Contextual predictors of self-management and independence trajectories in adolescents and young adults with spina bifida.

AIM: To examine socioeconomic, condition-related, and neuropsychological predictors of self-management trajectories in adolescents and young adults with spina bifida. METHOD: In this longitudinal study, participants completed the Adolescent/Young Adult Self-Management and Independence Scale interview. Socioeconomic status (SES), shunt status, lesion level, and executive functioning were assessed. Growth in self-management was estimated using linear mixed-effects models. RESULTS: Participants (n = 99) were aged 18 to 27 years. Approximately half (52.5%) were female and White; 15.2% were Black; and 32.3% Hispanic or Latino. Although none of the predictors were associated with growth in self-management from ages 18 to 27 years (p > 0.05), several factors were associated with the intercept at age 18 years for total self-management. Higher SES at baseline predicted a higher total self-management score at age 18 years (b = 0.03, standard error [SE] = 0.01; p < 0.001). On average, participants at age 18 years with a shunt scored lower than those without a shunt (b = -0.90, SE = 0.32; p = 0.01); those with a thoracic lesion scored lower than those with lower lesion levels (lumbar: b = -1.22, SE = 0.34; sacral: b = -1.20, SE = 0.36; p = 0.001 for both). Better parent-reported and teacher-reported executive functions predicted higher total self-management (metacognitive: b = -0.03, SE = 0.01; behavioral regulation: b = -0.04, SE = 0.01; p < 0.05 for both). INTERPRETATION: On average, all participants improved in self-management over time. Additionally, baseline superiority in self-management for adolescents and young adults without a shunt, less severe lesions, better executive functions, and higher SES persisted over time.

Family engagement in paediatric acute care settings: A realist review.

AIM: To create a programme theory of family engagement in paediatric acute care to explicate the relationships between contexts and mechanisms of family engagement that align with family, direct care providers and healthcare organization outcomes. DESIGN: Realist review and synthesis. DATA SOURCES: PubMed, CINAHL, PsycINFO and Web of Science searches for the 2.5-year period (July 2019-December 2021) following our 2021 scoping review. REVIEW METHODS: Following methods described by Pawson and Rycroft-Malone, we defined the scope of the review, searched for and appraised the evidence, extracted and synthesized study findings and developed a supporting narrative of our results. RESULTS: Of 316 initial citations, 101 were included in our synthesis of the final programme theory. Contexts included family and direct care provider individualism, and the organizational care philosophy and environment. Mechanisms were family presence, family enactment of a role in the child's care, direct care providers facilitating a family role in the child's care, unit/organizational promotion of a family role, relationship building and mutually beneficial partnerships. Outcomes were largely family-focussed, with a paucity of organizational outcomes studied. We identified four context-mechanism-outcome configurations. CONCLUSION: This realist review uncovered underlying contexts and mechanisms between patients, direct care providers and organizations in the family engagement process and key components of a mutually beneficial partnership. Given that successful family engagement requires direct care provider and organizational support, future research should expand beyond family outcomes to include direct care providers, particularly nurses and healthcare organization outcomes. IMPACT: The final programme theory of family engagement in paediatric acute care provides a roadmap for clinicians to develop complex interventions to engage families and evaluate their impact. The components of our final programme theory reflect family engagement concepts that have been evolving for decades. PATIENT OR PUBLIC CONTRIBUTION: The team conducting this review included members from the practice setting (JT & KG). In the future, as we and others use this model in practice, we will seek input for refinement from clinicians, patients and caregivers.

Trajectories of self-management and independence in youth with spina bifida: Family-related predictors of growth.

The purpose of this study was to assess family-related predictors of self-management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family-related stress, and perceived family support were assessed by multiple reporters and multiple methods. Growth in AMIS II total self-management and the AMIS II subscales (Condition and Independent Living) were estimated using linear mixed effect models as a function of family factors, after controlling for socio-demographic, condition-related, and neuropsychological variables that had been found to be significant predictors of self-management in prior studies. Model fit and parsimony were assessed using Akaike's information criterion (AIC). This diverse community sample included 99 respondents aged 18-27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. Observed family cohesion at baseline was associated with all self-management scales at age 18 (all p < 0.05). Growth in self-management was associated with parent-reported number of family stress events. For growth in total self-management, the best model included age, race/ethnicity, family income, shunt status, lesion level, neuropsychological function, observed family cohesion, and an age-by-number of family stress events interaction effect. The study findings suggested that family factors were important predictors of self-management trajectories, even after controlling for socio-demographic, condition-related, and neuropsychological covariates. Risk and protective factors identified in families of youth with SB can inform family-focused interventions for self-management.

Adolescent/Young Adult Self-Management and Independence Self-Report Scale: Preliminary psychometric findings.

PURPOSE: This study examined preliminary psychometrics of the Adolescent/Young Adult Self-Management and Independence Self-Report Scale (AMIS II SR). METHODS: Adolescents and adults (N = 159; 13-38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one-third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. RESULTS: Item-to-total correlations support the AMIS II SR total scale (r = .38-.79) and its two subscales: condition (r = .49-.67) and independent living (r = .49-.85). Internal consistency reliability was high (α = .91-.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self-management as first-order factors and a second-order overall self-management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. CONCLUSIONS: This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self-management and independence.

Trends in the early care of infants with myelomeningocele in the United States 2012-2018.

PURPOSE: The early care of children with spina bifida has changed with the increasing availability of fetal surgery and evidence that fetal repair improves the long-term outcomes of children with myelomeningocele. We sought to determine current trends in the prevalence and early care of children with myelomeningocele using a national administrative database. METHODS: This is a retrospective, cross-sectional cohort study of infants with spina bifida admitted within the first 28 days of life using the 2012-2018 Healthcare Cost and Utilization Project National Inpatient Database. Patients with spina bifida were identified by ICD code and stratified into a cohort with a coded neonatal repair of the defect and those without a coded repair. This database had no identifier specific for fetal surgery, but it is likely that a substantial number of infants without a coded repair had fetal surgery. RESULTS: We identified 5,090 patients with a coded repair and 5,715 without a coded repair. The overall prevalence of spina bifida was 3.94 per 10,000 live births. The percentage of patients without neonatal repair increased during the study period compared to those with repair (p = 0.0002). The cohort without neonatal repair had a higher risk of death (p < 0.001), prematurity (p < 0.001), and low birth weight (p < 0.001). More shunts were placed in patients who underwent neonatal repair (p < 0.001). Patients without neonatal repair were less likely to have public insurance (p = 0.0052) and more likely to reside in zip codes within the highest income quartile (p = 0.0002). CONCLUSIONS: The prevalence of spina bifida from 2012 to 2018 was 3.94 per 10,000 live births, with an increasing number of patients without neonatal repair of the defect, suggesting increased utilization of fetal surgery. Patients without neonatal repair had a higher risk of death, prematurity, and low birth weight but were more likely to have commercial insurance and reside in high-income zip codes.

Trajectories of self-management and independence in youth with spina bifida: Demographic predictors of growth.

AIM: The purpose of this study was to examine the trajectories of condition and independent living self-management in youth with spina bifida (SB). METHODS: A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self-management and its subscales (condition and independent living) were estimated using linear mixed-effect models as a function of respondents' demographics. RESULTS: This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty-seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self-management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self-management depended on sex; only males demonstrated increasing growth ( ß Ì‚ = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self-management when compared with White ( ß Ì‚ diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino ( ß Ì‚ diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. CONCLUSION: This study provides evidence of differences in growth of self-management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self-management behaviours over time in young adults with SB can identify subgroups in need of further study.

Engagement of Families in the Care of Hospitalized Pediatric Patients: A Scoping Review.

This scoping review was conducted to examine the range, nature, and extent of the published family engagement literature specific to the pediatric acute care setting to highlight future research and practice development opportunities. Included studies (N = 247) revealed global relevance. Engagement strategies ranged from more passive such as allowing/encouraging families to be present at the bedside to more active strategies aimed at promoting mutual and reciprocal nurse-patient interactions. Family engagement is distinguished by a mutually beneficial partnership of families with health care team members and care organizations. Future research in the area of family engagement in pediatric nursing should focus on determining the core engaging health professional behaviors and engaged parent outcomes; extending the knowledge base related to mutually beneficial partnerships between families and health care teams; developing effectiveness studies to determine the optimal engaging actions by teams to achieve parent engagement; and measuring the influence of engagement on parent and infant/child outcomes.

Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis.

PURPOSE: The measurement of Quality of life (QOL) in adolescents and especially in adolescents with disabilities is limited, often by an assessment of function rather than perception. This analysis explores QOL in adolescents and young adults (AYA) with and without Spina Bifida (SB) from the perspective of AYA and their parents. DESIGN AND METHODS: A descriptive study using content analysis was conducted as a component of a larger multi-site mixed-method study of secondary conditions and adaptation. Participants responded to a single open-ended question on the meaning of quality of life. RESULTS: Descriptive accounts from 209 families generated the following shared categories: an engaged family, a positive life, the goal of independence, being healthy, essential needs for living, having friends, relying on faith, and romantic relationships. A unique category emerged from parents, doing what AYA wants to do. CONCLUSIONS: Family was the most frequently nominated component of QOL. The centrality of family in QOL is an important finding generally not assessed in measures of QOL or even less in health-related QOL instruments. PRACTICE IMPLICATIONS: Findings illustrate the importance of evaluating overall QOL from the perspective of AYA and their parents.

The Influence of a Developmental Disability on the Child's Weight-Related Behaviors: A Parent's Perspective.

PURPOSE: To examine the parent's perspective on how the child's diagnosis of a developmental disability, the weight-management support of the healthcare provider and parental self-care and role modeling influenced the child's weight-related behavior, (i.e. nutrition, physical and sedentary activity). DESIGN AND METHODS: This qualitative study, guided by Bronfenbrenner's Ecological System's Theory, used a one-on-one semi-structured telephone interview conducted with 15 parents of children 5-16 years of age with spina bifida or Down syndrome. Interviews were professionally transcribed and thematically analyzed. In addition, parents reported height and weight for themselves and their child. RESULTS: Three overarching themes within the context of how the child's diagnosis influenced the child's weight-related behaviors emerged: 1) Developmental Characteristics or Condition-Related Factors captured qualities of the child's condition and interactions with the healthcare system; 2) Social Consequences encompassed the influence of the diagnosis on relationships of the child and family members; and 3) Parenting Influences and Practices captured three types of responses including parent perceptions of the diagnosis, parenting behaviors, and parental self-care behaviors, each influencing the child's weight-related behaviors. CONCLUSIONS: Parents illuminated the social and medical challenges that the family encountered due to the child's diagnosis. These challenges directly and indirectly influenced the child's physical and sedentary activity and nutritional intake. Although challenges were present, the strength and determined attitudes of the families became apparent. PRACTICE IMPLICATIONS: The promotion of self-care and examination and validation of the emotional aspects of parenting a child with a disability may positively influence the child's weight-related behaviors.

Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry.

PURPOSE: Achieving bladder continence in individuals with spina bifida is a lifetime management goal. We investigated bladder continence status through time and factors associated with this status in patients with spina bifida. MATERIALS AND METHODS: We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. RESULTS: This analysis included 5,250 participants with spina bifida in a large, multi-institutional patient registry who accounted for 12,740 annual clinic visit records during the study period. At last followup mean age was 16.6 years, 22.4% of participants had undergone bladder continence surgery, 92.6% used some form of bladder management and 45.8% reported bladder continence. In a multivariable regression model the likelihood of bladder continence was significantly greater in those who were older, were female, were nonHispanic white, had a nonmyelomeningocele diagnosis, had a lower level of lesion, had a higher mobility level and had private insurance. Continence surgery history and current management were also associated with continence independent of all other factors (adjusted OR and 95% CI 1.9, 1.7-2.1 and 3.8, 3.2-4.6, respectively). The association between bladder management and continence was stronger for those with a myelomeningocele diagnosis (adjusted OR 4.6) than with nonmyelomeningocele (adjusted OR 2.8). CONCLUSIONS: In addition to demographic, social and clinical factors, surgical intervention and bladder management are significantly and independently associated with bladder continence status in individuals with spina bifida. The association between bladder management and continence is stronger in those with myelomeningocele.

Negative Consequences of Providing Nursing Care in the Neonatal Intensive Care Unit.

BACKGROUND: Compassion fatigue, secondary traumatic stress, and burnout are negative consequences of providing nursing care among nurses. PURPOSE: This cross-sectional study examined a model of negative consequences of providing nursing care (i.e., compassion fatigue, secondary traumatic stress, and burnout) in the Neonatal Intensive Care Unit. METHODS: Data were collected from 174 registered nurses in the level III and IV NICUs in a Midwestern state. Moderated mediation analysis was conducted. FINDINGS: Self-compassion mediated the relationship between strength of the nurse-infant/family relationship and the negative consequences only when the nurse-physician-collegiality was high. There was no such relationship when the level was low. DISCUSSION: The study findings support the model of a mechanism for the development of negative consequences, involving self-compassion and nurse-physician collegiality. CONCLUSIONS: The findings may be applied to development of interventions to address negative consequences in nurses and help nursing administrators reduce staff nurses' negative consequences.

Development of a Self-Management Theory-Guided Discharge Intervention for Parents of Hospitalized Children.

BACKGROUND: Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge. PROBLEM: No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge. PURPOSE: To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization. METHODS: Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals. CONCLUSIONS: The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method. CLINICAL RELEVANCE: Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.

Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children.

PURPOSE: This study explored the sequential relationships of parent perceptions of the quality of their discharge teaching and nurse and parent perceptions of discharge readiness to post-discharge outcomes (parental post-discharge coping difficulty, readmission and emergency department visits). DESIGN/METHODS: In this secondary analysis of data from a longitudinal pilot study of family self-management discharge preparation, the correlational design used regression modeling with data from a convenience sample of 194 parents from two clinical units at a Midwest pediatric hospital. Data were collected on the day of discharge (Quality of Discharge Teaching Scale; Readiness for Hospital Discharge Scale), at 3weeks post-discharge (Post-Discharge Coping Difficulty Scale), and from electronic records (readmission, ED visits). RESULTS: Parent-reported quality of discharge teaching delivery (the way nurses teach), but not the amount of content, was positively associated with parent perception (B=0.54) and nurse assessment (B=0.16) of discharge readiness. Parent-reported discharge readiness was negatively associated with post-discharge coping difficulty (B=-0.52). Nurse assessment of discharge readiness was negatively associated with readmission; a one point increase in readiness (on a 10 point scale) decreased the likelihood of readmission by 52%. CONCLUSION: There is a sequential effect of quality of discharge teaching delivery on parent discharge readiness, which is associated with parent coping difficulty and child readmission. PRACTICE IMPLICATIONS: Efforts to improve discharge outcomes should include strategies to build nurse teaching skills for high-quality delivery of discharge teaching. In addition, routine nurse assessment of discharge readiness can be used to identify children at risk for readmission and trigger anticipatory interventions.

Testing Components of a Self-Management Theory in Adolescents With Type 1 Diabetes Mellitus.

BACKGROUND: The role of self-management in adolescents with type 1 diabetes mellitus is not well understood. PURPOSE: The purpose of the research was to examine the relationship of key individual and family self-management theory, context, and process variables on proximal (self-management behaviors) and distal (hemoglobin A1c and diabetes-specific health-related quality of life) outcomes in adolescents with type 1 diabetes. METHODS: A correlational, cross-sectional study was conducted to identify factors contributing to outcomes in adolescents with Type 1 diabetes and examine potential relationships between context, process, and outcome variables delineated in individual and family self-management theory. Participants were 103 adolescent-parent dyads (adolescents ages 12-17) with Type 1 diabetes from a Midwest, outpatient, diabetes clinic. The dyads completed a self-report survey including instruments intended to measure context, process, and outcome variables from individual and family self-management theory. RESULTS: Using hierarchical multiple regression, context (depressive symptoms) and process (communication) variables explained 37% of the variance in self-management behaviors. Regimen complexity-the only significant predictor-explained 11% of the variance in hemoglobin A1c. Neither process variables nor self-management behaviors were significant. For the diabetes-specific health-related quality of life outcome, context (regimen complexity and depressive symptoms) explained 26% of the variance at step 1; an additional 9% of the variance was explained when process (self-efficacy and communication) variables were added at step 2; and 52% of the variance was explained when self-management behaviors were added at Step 3. In the final model, three variables were significant predictors: depressive symptoms, self-efficacy, and self-management behaviors. CONCLUSIONS: The individual and family self-management theory can serve as a cogent theory for understanding key concepts, processes, and outcomes essential to self-management in adolescents and families dealing with Type 1 diabetes mellitus.

Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder: An Integrated Review of the Literature.

PROBLEM: Stress in parents of children with autism spectrum disorder (ASD) has been reported to be very high. However, little is known about what risk and protective factors influence parental stress self-management in this population. Accordingly, this manuscript is a synthesis of the risk and protective factors that impact self-management of stress in these parents. The concepts in the individual and family self-management theory context domain were used as a framework to guide data collection and analysis. ELIGIBILITY CRITERIA: Searches were conducted using CINAHL, MedLine and PsychInfo. Studies were included if they addressed context factors in parents of children with ASD and were written in English. SAMPLE: Ninety-eight studies met review criteria. RESULTS: This review highlighted risk factors to parental stress self-management within the context of condition-specific factors, physical and social environment, and individual and family. The most concerning of these findings is that parents struggle accessing a diagnosis and services for their child and are frustrated with health care providers' knowledge of ASD and lack of communication. CONCLUSIONS: The risks parents experience as they care for their child with ASD far outweigh the protective factors for self-management of parental stress. IMPLICATIONS: Nurses who are aware of these issues can make important changes to their practice and have a significant impact on parental stress self-management and the care of children with ASD.

Autism Spectrum Disorder and the Child's Weight-Related Behaviors: A Parents' Perspective.

To explore parent perspectives of how the attributes of their child's autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parent's perception of the healthcare providers (HCP) influence on these weight-related behaviors. DESIGN AND METHOD: We conducted and audio-recorded telephone interviews with parents of children with ASD (n=8) using a structured question guide. Data were transcribed and thematic analysis was conducted. Issues surrounding weight-related behaviors and parental strategies used were reported. RESULTS: Two overarching themes with eight subthemes emerged: (1) Challenges related to features of ASD (subthemes included fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects) and (2) Challenges related to the care of children with ASD (subthemes included lack of individualized care planning, picking your battles and the impact of ASD on family). CONCLUSION: Strategies extracted from the parent narratives promoted both healthy and unhealthy weight-related behaviors. The key finding in this study is that some parents did not follow HCP guidance when they perceived that the HCP did not understand their particular situation. PRACTICE IMPLICATIONS: Implementation of healthy weight-related behaviors can be optimized when providers consider the child's challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths.

Mental Health Issues of Women After Release From Jail and Prison: A Systematic Review.

The aim of this review article is to gain an understanding of the mental health issues of women released from jail or prison. Thirty-six studies were synthesized using the biopsychosocial model. Results indicate that released women's mental health issues include psychiatric diagnoses, psychological trauma, substance use disorders; access to psychological medications and services; and motherhood challenges, support, access to basic needs, and criminalized behaviors. Nurses can promote released women's mental health through pre-release assessment and treatment of mental health issues and ensuring access to post-release resources.  Future research should examine released women's mental health experiences.

The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics.

OBJECTIVE: To use data from the US National Spina Bifida Patient Registry (NSBPR) to describe variations in Contexts of Care, Processes of Care, and Health Outcomes among individuals with spina bifida (SB) receiving care in 10 clinics. STUDY DESIGN: Reported here are baseline cross-sectional data representing the first visit of 2172 participants from 10 specialized, multidisciplinary SB clinics participating in the NSBPR. We used descriptive statistics, the Fisher exact test, χ(2) test, and Wilcoxon rank-sum test to examine the data. RESULTS: The mean age was 10.1 (SD 8.1) years with slightly more female subjects (52.5%). The majority was white (63.4%) and relied upon public insurance (53.5%). One-third had sacral lesions, 44.8% had mid-low lumbar lesions, and 24.9% had high lumbar and thoracic lesions. The most common surgery was ventricular shunt placement (65.7%). The most common bladder-management technique among those with bladder impairment was intermittent catheterization (69.0%). Almost 14% experienced a pressure ulcer in the last year. Of those ages 5 years or older with bowel or bladder impairments, almost 30% were continent of stool; a similar percentage was continent of urine. Most variables were associated with type of SB diagnosis. CONCLUSION: The NSBPR provides a cross section of a predominantly pediatric population of patients followed in specialized SB programs. There were wide variations in the variables studied and major differences in Context of Care, Processes of Care, and Health Outcomes by type of SB. Such wide variation and the differences by type of SB should be considered in future analyses of outcomes.

Factors associated with pressure ulcers in individuals with spina bifida.

OBJECTIVE: To describe factors associated with pressure ulcers in individuals with spina bifida (SB) enrolled in the National Spina Bifida Patient Registry (NSBPR). DESIGN: Unbalanced longitudinal multicenter cohort study. SETTING: Nineteen SB clinics. PARTICIPANTS: Individuals with SB (N=3153) enrolled in 19 clinic sites that participate in the NSBPR. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Pressure ulcer status (yes/no) at the annual visit between 2009 and 2012. RESULTS: Of 3153 total participants, 19% (n=603) reported ulcers at their most recent annual clinic visit. Seven factors-level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex-were significantly associated with the presence of pressure ulcers. Of these factors, level of lesion, urinary incontinence, recent surgery, and male sex were included in the final logistic regression model. The 3 adjusting variables-SB type, SB clinic, and age group-were significant in all analyses (all P<.001). CONCLUSIONS: By adjusting for SB type, SB clinic, and age group, we found that 7 factors-level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex-were associated with pressure ulcers. Identifying key factors associated with the onset of pressure ulcers can be incorporated into clinical practice in ways that prevent and enhance treatment of pressure ulcers in the population with SB.

Transitioning adolescents and young adults with spina bifida to adult healthcare: initial findings from a model program.

PURPOSE: The Spina Bifida Transition Project (SBTP) was developed by partners from pediatric and adult health care settings using existing best practice information in an effort to transition adolescents to adult health care providers. The purpose of this manuscript is to present the results of an initial evaluation of the SBTP from the adolescent/young adult (AYA) and family perspective. DESIGN AND METHODS: Qualitative evaluation data were obtained from telephone interviews with 40 individuals (24 AYA and 16 parents representing 28 families) two-three weeks after initial adult clinic visits using a semi-structured interview guide. FINDINGS: Interview analysis yielded six overall themes: Positive experience, Developing Trust, Unexpected Benefits, Communication, Potential Worries, and Suggestions for Improvement. The study supported both the effectiveness of the SBTP as well as patient desire for earlier initiation of transition activities CONCLUSION AND CLINICAL RELEVANCE: SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.