Reliability and validity of the adapted Finnish version of the early onset scoliosis questionnaire (EOSQ-24).

Background: EOSQ-24 is a disease specific patient-reported outcome score used to assess the quality of life in patients with early-onset scoliosis. The aim of this study was to translate and cross-culturally adapt the English version of the EOSQ-24 to Finnish language and to assess the reliability and validity of the translation.

Methods: Cross-cultural adaptation and cross-cultural validation were performed to the Finnish translation of the EOSQ-24.

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.

Surgical and Health-related Quality of life Outcomes in Children With Congenital Scoliosis During 5-year Follow-up. Comparison to Age and Sex-matched Healthy Controls.

Background: Congenital spinal anomalies represent a heterogeneous group of spinal deformities, of which only progressive or severe curves warrant surgical management. Only a limited number of studies have investigated the impact of surgery on the health-related quality of life and very limited data exists comparing these outcomes to healthy controls.

Methods: A single surgeon series of 67 consecutive children with congenital scoliosis (mean age at surgery 8.

Development and pilot test of a pregnancy decision making tool for women with physical disabilities.

Objective: Design and pilot test a new decision making tool for women with physical disabilities (impairment of physical function due to chronic conditions) considering pregnancy.

Data Sources And Study Setting: Quantitative surveys and qualitative interviews were collected from participants living in the community.

Study Design: Clinical guidelines and survey and focus group data about pregnancy informational and decisional needs guided content development.

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.

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.

Musculoskeletal Morbidity Among Adults Living With Spina Bifida and Cerebral Palsy.

Background: Individuals living with cerebral palsy (CP) or spina bifida (SB) are at heightened risk for chronic health conditions that may develop or be influenced by the impairment and/or the process of aging.

Objectives: The objective of this study was to compare the incidence of and adjusted hazards for musculoskeletal (MSK) morbidities among adults living with and without CP or SB.

Methods: A retrospective, longitudinal cohort study was conducted among adults living with ( = 15,302) CP or SB and without ( = 1,935,480) CP or SB.

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).

Physical and occupational therapy utilization and associated factors among adults with cerebral palsy: Longitudinal modelling to capture distinct utilization groups.

Background: Adults with cerebral palsy (CP) experience functional declines. Clinical rehabilitation may preserve function for this population.

Objective: To identify longitudinal physical/occupational therapy use and associated factors among adults with CP, to inform health promotion strategies.

Pain Phenotypes in Adults Living With Cerebral Palsy.

Background And Objectives: To identify pain phenotypes among adults living with cerebral palsy (CP) and compare phenotypes of pain intensity, anxiety and depressive symptoms, and self-reported perceived stress.

Methods: Seventy-one adults with CP presented to the University of Michigan (mean age = 39.3 ± 16.

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.

Pain phenotypes among adults living with cerebral palsy and spina bifida.

Chronic pain is the most commonly reported physical symptomology of cerebral palsy (CP) and spina bifida (SB) throughout the lifespan, and yet, pain is perhaps the least understood comorbidity in these populations. The objective of this study was to compare the prevalence and types of pain diagnosed among adults living with and without CP or SB. In this retrospective cohort study, we analyzed data from a nationwide commercial insurance claims database.

Timecourse of Morbidity Onset Among Adults Living With Cerebral Palsy.

Introduction: Despite the greater risk of an array of morbidities, little is known about when morbidities occur for adults with cerebral palsy. The objective of this study is to determine the timecourse of morbidity risk/development for adults with cerebral palsy and the effect by patient-level factors.

Methods: Cross-sectional data from 2016 were used from a random 20% sample from the fee-for-service Medicare database.

Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.

Background: While the literature on pregnancy and disability is growing, generating important knowledge of barriers to care and health risks, there is limited literature on pregnancy decision-making and informational needs. Such knowledge is critical for the development of interventions to mitigate the challenges women with disabilities and health care providers face in making this important decision.

Objective: /Hypothesis: Develop a survey of pregnancy decisional and informational needs of women with physical disabilities.

Polypharmacy is a risk factor for mortality, severe chronic kidney disease, and liver disease among privately insured adults with cerebral palsy.

Adults with cerebral palsy (CP) have an increased risk for polypharmacy, premature mortality, and early development of several morbidities, including conditions associated with excess medication exposure, such as chronic kidney disease (CKD) and liver disease. To date, very little is known about the consequence of polypharmacy for adults with CP. To determine if polypharmacy is associated with an increased risk for mortality, severe CKD, and liver disease among adults with CP, before and after adjusting for comorbid neurodevelopmental disabilities (NDDs) and multimorbidity.

Associations of cardiorespiratory fitness, adiposity, and arterial stiffness with cognition in youth.

Purpose: To investigate the associations of cardiorespiratory fitness, adiposity, and arterial stiffness with cognition in 16- to 19-year-old adolescents.

Methods: Fifty four adolescents (35 girls; 19 boys) participated in the study. Peak oxygen uptake (V̇O ) and peak power output (W ) were measured by the maximal ramp test on a cycle ergometer and ventilatory threshold (VT) was determined with ventilation equivalents.

Shilla Growth Guidance Compared With Magnetically Controlled Growing Rods in the Treatment of Neuromuscular and Syndromic Early-onset Scoliosis.

Study Design: Retrospective review of consecutive series of patients treated at two institutions.

Objective: The aim of this study was to compare the health-related quality of life (HRQoL) and surgical outcomes of Shilla growth guidance and magnetically controlled growing rod (MCGR) treatment in patients with syndromic and neuromuscular early-onset scoliosis (EOS).

Summary Of Background Data: Knowledge of the outcomes of Shilla instrumentation is limited.

Polypharmacy Among Privately Insured Adults with Cerebral Palsy: A Retrospective Cohort Study.

Background: Adults with cerebral palsy (CP) have increased risk for developing various secondary chronic diseases, especially when they have other neurodevelopmental disabilities (NDDs). Multiple medications are likely prescribed to manage the greater morbidity-related burden for adults with CP; however, because health care delivery and care coordination is suboptimal for this population, adults with CP may have an increased risk for polypharmacy. To date, very little is known about the prescribing practices and extent of polypharmacy for adults with CP.

Psychological morbidity among adults with cerebral palsy and spina bifida.

Background: Very little is known about the risk of developing psychological morbidities among adults living with cerebral palsy (CP) or spina bifida (SB). The objective of this study was to compare the incidence of and adjusted hazards for psychological morbidities among adults with and without CP or SB.

Methods: Privately insured beneficiaries were included if they had an International Classification of Diseases, Ninth revision, Clinical Modification diagnostic code for CP or SB (n = 15 302).

Cardiometabolic Morbidity in Adults With Cerebral Palsy and Spina Bifida.

Purpose: The purpose of this study was to compare the incidence of, and adjusted hazards for, cardiometabolic morbidities among adults with and without cerebral palsy or spina bifida.

Methods: Privately insured beneficiaries were included if they had an International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) diagnostic code for cerebral palsy or spina bifida (n = 15,302). Adults without cerebral palsy or spina bifida were also included (n = 1,935,480).

Longitudinal associations of physical activity and pubertal development with academic achievement in adolescents.

Objective: We sought to investigate the longitudinal associations of moderate-to-vigorous physical activity (MVPA) and pubertal development with academic achievement in adolescents.

Methods: A total of 635 adolescents (283 boys, 352 girls) aged 11-13 years participated in the study. MVPA was assessed by the Health Behaviour in School-aged Children study questionnaire, and pubertal development was assessed by the Pubertal Development Scale at beginning of the 6th grade (baseline) and end of the 7th grade (follow-up).

Effect of pain on mood affective disorders in adults with cerebral palsy.

Aim: To determine if pain is associated with 12-month incidence of mood affective disorders (MAD) in adults with cerebral palsy (CP).

Method: Data from Optum Clinformatics Data Mart (2013-2016) were used for this retrospective cohort study. Diagnostic codes were used to identify adults (≥18y) with CP, incident cases of MAD, and covariates (other neurodevelopmental conditions, sleep disorders, arthritis).

Self-report of pain in young people and adults with spastic cerebral palsy: interrater reliability of the revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) scale ratings.

Aim: People with cerebral palsy (CP) are often unable to express pain owing to cognitive or speech impairments. Reports that rely on observation can be inaccurate, because behaviours such as grimacing, common in people with spastic CP, resemble pain expressions. We examined preliminary validity and reliability of the revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) scale in people with spastic CP.

Differences in physical activity at recess and school-related social factors in four Finnish lower secondary schools.

This study investigated the differences in physical activity (PA) at recess and school-related social factors, and described school PA promotion processes and staff experiences at four lower secondary schools from the Finnish Schools on the Move programme. Recess PA, peer relationships at school, relatedness to school, and school climate were assessed via surveys with eighth-grade students in spring 2011 (n = 385) and spring 2013 (n = 373). Local contact people in the school projects (n = 6), school staff (n = 83) and principals (n = 3) provided information on the PA promotion process via telephone interviews and surveys.