Annie Pouliot-Laforte, Claire Cherrière, Margaux Hebinck, Jessica Tallet, Catherine Donskoff, Louis-Nicolas Veilleux, Martin Lemay, Maxime T Robert
{"title":"Towards a successful teledance program for youth with cerebral palsy: A mixed-method study with the instructor's perspective.","authors":"Annie Pouliot-Laforte, Claire Cherrière, Margaux Hebinck, Jessica Tallet, Catherine Donskoff, Louis-Nicolas Veilleux, Martin Lemay, Maxime T Robert","doi":"10.1177/18758894251324317","DOIUrl":"10.1177/18758894251324317","url":null,"abstract":"<p><p>PurposeDance is a leisure time physical activity (LTPA) known to improve motor, cognitive, and psychosocial functions in youth with cerebral palsy (CP). Online exercise or tele-programs are promising in overcoming the environmental barriers of accessibility to LTPA. To ensure successful implementation, it is necessary to identify limitations specific to dance in a pediatric population. The aim was to explore the perspectives of the main stakeholders, i.e., dance instructors and youth, to implement such a program.MethodsIn a mixed-method design, feasibility indicators were assessed by participation and retention rates, the Physical Activity Enjoyment Scale (PACES), and the Children's Effort Rating Table (CERT). Semi-structured interviews were conducted before and after the intervention with youth with CP [n = 15] and dance instructors [n = 3]. Interviews were analyzed with an inductive approach.ResultsParticipation and retention rates were 86.7% ± 10.7 and 100%, and the PACES and CERT average scores were 91% ± 11 and 3.7 ± 1.3, respectively. Four themes emerged from the interviews: 1) Technology; 2) Pedagogical Approach; 3) Participant's Environment; and 4) Social Relations.ConclusionThe teledance program is feasible and enjoyable, requiring minimal equipment and travel. However, there is a need to consider and provoke social interaction, to enhance the social and relational dimension of dance.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"120-131"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144015497","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Shreya Singh Beniwal, Neetika Sharma, Mohammed Sulaiman Khan, Krithi Pichiah John, Kopila Gyawali, Daniela Castro Calderón, Prashasti Dahiya, Meenakshi Reddy Yathindra, Muhammad Saeed, Akash Rawat, Muaaz Ather, Ayush Dwivedi
{"title":"Transitioning from pediatric to adult multiple sclerosis care: Challenges, strategies and therapy.","authors":"Shreya Singh Beniwal, Neetika Sharma, Mohammed Sulaiman Khan, Krithi Pichiah John, Kopila Gyawali, Daniela Castro Calderón, Prashasti Dahiya, Meenakshi Reddy Yathindra, Muhammad Saeed, Akash Rawat, Muaaz Ather, Ayush Dwivedi","doi":"10.1177/18758894251329690","DOIUrl":"10.1177/18758894251329690","url":null,"abstract":"<p><p>Multiple sclerosis (MS) is a chronic autoimmune condition causing damage to the protective covering of nerves in the central nervous system. Pediatric multiple sclerosis is a rare form of the disease that affects 3-5% of individuals with multiple sclerosis. Pediatric Onset Multiple Sclerosis (POMS) has a rather different clinical profile from the more prevalent adult multiple sclerosis. Alongside the classic symptoms of multiple sclerosis, children tend to present with various atypical symptoms that can impact motor milestones, speech development, and cognitive functions. This review aims to explore the pathogenesis, clinical features, diagnosis and progression of Pediatric Onset Multiple Sclerosis into adulthood, address the challenges accompanying this transition and identify strategies and therapies to overcome them. Pediatric multiple sclerosis patients transitioning into adulthood face many challenges, such as difficulty in school and social life, and dealing with uncertainties especially due to changes in healthcare providers from pediatric to adult settings. These challenges can be overcome by an emphasis on a well-structured transition plan, early planning, personalized care, proper counselling of the patient as well as the family and caretakers, a multidisciplinary approach with good communication and coordination between all healthcare personnel a robust support network with a gradual transition rather than an abrupt one. Proper care during the transition period is crucial to enhance patient adherence and deepen the understanding of the disease for both patients and their families. This will empower them to seek timely assistance when needed, reduce loss to follow-up, and ultimately improve overall quality of life.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"158-169"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144187206","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Laura M Breij, Eveline B Boeker, Bregje Jaeger, Annemieke I Buizer
{"title":"Gait abnormalities in children with FOXP1 syndrome: A case series.","authors":"Laura M Breij, Eveline B Boeker, Bregje Jaeger, Annemieke I Buizer","doi":"10.1177/18758894251323784","DOIUrl":"10.1177/18758894251323784","url":null,"abstract":"<p><p>FOXP1 syndrome is a neurodevelopmental disorder caused by mutations or deletions in the Forkhead Box Protein 1 (FOXP1) gene. It is characterized by intellectual disabilities, language difficulties, autism spectrum disorder, congenital anomalies and motor impairments.Walking difficulties have been reported, but specific gait impairments have not previously been described. In this case series, specific gait abnormalities, and how they were managed, are reported in three children with FOXP1 syndrome. The most prominent clinical abnormalities in their gait and gait analysis were toe walking with increased plantar flexion, and knee and hip flexion in midstance. All children had premature activation of the calf muscles. In two of the three children, spasticity in the calf muscles and contractures of ankles and knees were found, which could explain these abnormalities in their gait.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"18 2","pages":"155-157"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144302409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gerald D Mayaya, Friedemann Schad, Shiao Li Oei, Walter H Miya, Janet Manoni, Jennifer Mekere, Fabian A Massaga
{"title":"Burden of pediatric neural tube defects at a referral medical center in Tanzania.","authors":"Gerald D Mayaya, Friedemann Schad, Shiao Li Oei, Walter H Miya, Janet Manoni, Jennifer Mekere, Fabian A Massaga","doi":"10.1177/18758894251317839","DOIUrl":"https://doi.org/10.1177/18758894251317839","url":null,"abstract":"<p><p>PurposeThis project aimed to describe the current status and future needs for the management of pediatric neural tube defects (NTDs) at a referral center in Mwanza, Tanzania, and thus can offer a model for other affected areas in sub-Saharan Africa.MethodsA descriptive study design was used to collect and describe data from pediatric patients with NTDs admitted to and treated at Bugando Medical Center in collaboration with Mwanangu Development Tanzania in Mwanza, Tanzania.ResultsBetween January 2018 and August 2022, a total number of 3160 children with NTDs presented to a referral medical center. Thirty-one percent of the patients were from Mwanza, 13% from Geita, 11% from Tabora, 10% from Simiyu, and the rest came from more distant regions of Tanzania. Hydrocephalus and spina bifida were the most common NTD diagnoses recorded that required ventriculoperitoneal shunt interventions in the neurosurgical services.ConclusionEarly neural development disorders are common in sub-Saharan Africa, with spina bifida and hydrocephalus being the most prominent NTDs. The treatment and special education of affected children and adolescents are major public health challenges. As the development of protocols and guidelines for neurosurgical procedures is needed to improve the burden of pediatric hydrocephalus in sub-Saharan Africa, a report on how this is done simply, practically, and effectively here at a referral medical center in Tanzania may benefit countries with similar health issues.This study was approved by the Regional Ethic Review Board in Mwanza Tanzania (Certificate No. CREC/682b/2023).</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"18 2","pages":"132-136"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144302408","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Riekje Neißkenwirth, Christian Mathys, Marc-Phillip Hitz, Tobias Linden, Martin Groß
{"title":"Rehabilitation in a child with Chiari II malformation, lumbosacral meningomyelocele, achondroplasia and impaired respiratory regulation - a case report and literature review.","authors":"Riekje Neißkenwirth, Christian Mathys, Marc-Phillip Hitz, Tobias Linden, Martin Groß","doi":"10.1177/18758894241313094","DOIUrl":"https://doi.org/10.1177/18758894241313094","url":null,"abstract":"<p><p>BackgroundChiari II malformation occurs in one of 1000 live births and causes posterior fossa malformation. In Chiari II malformation, a lumbosacral meningomyelocele is nearly always present. Achondroplasia is the most common cause of dwarfism, occurring in one of 26,000 live births. Both Chiari II malformation and achondroplasia can cause compression at the craniocervical junction and consecutive hydrocephalus.Case presentationThe case of a three-year-old male with Chiari II malformation, lumbosacral meningomyelocele, and achondroplasia is presented. To the authors' knowledge, this is the second such case that has been reported so far. A surgical therapy of a lumbosacral meningomyelocele and an implantation of a ventriculoperitoneal shunt was performed in the first month after birth. At the age of two years, occipitoatlantoaxial stenosis required spinal decompression and laminectomy. The child presented in the outpatient department with life-threatening respiratory dysregulation, comprising prolonged expiratory apnoea with cyanosis (PEAC), acquired central hypoventilation syndrome, central sleep apnoea and obstructive sleep apnoea. He also presented with delayed language development, paraplegia, a neurogenic bladder, and dwarfism. The patient received non-invasive ventilation and had an individually adapted set of assistive and therapeutic devices. Cough insufficiency necessitated the adaption of mechanical insufflation-exsufflation. Speech and language therapy, physiotherapy, and occupational therapy were performed regularly. The patient started attending kindergarten just before his fourth birthday. At his one year follow-up, the patient's language capacities substantially improved and PEAC was not reported anymore.ConclusionWhen osseous, cerebral, and spinal disease are accompanied by life-threatening respiratory impairment, the following factors can reduce the impact of disability and can foster participation: treatment by an interdisciplinary team, the availability of assistive and rehabilitative technologies, living in a barrier-free home, a developmentally appropriate environment, and the continuous presence of trained caregivers.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"18 2","pages":"137-145"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144302410","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Satisfactory long-term functional and radiological outcomes following hip reconstructive surgery in children with cerebral palsy.","authors":"Kathleen Montpetit, Souad Rhalmi, Mathieu Lalumiere, Noémi Dahan-Oliel, Doron Keshet, Dan Epstein, Reggie Hamdy","doi":"10.1177/18758894251316072","DOIUrl":"10.1177/18758894251316072","url":null,"abstract":"<p><p>PurposeThis study aimed to evaluate long-term functional and radiological outcomes as well as parents' perception of change and overall satisfaction following hip reconstructive surgery in children with cerebral palsy (CP).MethodsMedical charts of children between three and 18 years of age with CP who had surgery between 1993 and 2014 by the same surgeon were reviewed. The study sample consisted of 44 children (Gross Motor Function Classification System levels I-V) aged 2-18 years representing 60 hips. Mean follow-up was 8.4 years [1.8-17.5]. A final follow-up evaluation was held to obtain post-operative anteroposterior pelvic radiographs and administer patient-reported outcomes to the caregivers.ResultsCare and Comfort Hypertonicity Questionnaire scores showed that 74-79% of caregivers reported no difficulty post-surgery in terms of child's pain or discomfort during position changes, when participating in general activities, or during sleep. The Lower Extremity Parent-Rated Change Form showed that 58-76% of caregivers reported a better status in their child's overall health, leg function, activity level, and pain post-surgery. Seventy-six percent of the caregivers indicated satisfaction with the overall changes since the surgery. For the 45 hips with both pre-operative and follow-up radiological outcomes, migration percentage improved significantly (p < 0.001) by 36.7%, and there was a 62.2% increase in the number of hips that were located post-operatively compared to pre-operatively. Acetabular coverage improved significantly (p < 0.001) from non-covered to covered in 46.7% of the hips and Shenton's line improved significantly (p < 0.001) from non-intact to intact in 66.7% of the hips.ConclusionHip reconstructive surgery improved long-term functional and radiological outcomes, as well as quality of life for children and caregivers, while changes were perceived as satisfactory to the families. Evaluating pain, function, and satisfaction is important to measure the impact of hip reconstructive surgery on daily life.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"110-119"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143669805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jonathan Castillo, Judy K Thibadeau, Andrea Park, Tim Brei, Heidi Castillo
{"title":"Global burden of chronic non-communicable diseases: Prenatal care and beyond, numerous challenges besiege investigation across the care continuum.","authors":"Jonathan Castillo, Judy K Thibadeau, Andrea Park, Tim Brei, Heidi Castillo","doi":"10.1177/18758894251331737","DOIUrl":"10.1177/18758894251331737","url":null,"abstract":"<p><p>Recently, the National Institutes of Health (NIH) announced possible restructuring of indirect and administrative costs for funded research. Many entities have raised concern about the impacts that such funding restructuring may have on the future progress of biomedical investigation. The NIH has historically played a key role in research on relevant chronic conditions, including spina bifida and cerebral palsy. Such research funds have not only provided occasion for basic science investigational opportunities but also have allowed for enquiry into clinical, social, and environmental factors that impact disability-specific health outcomes, including those present in some of the world's most vulnerable communities. However, the journal's editorial board is nonetheless encouraged to see the growth and change of <i>Journal of Pediatric Rehabilitation Medicine</i> (JPRM), as the journal evolves from a special issue format to a collections format. The collections will serve as ever-growing \"homes\" for the latest research on childhood-onset physical disabilities and complex care needs, with the added benefit of greater accessibility and improved user interface. Furthermore, as reflected in this issue, <i>JPRM</i> will continue to offer a platform for research in multidisciplinary care of childhood disability throughout the lifespan as we weather the changes of time together as a committed global community of clinicians and investigators.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"97-98"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143730537","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Floor van der Klift, Lynn B Orriëns, Bea Spek, Diane Sellers, Corrie E Erasmus, Karen van Hulst
{"title":"Reliability and validity of the Mini-Eating and Drinking Ability Classification System (Mini-EDACS) among Dutch preschoolers with cerebral palsy.","authors":"Floor van der Klift, Lynn B Orriëns, Bea Spek, Diane Sellers, Corrie E Erasmus, Karen van Hulst","doi":"10.1177/18758894251330469","DOIUrl":"10.1177/18758894251330469","url":null,"abstract":"<p><p>PurposeThis study aimed to translate the English version of the Mini-Eating and Drinking Ability Classification System (Mini-EDACS) into Dutch and assess its psychometric properties and applicability among preschool-aged children with cerebral palsy (CP) in the Netherlands.MethodsForty-eight children with CP (18-36 months) were included. Inter-rater reliability of the Dutch version of the Mini-EDACS was assessed between two speech and language therapists (SLTs) and between two SLTs and parents. Construct validity was established by hypothesis testing regarding the expected strength of the correlation between Mini-EDACS level and sum score of (a) the Pediatric Eating Assessment Tool (PEDI-EAT-10) and (b) the Montreal Children's Hospital Feeding Scale (MCH-FS).ResultsThe level of agreement for Mini-EDACS level was almost perfect between SLTs (weighted kappa (k<sub>w</sub>) = 0.83) and substantial between parents and SLTs (parents vs SLT-1: k<sub>w </sub>= 0.77; parents vs SLT-2: k<sub>w </sub>= 0.70).Kendall's tau-b correlation between Mini-EDACS and PEDI-EAT-10 was 0.66 (p < 0.001), slightly lower than hypothesized, and 0.52 (p < 0.001) between Mini-EDACS and MCH-FS, aligning with the hypothesis. Applicability was found to be good.ConclusionThe Dutch version of the Mini-EDACS showed sufficient inter-rater reliability, construct validity and applicability and can be used in clinical care in the Netherlands to promote unambiguous communication between healthcare professionals and parents.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"99-109"},"PeriodicalIF":0.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143764251","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Florian Allonsius, Arend de Kloet, Frederike van Markus-Doornbosch, Ingrid Rentinck, Suzanne Lambregts, Karin Huizing, Peter de Koning, Sandra Te Winkel, Christine Resch, Thea Vliet Vlieland, Menno van der Holst
{"title":"A national consensus-based framework on preferred assessments and interventions in current treatment for young people with acquired brain injury in Dutch rehabilitation centers.","authors":"Florian Allonsius, Arend de Kloet, Frederike van Markus-Doornbosch, Ingrid Rentinck, Suzanne Lambregts, Karin Huizing, Peter de Koning, Sandra Te Winkel, Christine Resch, Thea Vliet Vlieland, Menno van der Holst","doi":"10.1177/18758894251337581","DOIUrl":"https://doi.org/10.1177/18758894251337581","url":null,"abstract":"<p><strong>Purpose: </strong>Acquired brain injury (ABI) is prevalent among young people (4-25 years). When ABI-related problems persist, treatment in a rehabilitation center (RC) may be indicated. However, there is wide variability regarding the delivery of care across Dutch RCs, including assessments, interventions, and psychoeducational (PE) materials. The aim was to create a consensus-based framework with preferred assessments, interventions, and PE-materials to be used in pediatric ABI rehabilitation. A national framework could optimize the delivery of comparable care for this population.</p><p><strong>Methods: </strong>For this three-round Delphi study, healthcare professionals (physiatrists, psychologists, social workers, physical/occupational/speech/language therapists) from RCs providing care for young people with ABI were invited to participate. In the first two (online) rounds, currently used assessments/interventions/PE-materials were collected, stepwise-prioritized, subsequently listed per discipline, and classified per International Classification of Functioning (ICF) domain. Results from rounds one/two were discussed in a consensus meeting (in person), aiming to reach agreement on assessments/interventions/PE-materials in the national framework and how to use them in current practice.</p><p><strong>Results: </strong>Seventy-four healthcare professionals from 12 RCs participated. After Delphi round one, 163 assessments, 39 interventions, and 64 PE-materials were collected. After round two, the selection was narrowed down to n = 51/n = 34/n = 28, respectively. After round three, consensus was reached on 37 assessments, 25 interventions (divided over all disciplines/classified per ICF domain), 27 PE-materials, as well as on the use of the framework by all participating RC to enhance clinical reasoning in current practice.</p><p><strong>Conclusion: </strong>A consensus-based national framework in ABI rehabilitation has been developed and is now available to optimize the delivery of care for young people with ABI across Dutch RCs.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894251337581"},"PeriodicalIF":0.8,"publicationDate":"2025-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144016501","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ellen Fremion, Nora Deibler, Juliana Abel, Monique Ridosh
{"title":"Hospital experiences and medical traumatic stress in adults with spina bifida.","authors":"Ellen Fremion, Nora Deibler, Juliana Abel, Monique Ridosh","doi":"10.1177/18758894251333917","DOIUrl":"https://doi.org/10.1177/18758894251333917","url":null,"abstract":"<p><p>PurposeThis study examined hospital and emergency department (ED) experiences of adults with spina bifida (SB). It investigated the association between medical traumatic stress (MTS) and participant characteristics, anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and resiliency scores.MethodsAdults with SB who had a hospital or ED encounter within the last five years were recruited from a medical home clinic and completed a structured interview and validated questionnaires. Interview responses were characterized using qualitative theme analysis, questionnaires were scored using published guidelines, and MTS scores were reported per participant characteristic and emotional health questionnaire score counts and percentages.ResultsTwenty-five adults with SB were recruited, representing 37% of eligible patients. A majority of participants scored positive for at least one symptom cluster of MTS. No trends were noted within the demographic or SB data when compared to MTS scores. There was a trend of increased MTS symptom clusters associated with increased depression, anxiety, and PTSD, and a trend of decreased MTS symptom clusters associated with increased resilience. The narrative analysis yielded three distinct themes: negative hospital environment (sub-themes: feeling unheard, insufficient communication, care delays, and an uncomfortable adult healthcare environment), SB-related condition concerns and complications (sub-themes: adult providers lacking SB knowledge, multiple hospitalizations, pain, urology concerns, skin/bone infections, shunt/neurosurgery care, anxiety about needed procedures and illness severity, and MTS symptom clusters), and positive supports when in the hospital (sub-themes: self-advocacy, resilience, family support, positive patient/provider communication, and positive care outcome).ConclusionFurther research with a larger study population is necessary to draw significant conclusions about relationships between demographic and SB data, emotional health, and MTS. However, this study identified opportunities for improving healthcare experiences for this patient population, including facilitating communication, inquiring about potentially traumatic medical experiences, and promoting self-advocacy, self-efficacy, resilience, and familial support.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"18758894251333917"},"PeriodicalIF":0.8,"publicationDate":"2025-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143999412","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}