Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care.

BACKGROUND: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered for new rehabilitation programs, little is known about the priorities of the pediatric-onset SCI population. This study describes and compares health and life (H&L) domain research priorities of youth with pediatric-onset SCI and their parents/caregivers. METHODS: A cross-sectional survey, designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) Collaboration, was performed at six European countries. Dyad data from 202 participants, youth with pediatric-onset SCI (n = 101) and their parents/caregivers (n = 101), were analyzed with the PEPSCI H&L domain surveys. RESULTS: The cohort was composed of 8 to 12-year-olds (30.7%), 13 to 17-year-olds (38.6%), and 18 to 25-year-olds (30.7%). The top three H&L domain research priorities reported by parents/caregivers of 8 to 12-year-olds were "walking/ability to move" (91%), "bladder" function (90%), and "general health/feel" (89%), compared with "physical function" (93%), "general health/feel" (90%), and "walking/ability to move" (89%) rated by parents/caregivers of 13 to 25-year-olds. "Bowel" function (85%), "leg/foot movement" (84%), and "bladder" function (84%) were reported as priorities by 13 to 25-year-olds, whereas "physical function" (84%), "experience at school" (83%), and "general mood" were highlighted by 8 to 12-year-olds. The top 10 priorities preferred by 13 to 25-year-olds when compared with the top 10 priorities reported by their parents/caregivers, included problems related to "bowel" and "pain." CONCLUSIONS: Health domain research priorities were highlighted by 13 to 25-year-olds, compared with their parents/caregivers who equally identified H&L domains. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive research strategy for the pediatric SCI population.

The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review.

CONTEXT: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. OBJECTIVES: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. METHODS: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. RESULTS: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. CONCLUSION: The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.

Experiences of Participants with Spinal Cord Injury at an Active Rehabilitation Camp.

This study explored the physical, social, and psychological benefits of an active rehabilitation (AR) camp as experienced by participants with spinal cord injury (SCI), and perceived fitness and mastery of being physically active six months after the camp. The study used a mixed-method design with pre- (n = 23), post- (n = 23), and follow-up questionnaires (n = 18) and individual interviews (n = 8). Fuzzy qualitative comparative analysis (fsQCA) was used to analyze the quantitative data and qualitative content analysis was used to analyze the qualitative data. Results showed that benefits were mainly experienced in the social and psychological domains. As for the physical domain, younger and more recently injured persons with tetraplegia reported more benefits. Six months after the camp, being in the preparation stage of change and being somewhat physically active were necessary and sufficient conditions for experiencing mastery of physical activity regardless of injury type, but only persons with paraplegia experienced fitness benefits. Qualitative data shed further light on the perceived benefits of the camp. The knowledge gained from this study might help practitioners to tailor interventions to individual needs and researchers to ask questions that take into consideration the complexity of active rehabilitation and changes in physical activity behavior for people with SCI.

Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers.

CONTEXT/OBJECTIVE: No information is available regarding priorities for pediatric-onset spinal cord injury (SCI). This study described the Health and Life (H&L) domain priorities of youth with pediatric-onset SCI and their parents/caregivers living in Spain. DESIGN: A cross-sectional survey. SETTING: Two SCI rehabilitation centers. PARTICIPANTS: Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34). INTERVENTIONS: Not applicable. OUTCOME MEASURES: Median overall priorities calculated on the basis of importance, unhappiness, and research measured with a new survey of pediatric H&L domains and rated using a 5-point Likert Scale. RESULTS: A total of 60 surveys were received providing information on 35 individuals with SCI: 2-7-year-olds (25.7%), 8-12-year-olds (22.9%), 13-17-year-olds (31.4%), and 18-25-year-olds (20.0%). The top three overall H&L priorities reported by parents/caregivers of 2-12-year-olds were "parenthood expectations" (84%), "leg/foot movement" (83%), and "bladder" function (83%), compared to "dressing/undressing" (78%), "walking/ability to move" (77%) and "bladder" function (77%) rated for 13-25-year-olds. "Sit-to-stand" (79%), "leg/foot movement" (78%) and "arm/hand movement" (77%) were reported as priorities by 13-25-year-olds. The 13-25-year-olds highlighted "sit-to-stand" (100%), "eating/drinking" (54%), and "physical function" (94%) as their top unhappiness, importance, and research priorities, respectively. Significant differences between tetraplegia and paraplegia were found in "mobility in the community" (unhappiness item) for 13-25-years-old. CONCLUSION: Health domains were considered the top overall H&L priorities by parents/caregivers of 13-25-year-olds, compared to life domains reported for their 2-12-year-olds. This survey will aid rehabilitation professionals to engage stakeholders to implement a comprehensive SCI management program for the pediatric population.

A Systematic Review of the Scientific Literature for Rehabilitation/Habilitation Among Individuals With Pediatric-Onset Spinal Cord Injury.

Objectives: To conduct a systematic review to examine the scientific literature for rehabilitation/habilitation among individuals with pediatric-onset spinal cord injury (SCI). Methods: A literature search of multiple databases (i.e., PubMed/MEDLINE, CINAHL, EMBASE, PsychINFO) was conducted and was filtered to include studies involving humans, published as full-length articles up to December 2020, and in English. Included studies met the following inclusion criteria: (1) ≥50% of the study sample had experienced a traumatic, acquired, nonprogressive spinal cord injury (SCI) or a nontraumatic, acquired, noncongenital SCI; (2) SCI onset occurred at ≤21 years of age; and (3) sample was assessed for a rehabilitation/habilitation-related topic. Studies were assigned a level of evidence using an adapted Sackett scale modified down to five levels. Data extracted from each study included author(s), year of publication, country of origin, study design, subject characteristics, rehabilitation/habilitation topic area, intervention (if applicable), and outcome measures. Results: One hundred seventy-six studies were included for review (1974-2020) with the majority originating from the United States (81.3%). Most studies were noninterventional observational studies (n = 100; 56.8%) or noninterventional case report studies (n = 5; 2.8%). Sample sizes ranged from 1 to 3172 with a median of 26 (interquartile range [IQR], 116.5). Rehabilitation/habilitation topics were categorized by the International Classification of Functioning, Disability and Health (ICF); most studies evaluated ICF Body Function. There were 69 unique clinical health outcome measures reported. Conclusion: The evidence for rehabilitation/habilitation of pediatric-onset SCI is extremely limited; nearly all studies (98%) are level 4-5 evidence. Future studies across several domains should be conducted with novel approaches to research design to alleviate issues related to sample sizes and heterogeneity.

Health and LifeDomain ResearchPriorities in Children, Adolescents and Young Adults With Pediatric-Onset Spinal Cord Injury: A National Cross-Sectional Survey in England.

Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered in developing research programs, little is known about pediatric-onset SCI priorities. Objectives: To describe the health and life (H&L) domain research priorities of youth with pediatric-onset SCI living in England. Methods: Youth with pediatric-onset SCI (≥6 months) were recruited from five English rehabilitation centers and invited with their parents/caregivers to complete the age-appropriate surveys designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) collaboration. Results: A total of 73 surveys were received (32 from participants with SCI and 41 from their parents/caregivers), providing information on 47 individuals with SCI: 2- to 7-year-olds (29.8%), 8- to 12-year-olds (19.2%), 13- to 17-year-olds (17.0%), and 18 to 25-year-olds (34.0%). The top three research priorities reported by parents/caregivers of 2- to 12-year-old and 13- to 25-year-olds were pain (81%/89%), physical function (91%/83%) and health care access (78%/78%). Eighty-nine percent of 8- to 12-year-olds emphasized schooling, peer relationships, and general mood as their research priorities. The top three research priorities for Health or Life domains reported by 13- to 25-year-olds included spasms (95%), pain (91%), pressure injuries (91%), health care access (83%), physical function (78%), and daily personal needs (74%). Conclusion: Although there should be an emphasis on addressing important life domain issues for 8- to 12-year-olds with SCI, adolescents and young adults mostly prioritized health domain research priorities in addition to health care access. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive SCI research strategy in England for the pediatric population.

Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration.

The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, "young people") with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. "Having fun", "relation to family members", and "physical functioning" were found to be highly important for all young people. "Physical functioning", "prevention of pressure injuries", "general health", and "bowel management" received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples' and caregivers' perspectives should be included in the selection of research topics.

Waiting for lumbar spinal stenosis surgery: suffering and a possibility to discover coping abilities.

OBJECTIVE: The objective of this study was to describe aspects of suffering related to being a person with LSS and how suffering is managed before LSS surgery. METHODS/DESIGN/SETTING: A Swedish county hospital. Interviews with 18 consecutive patients on the waiting list for LSS surgery. The themes that emerged from content analysis were further interpreted using Antonovsky salutogenic model as a sensitizing concept. RESULTS: The suffering from LSS before surgery included the main theme of experiencing an impaired physical and social life and struggling to be believed and taken seriously. This had coping strategies to manage symptoms before surgery: a good physician-patient relationship alleviates the burden of long waiting times; ways to manage pain and disability; ambiguous expectations and hope for recovery, and; ways to handle concerns before surgery). CONCLUSION: Being a person with LSS includes suffering and a possibility to discover coping abilities or having support structures for doing so. Our study emphasizes the importance of a supportive dialogue, where physicians and patients make the suffering from LSS and care before LSS surgery more comprehensible and manageable.

Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI).

PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with ≥20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.

STUDY DESIGN: International multicentre cross-sectional study. OBJECTIVES: To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. SETTING: Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. METHODS: An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. RESULTS: The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. CONCLUSIONS: As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.

Patients' perspective on prostatic artery embolization: A qualitative study.

OBJECTIVES: The aim was to describe the patients' experience of undergoing prostatic artery embolization. METHODS: A retrospective qualitative interview study was undertaken with 15 patients of mean age 73 years who had undergone prostatic artery embolization with a median duration of 210 min at two medium sized hospitals in Sweden. The reasons for conducting prostatic artery embolization were clean intermittent catheterization (n = 4), lower urinary tract symptoms (n = 10) or haematuria (n = 1). Data were collected through individual, semi-structured telephone interviews 1-12 months after treatment and analysed using qualitative content analysis. RESULTS: Four categories with sub-categories were formulated to describe the results: a diverse experience; ability to control the situation; resumption of everyday activities and range of opinions regarding efficacy of outcomes. Overall, the patients described the procedure as painless, easy and interesting and reported that while the procedure can be stressful, a calm atmosphere contributed to achieving a good experience. Limitations on access to reliable information before, during and after the procedure were highlighted as a major issue. Practical ideas for improving patient comfort during the procedure were suggested. Improved communications between treatment staff and patients were also highlighted. Most patients could resume everyday activities, some felt tired and bruising caused unnecessary worry for a few. Regarding functional outcome, some patients described substantial improvement in urine flow while others were satisfied with regaining undisturbed night sleep. Those with less effect were considering transurethral resection of the prostate as a future option. Self-enrolment to the treatment and long median operation time may have influenced the results. CONCLUSIONS: From the patients' perspective, prostatic artery embolization is a well-tolerated method for treating benign prostate hyperplacia.

Translation and validation of two International Spinal Cord Injury (SCI) Data Sets-a modified process.

Study design: A descriptive design was used of a reflective process of problem solving among individuals working together to improve the process of translating. Setting: Sweden. Objectives: The aim of this study was to describe a modified process for translation and validation of the International Spinal Cord Injury (SCI) Quality of Life (QoL) and Activity and Participation (A&P) Basic Data Sets from English into Swedish. Methods: The process of translation followed the Executive Committee for the International SCI Standards and Data Sets (ECSCI) recommendations. The initial translation was performed by translators. Experts in SCI were then assembled to scrutinize the translations and to reach a consensus for defining a final version. Results: The whole process was time consuming. To save time in future translations, the start-up planning is of great importance. To identify appropriate participants with knowledge and interest to be part of the project is crucial. In addition, the consensus meetings, when scrutinizing the translated International SCI Data Sets, should be well prepared and structured. We identified a few steps that could make the process more efficient. Conclusions: By adding a few steps as well as defining the role of a project coordinator, we believe that future translations of the International SCI Data Sets for non-English-speaking countries could be facilitated.

Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set.

Study design: Consensus among international experts. Objectives: The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set. Setting: International expert working group. Methods: The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA. Results: The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools. Conclusion: The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed. Sponsorship: This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.

Study design: International focus groups. Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set. Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved. Results: The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months. Conclusion: The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed. Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

Self-reported health problems and prioritized goals in community-dwelling individuals with spinal cord injury in Sweden.

OBJECTIVE: To explore self-reported health problems and functional goals in community-dwelling individuals with spinal cord injury in Sweden. DESIGN: Cross-sectional descriptive study that used a survey designed by an experienced peer mentor with spinal cord injury. SUBJECTS: Community-dwelling individuals with spinal cord injury from Sweden. METHODS: The survey was distributed online by the community peer-based organization RG Active Rehabilitation. RESULTS: A total of 203 individuals (55% males, 90% acquired spinal cord injury) from all regions in Sweden completed the survey. Of these, 33% reported living with > 2 unbearable physical or psychological problems. While some problems (e.g. problems related to bladder and balance) were consistently ranked to be common across all years since injury and type of spinal cord injury, distribution of some other unbearable problems (e.g. type of pain, excessive weight) varied between subgroups. Years since injury, level of acquired spinal cord injury and sex, but not age-group or type of spinal cord injury, explained some of the variation in the goals. CONCLUSION: The high proportion of reported "unbearable" problems point to the stronger need for systematic, comprehensive, life-long, multi-disciplinary follow-up for people with spinal cord injury. The high rate of goals related to improving strength and fitness across all participants independently of their characteristics highlight the important role of community organizations that offer such lifetime services.

Evolving techniques in text-based medical consultation - Physicians' long-term experiences at an Ask the doctor service.

INTRODUCTION: Both the demands and the options for patients to communicate with health care providers utilizing eHealth solutions are increasing. Some patients, or relatives to patients, want to consult another health care provider than the regular one, merely in text. OBJECTIVE: To improve text-based medical consultation by learning from long-term experiences. MATERIALS AND METHODS: Physicians with comprehensive experience of answering free-text medical inquiries at an official health portal in Sweden were interviewed. The interviews were analyzed using a grounded theory approach. RESULTS: Over time, the interviewed physicians developed strategies on how to formulate the answer to a medical inquiry from a previously unknown inquirer. The answering physicians experienced their primary role as providers of medical information and as mediators between an inquirer and the regular health care provider. Many of the answering physicians experienced a personal development with improved communication skills, also in face-to-face meetings with patients. CONCLUSION: Text-based medical consultation is part of an expanding area in eHealth. The development of strategies, guidelines, ethical considerations as well as educational efforts are needed to optimize the skills of asynchronous text-based health consultation.

Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study.

BACKGROUND/OBJECTIVE: Spinal cord injury (SCI) occurring during adolescence poses additional challenges because of the concurrent age-specific bio-psychosocial development. Full understanding of the psychosocial dimensions of rehabilitation requires exploration of the patient perspective. The objective of this study was to focus on psychosocial factors from the patient perspective in persons who had previously sustained a SCI during early and mid-adolescence (11-15 years of age). METHODS: Twenty-four of the 28 persons who had sustained a SCI in Sweden from 1985 to 1996 participated in the study. Semistructured interviews were made an average of 10 years after injury. Narratives were analyzed qualitatively according to content analysis. RESULTS: Parents and peers were found to have formed a crucial network. Parents frequently acted as advocates in interactions with health care providers, as supporters, and as containers of sorrow, frustration, and anger. Peers acted as promoters of activity and identity development. However, health care providers were perceived as not making sufficient use of this network. CONCLUSIONS: Rehabilitation professionals might be encouraged to increase their knowledge of adolescence medicine to better meet the specific needs and demands of persons in this age group. It is further suggested that parents and peers be considered important partners in the joint rehabilitation effort.