Medical and psychological factors related to pain in adults with pediatric-onset spinal cord injury: a biopsychosocial model.

STUDY DESIGN: A cross-sectional study. OBJECTIVES: The aim of this study is to determine medical and psychological correlates of pain in individuals with pediatric-onset spinal cord injury (SCI). SETTING: Shriners Hospitals for Children-Chicago, Philadelphia and Northern California (USA). METHODS: A total of 187 adults who had sustained an injury before 19 years of age completed interviews that included medical information, standardized measures of psychological functioning (Beck Anxiety Inventory and Patient Health Questionnaire) and a comprehensive pain questionnaire to assess the location, frequency, intensity and duration of pain and distress and disability related to pain. RESULTS: The findings identified the medical and psychological correlates of pain. Greater symptoms of depression and anxiety were strong and consistent predictors of several aspects of pain, above and beyond the impact of gender, injury-related characteristics and secondary medical complications. DISCUSSION: The findings support a biopsychosocial model of the development and persistence of pain in individuals with pediatric-onset SCI. Interdisciplinary rehabilitation may incorporate psychological treatment such as cognitive-behavioral therapy to reduce the pain and improve functioning. The assessment and treatment of pain in pediatric-onset SCI is a clinical and research priority. SPONSORSHIP: This study is supported by funding from Shriners Hospitals for Children and the Craig H. Neilsen Foundation, grant #324671.

Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations.

STUDY DESIGN: Mixed methods, using the Modified Delphi Technique and Expert Panel Review. OBJECTIVE: To evaluate the utility and relevance of the International Spinal Cord Injury (SCI) Core and Basic Data Sets for children and youth with SCI. SETTING: International. METHODS: Via 20 electronic surveys, an interprofessional sample of healthcare professionals with pediatric SCI experience participated in an iterative critical review of the International SCI Data Sets, and submitted suggestions for modifications for use with four pediatric age groups. A panel of 5 experts scrutinized the utility of all data sets, correlated any modifications with the developing National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDE) and distributed final recommendations for modifications required to the adult data sets to the International SCI Data Set Committee and the associated Working Groups. RESULTS: Two International SCI Data Sets were considered relevant and appropriate for use with children without any changes. Three were considered not appropriate or applicable for use with children, regardless of age. Recommendations were made for five data sets to enhance their relevance and applicability to children across the age groups, and recommendations for seven data sets were specific to infants and younger children. CONCLUSIONS: The results of this critical review are significant in that substantive recommendations to align the International SCI Core and Basic Data Sets to pediatric practice were made. SPONSORSHIP: This project was funded by the Rick Hansen Institute Grant# 2015-27.

Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.

STUDY DESIGN: In 2014, the adult spinal cord injury (SCI) common data element (CDE) recommendations were made available. This project was a review of the adult SCI CDE for relevance to children and youth with SCI. OBJECTIVES: The objective of this study was to review the National Institute of Neurologic Disorders and Stroke (NINDS) adult SCI CDEs for relevance to children and youth with SCI. SETTING: International. METHODS: The pediatric working group consisted of international members with varied fields of expertise related to pediatric SCI. The group convened biweekly meetings for 6 months in 2015. All of the adult SCI CDEs were reviewed, evaluated and modified/created for four age groups: 0-5 years, 6-12 years, 13-15 years and 16-18 years. Whenever possible, results of published research studies were used to guide recommendations. In the absence of empirical support, grey literature and international content expert consensus were garnered. Existing pediatric NINDS CDEs and new CDEs were developed in areas where adult recommendations were not appropriate. After internal working group review of domain recommendations, these pediatric CDEs were vetted during a public review from November through December 2015. RESULTS: Version 1.0 of the pediatric SCI CDEs was posted in February 2016. CONCLUSION: The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.

Medication profile and polypharmacy in adults with pediatric-onset spinal cord injury.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe the medications taken by individuals who had sustained a spinal cord injury (SCI) in childhood or adolescence (age <19 years) and to report the prevalence of polypharmacy and its association with demographic, injury-related and psychosocial factors. SETTING: Community. METHODS: Structured interviews of adults with pediatric-onset SCI. Routine medications and secondary health conditions (SHCs) experienced were recorded. Polypharmacy was defined as the concomitant use of five or more different types of medications. Bivariate analyses and multiple regression models were conducted to determine associations between polypharmacy and demographic factors, injury-related factors, number of SHCs and psychosocial outcomes (FIM, SF-12v2 Health Survey, CHART, PHQ-9). RESULTS: A total of 159 participants (male, 63%; tetraplegia, 59%) with mean age 35.0±6.2 years (range, 26.7-50.9 years) were included. Most common routine medications were muscle relaxants (50.3%), bladder medications (48.5%), bowel agents (41.5%), analgesics (26.4%) and antidepressants (16.9%). Polypharmacy was present in 30.8% (n, 49) and was more prevalent in those with tetraplegia (40.2% vs 17.9%; P=0.003). Participants with polypharmacy were older, had lower FIM, CHART and SF-12v2 scores, and higher PHQ-9 scores. Regression models indicate the total number of SHCs, time since injury and tetraplegia to be significant positive predictors of polypharmacy. CONCLUSION: Duration of SCI and SHCs are risk factors for polypharmacy in this population of adults with SCI. Measures should be taken to prevent the occurrence of SHCs throughout adulthood so as to prevent the potentially adverse physiological effects and psychosocial outcomes associated with polypharmacy.

Predictive factors of hospitalization in adults with pediatric-onset SCI: a longitudinal analysis.

STUDY DESIGN: Longitudinal survey. OBJECTIVES: To investigate the prevalence and rate of hospitalization among adults with pediatric-onset spinal cord injury (SCI) and explore medical and behavioral factors associated with hospitalization. METHODS: This study included 368 adults who sustained a SCI prior to age 19 and were enrolled in an ongoing longitudinal study investigating the outcomes of pediatric-onset SCI. Participants were interviewed on an approximately annual basis using a study-specific questionnaire and standardized outcome measures: Satisfaction with Life Scale; Short-Form 12 Health Survey; Alcohol Use Disorders Identification Test; Patient Health Questionnaire-9 Depression Scale; and Craig Handicap Assessment and Recording Technique. RESULTS: Overall, 61% of participants self-reported at least one hospitalization across all time points; average length of hospitalization was 14.8 days (±23.3). Individuals who were ethnic minorities as well as those with high cervical-level SCI were more likely to be hospitalized. Those who were unemployed and those with health-care coverage were more likely to be hospitalized and have longer hospitalization stays. The risk of hospitalization was higher with occurrence of pressure ulcers, urinary tract infections, pneumonia, pain and a chronic medical condition. Smoking cigarettes increased the risk of hospitalization, whereas those who engaged in exercise and were active in the community had lower odds of hospitalization. CONCLUSION: Both medical and lifestyle factors have an important role in predicting hospitalization. An increased understanding of the risk and protective factors associated with hospitalization should assist clinicians in developing strategies and prevention efforts to minimize secondary health complications and foster healthy lifestyle behaviors.

Longitudinal employment outcomes in adults with pediatric-onset spinal cord injury.

STUDY DESIGN: Longitudinal survey. OBJECTIVES: To determine in adults with pediatric-onset spinal cord injury (SCI) employment outcomes, longitudinal changes in employment over time and changes in psychosocial outcomes associated with employment status. SETTING: Community setting. METHODS: Adults who had sustained a SCI before 19 years of age and had completed at least three consecutive annual interviews were included in the study. Generalized estimating equation models were formulated to obtain odds ratio (OR) of change in employment status and outcomes over time. RESULTS: Total 1691 interviews were conducted in 283 participants, 182 men and 101 women (88% Caucasian; age at baseline, 27.3±3.7 years; duration at baseline, 12.7±5.0 years). At the last interview (age, 34.4±5.2 years; duration, 19.9±6.1 years), 49.5% were employed and 47.0% had a baccalaureate or post-baccalaureate degree. There was no significant change in employment status over time (OR 1.01, confidence interval (CI) 0.98-1.04). Odds of employment increased over time in participants who were women (1.04, CI 1.00-1.08), married (1.05, CI 1.02-1.08) and attained baccalaureate (1.03, CI 1.00-1.07) or post-baccalaureate (1.05, CI 1.02-1.08) degree. Employment odds decreased with occurrence of autonomic dysreflexia (0.80, CI 0.65-0.99), spasticity (0.80, CI 0.59-0.99) or chronic medical condition (0.83, CI 0.71-0.98). Life satisfaction scores increased over time in those who remained employed (1.11, CI 1.01-1.22); odds of depression increased over time in those who remained unemployed (1.13, CI 1.04-1.23). CONCLUSION: Employment status remained relatively stable in adults with pediatric-onset SCI; however, changes in employment were associated with education, secondary health conditions and psychosocial well-being.

Substance use in young adults with pediatric-onset spinal cord injury.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To assess the prevalence of substance use in young adults with pediatric-onset spinal cord injury (SCI) and its relationship with demographic factors, and medical and psychosocial outcomes. SETTING: Young adults living in the United States who received pediatric SCI care at one of three SCI programs at the Shriners Hospitals for Children. METHODS: Individuals aged 21-25 years who had sustained SCI before the age of 19 were interviewed with a structured questionnaire including standardized outcome measures: FIM, satisfaction with life scale (SWLS), short-form 12 health survey (SF-12), patient health questionnaire-9 (PHQ-9) depression scale, and Craig handicap assessment and recording technique (CHART). RESULTS: Sample included 215 individuals with a mean age at interview of 23.3 (s.d.=0.9) years and mean age at injury of 13.2 (s.d.=4.9) years. In all, 24% had a college degree, 36% were employed and 12% were married. Regular substance use was reported by 28% for tobacco, 55% for alcohol and 11% for marijuana. Tobacco use was associated with depressive symptoms and unemployment; alcohol use was associated with having a college degree, single status and independent mobility; and marijuana use was associated with not having a college degree. There were no significant associations between substance use and injury-related factors or life satisfaction. CONCLUSION: Substance use in young adults with pediatric-onset SCI was associated with factors such as education, employment, marital status and depressive symptoms. Clinicians caring for youth with SCI should counsel patients and caregivers regarding the use of substances and potential associations with outcomes in adulthood.

Spirituality and life satisfaction in adults with pediatric-onset spinal cord injury.

STUDY DESIGN: This study was a cross-sectional, follow-up survey. OBJECTIVES: To examine the role of importance of religion and spiritual coping on life satisfaction in adults with pediatric-onset spinal cord injury (SCI). SETTING: This study was carried out in a specialty hospital system. METHODS: Individuals who sustained an SCI before age 18 completed a structured telephone interview at ages 24-45. Demographic/medical questionnaires along with standardized measures were administered: Brief COPE, FIM, Craig Handicap Assessment and Reporting Technique (CHART), 12-item Short-Form Health Survey (SF-12) and Satisfaction with Life (SWL) scales. Spirituality was measured with a question assessing importance of religion and using the spiritual coping domain of the Brief COPE. RESULTS: A total of 298 individuals (62% men; 56% with tetraplegia) participated in this study. Approximately half (141) of the participants reported that religion is 'important to very important' to them and 55% (163) used spiritual coping. Importance of religion and spiritual coping was significantly associated with older age (P<0.01), longer duration of injury (P<0.01) and higher SWL (P<0.05). Importance of religion was also related to higher SF-12 mental component (P<0.05). Spiritual coping was negatively associated with motor independence (P<0.05) and CHART occupation (P<0.05). Moreover, spiritual coping emerged as a predictor of SWL, whereas importance of religion did not. CONCLUSION: Over half of the participants endorsed importance of religion and the use of spiritual coping. Spiritual coping, in particular, may serve a unique role in promoting SWL. Consequently, assessment of spirituality needs to become a standard part of care in the treatment of individuals with SCI and the use of spirituality-focused interventions to promote SWL should be explored.