Improving Social Isolation and Loneliness Among Adolescents With Physical Disabilities Through Group-Based Virtual Reality Gaming: Feasibility Pre-Post Trial Study.

BACKGROUND: Adolescents with disabilities experience alarmingly higher rates of depression and isolation than peers without disabilities. There is a need to identify interventions that can improve mental health and isolation among this underserved population. Innovations in virtual reality (VR) gaming "standalone" headsets allow greater access to immersive high-quality digital experiences, due to their relatively low cost. OBJECTIVE: This study had three purposes, which were to (1) examine the preliminary effects of a low-cost, home-based VR multiplayer recreation and socialization on depression, socialization, and loneliness; (2) quantify the acceptability of the program as measured by participant adherence, total play time, and exercise time; and (3) identify and describe behavioral mechanisms that affected participant engagement. METHODS: This was a single-group, pre- to postdesign trial. The intervention was conducted at home. Participants were recruited from a children's hospital. The intervention lasted 4 weeks and included 2×1-hour sessions per week of supervised peer-to-peer gaming. Participants used the Meta Quest 2 headset to meet peers and 2 coaches in a private party held digitally. Aim 1 was evaluated with the Children's Depression Inventory 2 Short Form and the University of California, Los Angeles Loneliness Scale 20 items, which are measures of social isolation and loneliness, respectively. Aim 2 was evaluated through the following metrics: participant adherence, the types of games played, friendship building and playtime, and program satisfaction and enjoyment. RESULTS: In total, 12 people enrolled (mean age 16.6, SD 1.8 years; male: n=9 and female: n=3), and 8 people completed the program. Mean attendance for the 8 participants was 77% (49 sessions of 64 total possible sessions; mean 6, SD 2 sessions). A trend was observed for improved Children's Depression Inventory 2 Short Form scores (mean preintervention score 7.25, SD 4.2; mean postintervention score 5.38, SD 4.1; P=.06; effect size=0.45, 95% CI -0.15 to 3.9), but this was not statistically significant; no difference was observed for University of California, Los Angeles Loneliness Scale 20 items scores. Most participants (7/8, 88%) stated that they became friends with a peer in class; 50% (4/8) reported that they played with other people. Participants reported high levels of enjoyment and satisfaction with how the program was implemented. Qualitative analysis resulted in 4 qualitative themes that explained behavioral mechanisms that determined engagement in the program. CONCLUSIONS: The study findings demonstrated that a brief VR group program could be valuable for potentially improving mental health among adolescents with physical disabilities. Participants built friendships with peers and other players on the web, using low-cost consumer equipment that provided easy access and strong scale-up potential. Study findings identified factors that can be addressed to enhance the program within a larger clinical trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT05259462; https://clinicaltrials.gov/study/NCT05259462. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/42651.

Improving Bowel Management in Children With Spina Bifida.

OBJECTIVES: In individuals with spina bifida (SB), bowel incontinence is associated with lower quality of life and lower likelihood of employment. In an effort to maximize bowel continence in children and adolescents, we created a bowel management assessment and follow-up protocol in a multidisciplinary clinic. Here we report the results of this protocol using quality-improvement methodology. METHODS: Continence was defined as no unplanned bowel movements. Our protocol involved: (1) a standardized 4-item questionnaire about bowel continence and consistency; (2) if the patient was not achieving continence, an intervention starting with oral medication (stimulant and/or osmotic laxatives), and/or suppositories (glycerin or bisacodyl) followed by an escalation to trans-anal irrigation, or continence surgery; and (3) follow-up phone calls at regular intervals to monitor progress and make changes as needed. Results are summarized with descriptive statistics. RESULTS: We screened 178 eligible patients in the SB clinic. Eighty-eight agreed to participate in the bowel management program. Of those who did not participate, the majority (68/90, 76%) were already achieving continence with their bowel regimen. Of children in the program, most (68/88, 77%) had a diagnosis of meningomyelocoele. At 1 year, the proportion of patients who were bowel accident free improved to 46% (vs 22% initially, P = 0.0007). CONCLUSIONS: A standardized bowel management protocol, primarily the use of suppositories and trans-anal irrigation to achieve social continence, as well as frequent telephone follow-up, can reduce bowel incontinence in children and adolescents with SB.

Functional level of lesion scale: Validating fourteen years of research with the national spina bifida patient registry.

PURPOSE: Functional level of lesion (FLOL) is a grading of the level of neurological function in patients with myelomeningocele and other forms of spina bifida. It has been widely used as an independent variable in studies of spina bifida, but its inter-rater reliability has not previously been tested. The purpose of this study was to measure inter-rater reliability of FLOL testing and compare testing performed by a non-medically trained research associate to testing performed by a pediatric rehabilitation medicine specialist. METHODS: Children in a multi-disciplinary spina bifida clinic underwent FLOL grading by a non-medically trained research associate. On the same day, these children were also graded by a pediatric rehabilitation medicine specialist. Cohen's weighted kappa statistic was used to compare grading, with the rehabilitation medicine specialist considered the gold standard. RESULTS: A total of 71 patients participated. FLOL was graded for left and right leg for each participant, resulting in 142 measurements. Cohen's weighted kappa was κ= 0.809, with a standard error of 0.034 and 95% confidence interval 0.723-0.875, indicating substantial agreement. CONCLUSION: FLOL as measured according to the instructions of the National Spina Bifida Patient Registry by a non-medically trained researcher is a reliable method to grade lower extremity function in spina bifida.

Group Telegaming Through Immersive Virtual Reality to Improve Mental Health Among Adolescents With Physical Disabilities: Pre- and Posttrial Protocol.

BACKGROUND: Adolescents with physical disabilities have higher rates of mental health conditions and issues than adolescents without disabilities, and this disparity was exacerbated by the onset of the COVID-19 pandemic. They also have limited access to on-site programs and nearby peers. OBJECTIVE: This pilot aims to investigate the potential effects of a low-dose multiplayer virtual reality telegaming program on depression, socialization, and loneliness among a cohort of children with physical disabilities. A secondary aim is to describe feasibility metrics, namely, recruitment and adherence rates and perceived program enjoyment and satisfaction. The tertiary aim is to describe behavioral mechanisms that affect participant adherence and social participation in the classes. METHODS: This study is a single-group pre- and posttest-designed trial. A single cohort of 12 children with physical disabilities will pilot a 1-month program that includes 2 supervised 1-hour sessions per week of group-based exergaming. Participants will complete questionnaires before and after the program. The primary aim measures will include the Children's Depression Inventory 2 Short Form, a measure of feelings of depression, and the UCLA Loneliness Scale, a measure of both loneliness and social isolation. Secondary aim measures will include three posttest Likert scale questionnaires: perceived program enjoyment, program satisfaction, and satisfaction with multiplayer experiences. At postintervention or dropout, participants will undergo semistructured interviews to identify behavioral mechanisms that underlie participation. Data will be reported descriptively and be supported by t tests as appropriate. RESULTS: Recruitment procedures started in July 2022. All data are expected to be collected by January 2023. Full trial results are expected to be published by March 2023. Secondary analyses of data will be subsequently published. CONCLUSIONS: This trial tests a peer-to-peer virtual reality telegaming program that includes a completely remote enrollment, assessment, and intervention protocol. This program is accessible and short in duration and frequency, allowing it to be integrated into other interventions. Knowledge obtained from this study will inform the development of a larger trial for improving the mental health and well-being of adolescents with physical disabilities. TRIAL REGISTRATION: ClinicalTrials.gov NCT05259462; https://clinicaltrials.gov/ct2/show/NCT05259462. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/42651.

Telehealth Movement-to-Music to Increase Physical Activity Participation Among Adolescents With Cerebral Palsy: Pilot Randomized Controlled Trial.

BACKGROUND: Adolescents 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). OBJECTIVE: The 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. METHODS: This 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. RESULTS: A 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. CONCLUSIONS: This 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 REGISTRATION: ClinicalTrials.gov NCT04264390; https://clinicaltrials.gov/ct2/show/NCT04264390.

The impact of COVID-19 on the lifestyles of adolescents with cerebral palsy in the Southeast United States.

BACKGROUND: The impact of COVID-19 on adolescents with cerebral palsy (CP) and their families is underinvestigated, particularly in the Southeastern United States. OBJECTIVE/HYPOTHESIS: The objective of this study was to examine the impact of COVID-19 on lifestyle activities, general and mental health, and basic needs among a cohort of adolescents with CP in the Southeast U.S. The second purpose was to identify key factors that impacted their lifestyles. METHODS: This was a cross-sectional survey of adolescents with CP (aged 10-19 years) who completed a child-modified version of the Coronavirus Disability Survey. Health and behavior items were associated with the perceived lifestyle impact of COVID-19. RESULTS: A total of 101 respondents completed the survey (mean age: 14 ± 2 years). Respondents reported minimal to no change in general health since the COVID-19 outbreak. Basic needs were met for most families. Nearly all participants (94.1%) reported a mental health concern that resulted from COVID-19: 32.7% felt down or depressed; 47.5% felt little pleasure in doing things; and 64.4% felt isolated. Moreover, 74.3% reported decreased socialization, 51.5% reported reduced exercise participation, and 43.6% reported difficulties in obtaining medical care. Most participants (90.1%) were negatively affected by COVID-19, and key associated factors were reduced interactions with friends and family (p = 0.001), exercise participation (p = 0.016), interest in doing things (p = 0.005), worsened depression (p = 0.015), increased isolation from others (p = 0.02) and at home (p = 0.006), technological communication (p = 0.00), and virus exposure (p = 0.008). CONCLUSIONS: Study findings highlight problem areas that warrant urgent intervention among adolescents with CP located within the Southeast U.S.

Examining the Feasibility of Early Mobilization With Virtual Reality Gaming Using Head-Mounted Display and Adaptive Software With Adolescents in the Pediatric Intensive Care Unit: Case Report.

BACKGROUND: Early rehabilitative mobilization for adolescents is safe and feasible. However, there is a lack of published rehabilitation strategies and treatments that can maximize engagement and outcomes among adolescents in the pediatric intensive care unit (PICU). Virtual reality (VR) gaming using a head-mounted display (HMD) and adaptive software can allow active and nonactive gameplay at the bedside for people with limited arm mobility, making it a potentially inclusive and enjoyable treatment modality for adolescents in the PICU. OBJECTIVE: The purpose of this brief case study is to report on the preliminary feasibility of incorporating adaptive VR gaming using an HMD with 2 adolescents who received early mobility treatment within the PICU. METHODS: This study was a mini-ethnographic investigation of 2 adolescents (a 15-year-old male and a 13-year old male) in the PICU who underwent VR gaming sessions as part of their early mobilization care, using an Oculus Rift HMD and adaptive software (WalkinVR) that promoted full gameplay in bed. The Rift was plugged into a gaming laptop that was set up on a table within the patient's room before each session. The intervention was delivered by an adapted exercise professional and supervised by a physical therapist. Patients had access to a variety of active games (eg, boxing, rhythmic movement to music, and exploratory adventure) and nonactive games (eg, racing and narrative adventure). Gaming sessions were scheduled between usual care, when tolerable and requested by the participant. The interventionist and therapists took audio-recorded and written notes after completing each gaming session. These data were analyzed and presented in a narrative format from the perspective of the research team. RESULTS: Case 1 participated in 4 gaming sessions, with an average of 18 minutes (SD 11) per session. Case 2 participated in 2 sessions, with an average of 35 minutes (SD 7) per session. Both cases were capable of performing active gaming at a moderate level of exercise intensity, as indicated by their heart rate. However, their health and symptoms fluctuated on a daily basis, which prompted the gameplay of adventure or nonactive games. Gameplay appeared to improve participants' affect and alertness and motivate them to be more engaged in early mobilization therapy. Gameplay without the WalkinVR software caused several usability issues. There were no serious adverse events, but both cases experienced symptoms based on their condition. CONCLUSIONS: The findings of this study suggest that VR gaming with HMDs and adaptive software is likely a feasible supplement to usual care for adolescents within the PICU, and these findings warrant further investigation. Recommendations for future studies aimed at incorporating VR gaming during early mobilization are presented herein.

Leisure-time physical activity interventions for children and adults with cerebral palsy: a scoping review.

AIM: To summarize current evidence on the effects and reach of leisure-time physical activity (LTPA) interventions among children and adults with cerebral palsy (CP). METHOD: Systematic searches were conducted in PubMed, CINAHL, and Google Scholar to identify randomized controlled trials (RCTs) of LTPA interventions in CP. Data from eligible studies were extracted for qualitative synthesis. RESULTS: Forty-nine studies enrolled a total of 1513 participants (mean [SD] age 13y [7y], range 5-43y; 818 males, 655 females, 40 not reported) and primarily included ambulatory children. RCTs underrepresented adults and people in Gross Motor Function Classification System (GMFCS) levels IV and V. Forty-one studies reported at least one favorable benefit from LTPA. Benefits included improvements to musculoskeletal strength, cardiorespiratory fitness, quality of life, spasticity, participation, and core aspects of physical function. Regarding reach, only 34% of people that were contacted to participate enrolled within a study. A smaller percentage of participants dropped out from intervention (8%) and follow-up periods (3%). INTERPRETATION: Study findings highlight effective interventions to improve health, fitness, and function. To enhance the reach and generalizability of LTPA trials for CP, future studies should examine how to increase study sample sizes and aim to include a better representation of adults and people in GMFCS levels IV and V. WHAT THIS PAPER ADDS: People with cerebral palsy (CP) may experience improvements in health, fitness, and physical function from leisure-time physical activity (LTPA) interventions. Effective interventions include exercise training, active video games, recreation activities, behavioral coaching, and motor skills training. Interventions that incorporate telehealth technology, behavioral coaching, and community resources may enhance LTPA. Interventions primarily include children in Gross Motor Functional Classification System (GMFCS) levels I to III. Adults, wheelchair users, and those in GMFCS levels IV and V are underrepresented.