Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions.

NARRATIVE SUMMARY: The formation of a patient-reported outcomes registry to provide information about functional changes and pain among adults with cerebral palsy (CP) was identified as a priority to address the gap in knowledge and practice about aging and CP. The Cerebral Palsy Research Network collaborated with consumers, clinicians, and researchers to create an interactive internet platform, MyCP, to host a Community Registry. MyCP also provides educational programming, access to webinars and community forums, and fitness opportunities. The registry hosts surveys on function and pain for adults with CP, which provide cross-sectional and longitudinal data about these important issues. Surveys include previously validated measures with normative values that have been used with other populations and investigator developed questions. Enrollment in the registry is growing but needs to reflect the population of adults with CP, which limits generalizability. Future initiatives involve strategies to increase consumer engagement and enrollment.

Disparities in Smoking and Heavy Drinking Behaviors by Disability Status and Age of Disability Onset: Secondary Analysis of National Health Interview Survey Data.

OBJECTIVES: People with childhood-onset disabilities are living into adulthood, and the prevalence of smoking and illicit drug use among adults with disabilities is high. We evaluated the relationship between disability status and age of disability onset, current cigarette smoking status, and heavy alcohol drinking. METHODS: We conducted a secondary data analysis of the National Health Interview Survey (NHIS), a US survey on illness and disability. Among 2020 NHIS participants aged 22-80 years (n = 28 225), we compared self-reported prevalence of current cigarette smoking and heavy alcohol drinking among those with and without disabilities and among those with childhood- versus adult-onset disabilities. We used adjusted logistic regression analysis to calculate the adjusted odds ratios (AORs) of current smoking and heavy alcohol drinking based on disability status and age of disability onset. RESULTS: Compared with adults without disabilities, adults with disabilities were significantly more likely to report current smoking (23.5% vs 11.2%; P < .001) and significantly less likely to report heavy alcohol drinking (5.3% vs 7.4%; P = .001). The prevalence of these behaviors did not vary significantly by age of disability onset. In adjusted logistic regression models, adults with disabilities had significantly higher odds of current smoking (AOR = 1.76; 95% CI, 1.53-2.03) and similar odds of heavy alcohol drinking (AOR = 0.82; 95% CI, 0.65-1.04) compared with adults without disabilities. The odds of these health behaviors did not vary significantly by age of disability onset. CONCLUSIONS: Adults with disabilities overall may be at high risk for these unhealthy behaviors, particularly smoking, regardless of age of disability onset. Routine screening and cessation counseling related to smoking and unhealthy alcohol use are important for all people with disabilities.

Experiences of young adults with cerebral palsy in pediatric care transitioning to adult care.

AIM: To increase understanding regarding the experiences and values of young adults with cerebral palsy (CP), and their caregivers, regarding pediatric rehabilitation-related care, including perceived barriers and potential facilitators to transition to adult care. METHOD: This was a qualitative descriptive study that used 20 semi-structured interviews (13 caregivers and seven patient-caregiver dyads). RESULTS: We identified four major themes: (1) the value and security of long-term relationships; (2) feeling 'rudderless' navigating the logistics of transition; (3) differences in pediatric versus adult models of care; and (4) perceived lack of provider expertise and comfort in adult care settings. Young adults with CP who had not yet transitioned to adult rehabilitation care and their caregivers placed high value on provider relationships and expertise, advanced planning, communication, and coordination of care. INTERPRETATION: Identified barriers and potential facilitators to the transition to adult rehabilitation care reflected the uncertainty that accompanies leaving an established healthcare relationship. Challenges related to the logistics of this transition, differences in models of care, and perceived lack of provider comfort and expertise in adult care settings were also noted. Our findings could be used to develop and study patient-centered and family-centered transition processes for individuals with CP to promote age-appropriate and developmentally appropriate lifespan care.

Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Adults with cerebral palsy (CP) have unique healthcare needs and risks, including high risk of functional decline. Understanding functional decline is an area of priority for CP research. OBJECTIVE: Describe factors associated with patient-reported changes in function among adults with CP living in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the CP Research Network (CPRN) Community Registry. RESULTS: Participants included 263 respondents (76% female (n = 200); mean age 42 years (SD 14); 95% White (n = 249); 92% non-Hispanic (n = 241)). Many reported functional changes, most commonly a decline in gross motor function since childhood (n = 158, 60%). Prevalence of gross motor decline varied significantly by Gross Motor Function Classification System (GMFCS) level (p < 0.001), but neither hand function decline (p = 0.196) nor communication decline (p = 0.994) differed by GMFCS. All types of decline increased with increasing age, with statistically significant differences between age groups (p < 0.001 gross motor; p = 0.003 hand function; p = 0.004 communication). Those with spastic CP (n = 178) most commonly reported gross motor functional decline (n = 108/178, 60.7%). However, the prevalence of gross motor decline did not significantly differ between those with spastic CP and those without spastic CP (p = 0.789). CONCLUSIONS: Many adults in the CPRN Community Registry reported functional decline, most commonly in gross motor function. Functional decline across domains increased with age. Further research into risk stratification and preventive and rehabilitative measures is needed to address functional decline across the lifespan.

Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Chronic pain is common among adults with cerebral palsy (CP) and an area of priority for research and treatment. OBJECTIVE: Describe the pain experience and its functional and quality of life impact among adults with CP with chronic pain in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the Cerebral Palsy Research Network Community Registry. RESULTS: Among all participants in the Community Registry, n = 205 reported having chronic pain, and 73 % of those (n = 149) completed the Chronic Pain Survey Bundle (75 % female; mean age 43 years (SD 14 years); 94 % White; 91 % non-Hispanic). Back and weight-bearing joints of lower extremities were most frequently reported as painful. There were no differences in average pain severity scores between varying GMFCS levels (H = 6.25, p = 0.18) and age groups (H = 3.20, p = 0.36). Several nonpharmacologic interventions were most frequently reported as beneficial. Participants with moderate to severe average pain scores (5-10) had higher levels of pain interference (p < 0.01) and depression (p < 0.01), and lower levels of satisfaction with social roles (p < 0.01) and lower extremity function (p < 0.01). Pain interference was significantly positively correlated with depression, and negatively correlated with upper and lower extremity function and satisfaction with social roles. CONCLUSIONS: Chronic pain is experienced by adults with CP of varying ages and functional levels and is associated with several adverse quality of life and functional outcomes. Improved understanding of chronic pain in this population will facilitate the development and study of treatment interventions optimizing health, function, participation, and quality of life.

Developmental Outcomes Following Abusive Head Trauma in Infancy: A Systematic Review.

OBJECTIVE: A systematic review of the literature was conducted to identify measures used to evaluate developmental outcomes after abusive head trauma (AHT), as well as describe outcomes among those with AHT, and explore factors and interventions influencing such outcomes. DESIGN: This systematic review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines. The protocol is in PROSPERO, registration number CRD42020179592. On April 17, 2020, OVID Medline, Embase, OVID PsycINFO, Web of Science, CINAHL, Cochrane Library, and Google Scholar were searched (since inception). Inclusion criteria included original, peer-reviewed study data; AHT exposure; infants younger than 24 months at time of AHT; and evaluation of developmental outcomes. Reviewers independently evaluated studies for inclusion and assessed risk of bias using the Effective Public Health Practice Project quality assessment tool for quantitative studies. A descriptive synthesis approach was utilized as variability of study designs, follow-up periods, and outcome assessment tools precluded a meta-analytic approach. RESULTS: Fifty-nine studies were included; 115 assessment tools were used to evaluate developmental outcomes; and 42 studies examined factors influencing outcomes. Two studies evaluated interventions. Five percent of studies ( n = 3) were rated low risk of bias. CONCLUSIONS: Notable variation was observed in terms of case ascertainment criteria. Developmental outcomes after AHT have been assessed in a manner that limits understanding of how AHT impacts development, as well as the efficacy of interventions intended to improve outcomes. Researchers and clinicians are encouraged to adopt consistent diagnostic and assessment approaches.