Age, sex, and multi-morbidity stratified mortality risk estimates for adults with cerebral palsy to inform clinical decision making.

Background: While research has provided key insights into mortality rates and risks for individuals with cerebral palsy (CP), clinically useable mortality risk estimates remain unreported for adults with CP, especially by key patient-level factors.

Objective: The objective of this study was to generate clinically useable mortality risk estimates among adults with CP to inform clinical decision making.

Methods: This retrospective cohort study, using a fee-for-service Medicare database, identified adults ≥18-years-old with CP from 01/01/2008-12/31/2010 and followed through 12/31/2019 for death.

Transitioning health care for adults with cerebral palsy.

This commentary is on the original article by Manikandan et al. on pages 235–244 of this issue.

Feasibility and reliability of measured glomerular filtration rate with [I125]-iothalamate among young adults with mild-to-moderate cerebral palsy.

Objective: Despite the need, measuring glomerular filtration rate (mGFR) is not routinely performed for adults with cerebral palsy (CP), possibly due to unknown feasibility given the secondary complications of CP. This study aimed to assess the feasibility and reliability of mGFR and explore factors associated with eGFR-mGFR discordance among young adults with mild-to-moderate CP.

Methods: This single-center, cross-sectional study included 18- to 40-year-olds with CP gross motor function classification system (GMFCS) I-III.

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

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.

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.

Comorbidity Clusters Among Adults With Cerebral Palsy: A Latent Class Analysis.

Introduction: Adults with cerebral palsy are at risk for early multimorbidity onset, but little is known about the composition of multimorbidity profiles or how these profiles present across adulthood. The objective of this study was to identify multimorbidity profiles and association with mortality among adults with cerebral palsy.

Methods: This retrospective cohort study used a random 20% fee-for-service Medicare database from January 1, 2008 to December 31, 2019 from adults aged ≥18 years with cerebral palsy.

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.

Perspective: A multi-trait integrative approach to understanding the structural basis of bone fragility for pediatric conditions associated with abnormal bone development.

Bone development is a highly orchestrated process that establishes the structural basis of bone strength during growth and functionality across the lifespan. This developmental process is generally robust in establishing mechanical function, being adaptable to many genetic and environmental factors. However, not all factors can be fully accommodated, leading to abnormal bone development and lower bone strength.

The age-related association between serum creatinine and cardiorespiratory morbidity and mortality and fractures among adults with cerebral palsy.

Purpose: Serum creatinine may be an objective biomarker of salient health issues in adults with cerebral palsy (CP). The objective was to assess the age-related association between serum creatinine with 3-year risk of cardiorespiratory morbidity/mortality and fracture among adults with CP.

Patients And Methods: This retrospective cohort study used medical records between Jan.

Measuring grip strength in adolescents and adults with cerebral palsy in a clinic setting: Feasibility, reliability, and clinical associations.

Aim: To determine the feasibility and reliability of measuring grip strength and its association with anthropometrics and diseases among adolescents and adults (≥16 years old) with cerebral palsy (CP).

Method: In this cross-sectional study, individuals with CP, classified in Gross Motor Function Classification System (GMFCS)/Manual Ability Classification System (MACS) levels I to V, were recruited to measure grip strength, anthropometrics, and self-reported current/history of disease during a routine clinical visit. Feasibility was determined as the proportion recruited/consented/completed testing.

Underlying Causes of Death among Adults with Cerebral Palsy.

Background: Adults with cerebral palsy (CP) represent a growing population whose healthcare needs are poorly understood. The purpose of this study was to examine trends in the underlying causes of death (UCOD) among adults with CP in the United States.

Methods: A national cohort was created from the Centers for Disease Control and Prevention Wide-ranging Online Data for Epidemiologic Research (WONDER) database from 1999 to 2019.

Post-Fracture Inpatient and Outpatient Physical/Occupational Therapy and Its Association with Survival among Adults with Cerebral Palsy.

Physical and/or occupational therapy (PT/OT) may improve post-fracture health and survival among adults with cerebral palsy (CP), but this has not been studied in the inpatient setting. The objective was to quantify the association between acute inpatient and outpatient PT/OT use with 1-year mortality among adults with CP. This was a retrospective cohort study of adults with CP with an incident fragility fracture admitted to an acute care or rehabilitation facility using a random 20% Medicare fee-for-service dataset.

Five-year risk of fracture and subsequent fractures among adults with cerebral palsy.

Background: Epidemiologic evidence documenting the incidence of fracture and subsequent fractures among adults with cerebral palsy (CP) is lacking, which could inform fracture prevention efforts. The objective was to characterize the 5-year rate of initial and subsequent fragility fractures among adults with CP.

Methods: This retrospective cohort study used Medicare claims from 01/01/2008-12/31/2019 from adults ≥18 years old with CP ( = 44,239) and elderly ≥65 years old without CP ( = 2,176,463) as a comparison.

Post-fracture rehabilitation pathways and association with mortality among adults with cerebral palsy.

Objective: Rehabilitation may mitigate the high mortality rates and health declines post-fracture for adults with cerebral palsy, but this is understudied. The objectives were to characterize the post-fracture rehabilitation pathways and identify their association with 1-year survival among adults with cerebral palsy.

Methods: A retrospective cohort study of adults with cerebral palsy with a fragility fracture with continuous health plan enrollment ≥1-year prior to and ≥1 day after their fracture date was performed using a random 20% Medicare fee-for-service dataset.

Opioid prescription patterns among adults with cerebral palsy and spina bifida.

Background: Pain is the most common symptom of cerebral palsy and spina bifida (CP/SB). The objective of this study was to compare the opioid prescription patterns for differing pain types and overlapping pain among adults living with and without CP/SB.

Methods: Privately-insured beneficiaries were included if they had CP/SB (n = 22,647).

Preventive Care for Adults With Cerebral Palsy and Other Neurodevelopmental Disabilities: Are We Missing the Point?

Preventive care techniques are cornerstones of primary care for people with neurodevelopmental disabilities such as cerebral palsy (CP). However, well-established methods evaluating health constructs may not be applied in the same way for adults with CP, as compared to the general population, due to differences in anatomy/physiology, leading to missed opportunities for interventions, medication modifications, and other primary/secondary prevention goals. One barrier to care prevention comes from misinterpretation of values to capture health constructs, even when measurements are accurate.

Excess healthcare spending associated with fractures among adults with cerebral palsy.

Background: Fractures represent a triple threat to adults with cerebral palsy (CP): common, accumulate early in adulthood, and are consequential to health. An economic evaluation of fractures in CP is needed to highlight priorities for allocating resources to clinical and public health programs aimed at preventing fractures and their disease sequela.

Objective: To identify short-term healthcare costs associated with fractures among adults with CP.

A core outcome set for multimorbidity risk in individuals with cerebral palsy.

Aim: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels.

Method: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min-max: 14-68y, 52.

Corrigendum: Shared Physiologic Pathways Among Comorbidities for Adults With Cerebral Palsy.

[This corrects the article DOI: 10.3389/fneur.2021.

Shared Physiologic Pathways Among Comorbidities for Adults With Cerebral Palsy.

Aging with cerebral palsy is accompanied by a declining health and function status across neurological and non-neurological systems. There is a need to understand the shared pathophysiology among comorbidities for adults with cerebral palsy, to inform clinical assessment and guidelines for interventions to improve healthful aging. To begin defining multimorbidity, this study identified the most common comorbidity combinations and their association with mortality among a representative sample of adults with cerebral palsy.

Clinical bone health among adults with cerebral palsy: moving beyond assessing bone mineral density alone.

Aim: To understand associations among bone mineral density (BMD), bone mineral content (BMC), and bone area, and their association with fractures in adults with cerebral palsy (CP).

Method: This retrospective cohort study included 78 adults with CP with a hip dual energy X-ray absorptiometry (DXA) from 1st December 2012 to 3rd May 2021 performed at the University of Michigan. Data-driven logistic regression techniques identified which, if any, DXA-derived bone traits (e.

Navigating the Pathway to Care in Adults With Cerebral Palsy.

As individuals with cerebral palsy (CP) age, they face unique challenges which complicate their ability to access and receive appropriate health care. These problems exist at the level of the health care system, the clinician, and the individual. At the system level, there is an inadequate number of professionals who are informed of and interested in the care of adults with CP.