Timecourse of Morbidity Onset Among Adults Living With Cerebral Palsy

Whitney, Daniel G.; Schmidt, Mary; Haapala, Heidi; Ryan, Dayna; Hurvitz, Edward A.; Peterson, Mark D.

doi:10.1016/j.amepre.2021.01.020

Cited by 25 publications

(32 citation statements)

References 29 publications

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“…hypertension and diabetes). 11 Previously, research and health care for CP primarily focused on children and young people; however, in the past decades, attention has broadened towards a lifespan perspective on the impact of CP. 12 Adults with CP present with a broad spectrum of functioning aspects and disability involving body functions, activities, and participation.…”

Section: Discussionmentioning

confidence: 99%

ICF Core Sets for the assessment of functioning of adults with cerebral palsy

Noten

Selb

Troenosemito

et al. 2021

Develop Med Child Neuro

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To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP).METHOD An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. RESULTSThe consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies.

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Section: Discussionmentioning

confidence: 99%

ICF Core Sets for the assessment of functioning of adults with cerebral palsy

Noten

Selb

Troenosemito

et al. 2021

Develop Med Child Neuro

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“…Medical conditions can be identified by specific International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes that are attached to claims. A description of data ascertainment of this cohort, variables, and the ICD-10-CM codes used to identify each medical condition, as well as a flow chart of inclusion/exclusion criteria for this cohort have been reported previously (19,24,25). Data are de-identified and the University Institutional Review Board approved this study as non-regulated.…”

Section: Methods Data Sourcementioning

confidence: 99%

“…A grand challenge in developing clinical care pathways for adults with CP is understanding the appropriate timing for treatment and prioritization, due to the complexity of sorting through the array of diseases that pre-maturely afflict adults with CP (19). It is therefore unknown if treating and managing kidney disease should be prioritized over other health problems, which is in part complicated by clinical assessment of kidney function.…”

Section: Introductionmentioning

confidence: 99%

The Association Between Kidney Disease and Mortality Among Adults With Cerebral Palsy—A Cohort Study: It Is Time to Start Talking About Kidney Health

Whitney

Oliverio

2021

Front. Neurol.

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Objective: Recent evidence shows that adults with cerebral palsy (CP) have an increased risk for kidney disease, but nothing is known about how kidney disease integrates with their overall health. To begin understanding the importance of kidney health, the objective was to determine if kidney disease is associated with mortality among adults with CP after accounting for comorbidities common to CP and kidney disease.Methods: Data from 2016 to 2018 from adults ≥18 years with CP were used from a random 20% sample fee-for-service Medicare database. Kidney disease in 2016 was ascertained as chronic kidney disease (CKD) stages 1–4, end stage kidney disease (ESKD), nephritic and nephrotic syndrome, and renal osteodystrophy. A modified version of the Whitney Comorbidity Index (modWCI) was used, which includes 24 comorbidities relevant to CP and kidney disease. Mortality rate ratio (MRR) through the year 2018 was estimated for each kidney disease and Cox regression estimated the hazard ratio (HR) of mortality after adjusting for demographics, co-occurring neurological conditions, and the modWCI.Results: Prevalence of kidney disease was 7.3% among 16,728 adults with CP. MRR was elevated for any kidney disease (MRR = 3.14; 95%CI = 2.76–3.58) and most subtypes (MRR = 2.21–3.56; all p < 0.05). The adjusted HR of mortality remained elevated for any kidney disease (HR = 1.25; 95%CI = 1.09–1.45) and ESKD (HR = 1.38; 95%CI = 1.10–1.74).Discussion: Kidney disease, especially ESKD, is associated with mortality among adults with CP independent of comorbidities that are relevant to CP and kidney disease. Findings suggest that nephrology care should be considered as part of routine clinical care for this population.

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“…Second, as Jonsson et al observe, there is a major need for clinicians that are interested in becoming knowledgeable about adults with CP and the challenges they face. Along with the well documented problem of loss of mobility function as described in this paper, this population faces increased risk of many chronic diseases which occur at an earlier point in life than seen in their typically developing peers 3 . Managing these problems is complicated by physiological alterations that lead to different approaches to screening and monitoring, as well as treatment.…”

mentioning

confidence: 96%

“…Along with the well documented problem of loss of mobility function as described in this paper, this population faces increased risk of many chronic diseases which occur at an earlier point in life than seen in their typically developing peers. 3 Managing these problems is complicated by physiological alterations that lead to different approaches to screening and monitoring, as well as treatment. Adults with CP need informed, coordinated care, but there is currently a lack of clinicians interested in both individuals with pediatric-onset problems and adult populations.…”

mentioning

confidence: 99%