with OA, ensuring physiotherapists are skilled in falls prevention is important. Our acceptability and outcomes data indicate that a falls prevention e-learning program can be feasibly delivered to physiotherapists working in OA care. Future research should assess subsequent changes in clinical practice to determine whether physiotherapists deliver care reflective of contemporary falls prevention evidence.

The experience of living with restless legs syndrome: A qualitative study.

Restless legs syndrome is a sensorimotor disorder that significantly affects quality of life. This study explored the experience of people living with restless legs syndrome. Focus groups were analysed thematically resulting in five themes. Participants described disempowerment in managing symptoms, difficulty coping and poor understanding of the condition. Participants tried many therapies with little relief and were unable to monitor treatment effects. Concerns with healthcare services were common. Feeling understood provided validation and empowerment. Healthcare providers can help people with restless legs syndrome by improving restless legs syndrome awareness, providing psychosocial support and education, and assisting people to monitor treatment effects.

Pain in children with dyskinetic and mixed dyskinetic/spastic cerebral palsy.

AIM: To evaluate pain prevalence and characteristics in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) cerebral palsy (CP) motor types. METHOD: Seventy-five participants with a diagnosis of CP and confirmed dyskinetic or mixed (dyskinetic/spastic) motor type took part in a multisite cross-sectional study. The primary outcome was carer-reported pain prevalence (preceding 2wks) measured using the Health Utilities Index-3. Secondary outcomes were chronicity, intensity, body locations, quality of life, and activity impact. RESULTS: Mean participant age was 10 years 11 months (SD 4y 2mo, range 5-18y). There were 44 males and 31 females and 37 (49%) had predominant dyskinetic CP. Pain was prevalent in 85% and it was chronic in 77% of participants. Fifty-two per cent experienced moderate-to-high carer-reported pain intensity, which was significantly associated with predominant dyskinetic motor types (p=0.008). Pain occurred at multiple body locations (5 out of 21), with significantly increased numbers of locations at higher Gross Motor Function Classification System levels (p=0.02). Face, jaw, and temple pain was significantly associated with predominant dyskinetic motor types (p=0.005). Poorer carer proxy-reported quality of life was detected in those with chronic pain compared to those without (p=0.03); however, chronic pain did not affect quality of life for self-reporting participants. INTERPRETATION: Pain was highly prevalent in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) motor types, highlighting a population in need of lifespan pain management. WHAT THIS PAPER ADDS: Chronic pain prevalence in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) motor types is high. Pain occurs across multiple body locations in predominant dyskinetic and mixed (dyskinetic/spastic) motor types. Less recognized locations of pain include the face, jaw, and temple for predominant dyskinetic motor types.

The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

BACKGROUND: To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy. METHODS: A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adolescents experiencing chronic pain. RESULTS: Twenty-five children and adolescents took part in the cross-sectional study, 23 of whom experienced chronic pain and 13 of moderate intensity. Pain was often located in multiple bodily regions (6/21), with no trends in quality of life outcomes detected. Eight participated in semi-structured interviews, which identified three key themes including 'lives embedded with dyskinesia', 'real world challenges of chronic pain', and 'still learning strategies to manage their pain and dyskinesia'. CONCLUSIONS: A high proportion of children and adolescents with cerebral palsy and dyskinesia who were able to self-report experienced chronic pain. The physical and emotional impacts of living with chronic pain and dyskinesia existed along a spectrum, from those with lesser to greater extent of their impacts. Children and adolescents may benefit from targeted chronic pain education and management within bio-psychosocial models.

Satisfaction with life, health and well-being: comparison between non-traumatic spinal cord dysfunction, traumatic spinal cord injury and Australian norms.

Study design: Cross-sectional survey. Objectives: The objective of this study is to compare self-reported satisfaction with life, and self-reported health and well-being of people with NTSCD, to that of people with TSCI, and with Australian population. Setting: Victoria, Australia. Methods: Participants completed surveys by post or email. The Satisfaction with Life Scale (SWLS) and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) were used to assess self-reported satisfaction with life, and health and well-being. Descriptive statistics are reported including median and interquartile range (IQR). The Mann-Whitney U-test was used to investigate differences between groups. Results: There were 41 participants: NTSCD (n = 14) and TSCI (n = 27). There were no significant differences in the median scores on the SWLS for NTSCD and TSCI, but both groups scored lower than the Australian non-disabled sample mean. There were significant differences between NTSCD and TSCI for SF-36 domains physical functioning, role limitations physical and vitality (p < 0.05). Median scores for both groups in all eight domains were lower than the means of the comparative Australian sample, except for role limitations emotional. Conclusions: There were more apparent difficulties for people with NTSCD in completing desired functional tasks than those with TSCI. Both groups had lower self-reported satisfaction with life, and lower reported health and well-being in comparison to samples of non-disabled Australians.

Non-pharmacological interventions for restless legs syndrome: a systematic review of randomised controlled trials.

Introduction: Restless legs syndrome (RLS) is a sensorimotor disorder characterised by an uncomfortable urge to move the legs. Management is primarily pharmacological. Effects for non-pharmacological, non-surgical options are published but lack systematic examination. Objectives: To synthesise results of non-pharmacological/non-surgical treatment compared to no-treatment controls or alternative treatment for RLS on any relevant outcome. Methods: Databases and reference lists of reviews were searched for randomised controlled trials (RCTs) comparing non-pharmacological treatment to alternative or no treatment controls for idiopathic RLS. Search results were independently screened for inclusion by two researchers; disagreements regarding eligibility were resolved with discussion. Outcomes were summarised, and pooled where possible in meta-analysis. Results: The search yielded 442 articles. Eleven trials met inclusion criteria. Repetitive transcranial magnetic stimulation, exercise, compression devices, counterstrain manipulation, infrared therapy, and standard acupuncture were significantly more effective for RLS severity than control conditions. Vibration pads, cryotherapy, and transcranial direct current stimulation were ineffective in reducing RLS severity. Vibration pads, cryotherapy, yoga, compression devices, and acupuncture significantly improved some sleep-related outcomes. Conclusions: Few studies were identified and quality of evidence was not high. Some non-pharmacological interventions may be beneficial for reducing RLS severity and enhancing sleep. Implications for Rehabilitation The current management of restless leg syndrome is primarily pharmacological, and medications can have unwanted side effects. Repetitive transcranial magnetic stimulation, exercise, compression devices, counterstrain manipulation, infrared therapy, and standard acupuncture may reduce restless leg syndrome severity. Vibration pads, cryotherapy, yoga, compression devices, and acupuncture may improve some sleep-related outcomes in restless leg syndrome. Non-pharmacological interventions for RLS may cause placebo effects and rehabilitation professionals should control for this possibility in future investigations.

Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review.

AIM: The primary aim of this review is to evaluate the evidence for pain prevalence in children and young adults with cerebral palsy. Secondary aims are to identify pain characteristics and types of pain measurement used in this population. METHOD: Ovid MEDLINE, Embase, CINAHL Plus, and PubMed were searched in October 2016 and updated in November 2017. Two authors independently screened studies according to Preferred Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Pain outcomes were categorized within a biopsychosocial pain framework, with pain prevalence extracted for all recall periods and measurement types. RESULTS: One hundred and six publications from 57 studies met inclusion criteria. Pain prevalence varied widely from 14 per cent to 76 per cent and was higher in females, older age groups, and those classified within Gross Motor Function Classification System level V. Pain was most frequent in the lower limbs, back, and abdomen and associated with reduced quality of life or health status. The influence of pain on psychological functioning, interference, and participation was inconclusive. INTERPRETATION: Variation exists in reported pain prevalence because of sampling bias, inconsistent measurement, varying recall periods, and use of different participant age ranges. WHAT THIS PAPER ADDS: Pain prevalence varies from 14 per cent to 76 per cent in children and young adults with cerebral palsy. Pain is more prevalent in females, older age groups, and children in Gross Motor Function Classification System level V.

Psychometric properties of gross motor assessment tools for children: a systematic review.

OBJECTIVE: Gross motor assessment tools have a critical role in identifying, diagnosing and evaluating motor difficulties in childhood. The objective of this review was to systematically evaluate the psychometric properties and clinical utility of gross motor assessment tools for children aged 2-12 years. METHOD: A systematic search of MEDLINE, Embase, CINAHL and AMED was performed between May and July 2017. Methodological quality was assessed with the COnsensus-based Standards for the selection of health status Measurement INstruments checklist and an outcome measures rating form was used to evaluate reliability, validity and clinical utility of assessment tools. RESULTS: Seven assessment tools from 37 studies/manuals met the inclusion criteria: Bayley Scale of Infant and Toddler Development-III (Bayley-III), Bruininks-Oseretsky Test of Motor Proficiency-2 (BOT-2), Movement Assessment Battery for Children-2 (MABC-2), McCarron Assessment of Neuromuscular Development (MAND), Neurological Sensory Motor Developmental Assessment (NSMDA), Peabody Developmental Motor Scales-2 (PDMS-2) and Test of Gross Motor Development-2 (TGMD-2). Methodological quality varied from poor to excellent. Validity and internal consistency varied from fair to excellent (α=0.5-0.99). The Bayley-III, NSMDA and MABC-2 have evidence of predictive validity. Test-retest reliability is excellent in the BOT-2 (intraclass correlation coefficient (ICC)=0.80-0.99), PDMS-2 (ICC=0.97), MABC-2 (ICC=0.83-0.96) and TGMD-2 (ICC=0.81-0.92). TGMD-2 has the highest inter-rater (ICC=0.88-0.93) and intrarater reliability (ICC=0.92-0.99). CONCLUSIONS: The majority of gross motor assessments for children have good-excellent validity. Test-retest reliability is highest in the BOT-2, MABC-2, PDMS-2 and TGMD-2. The Bayley-III has the best predictive validity at 2 years of age for later motor outcome. None of the assessment tools demonstrate good evaluative validity. Further research on evaluative gross motor assessment tools are urgently needed.

Health-related quality of life of ambulant adults with cerebral palsy and its association with falls and mobility decline: a preliminary cross sectional study.

BACKGROUND: Despite an increasing number of studies examining the profile of falls and mobility decline in adults with cerebral palsy (CP), little is known about its impact on an individual's life quality. The aim of this preliminary study was to assess the wellbeing and health status aspects of health-related quality of life (HRQOL) in ambulant adults with CP and explore the relationship of falls and mobility decline with HRQOL. METHOD: Ambulant adults with CP completed postal surveys which sought demographic data, mobility (Gross Motor Function Classification System; GMFCS-E&R), presence of mobility decline, falls history, and HRQOL (Personal Wellbeing Index (PWI), Short Form-36 Health Survey (SF-36)). RESULTS: Thirty-four community-dwelling ambulant adults with CP with a mean age of 44.2 years (SD; 8.6; range 26-65) participated. Twenty-eight (82%) participants reported mobility decline since reaching adulthood, and a similar proportion of individuals (82%) reported having had more than two falls in the previous year. The health status and wellbeing of this sample of ambulant adults with CP were generally lower compared with the Australian normative population. Mobility decline was found by univariate regression analysis to be associated with mental health status (ß = 0.52; p = 0.002), but not when other predictor variables were included in the multivariate model (ß = 0.27; p = 0.072). In contrast, self-reported history of falls was found to be a significant contributing factor for both physical health status (ß = -0.55; p = 0.002) and personal wellbeing (ß = -0.43; p = 0.006). CONCLUSIONS: This sample of ambulant adults with CP perceived their HRQOL to be poor, with some health status and wellbeing domains below that of population wide comparisons. A majority of these individuals also experienced a fall in the last year and a decline in their mobility since reaching adulthood. While further research is required, this preliminary study has highlighted the potential implications of falls and mobility decline on HRQOL in adults with CP.