Dataset Information

Developing a cerebral palsy-specific preference-based measure for a six-dimensional classification system (CP-6D): protocol for a valuation study.

ABSTRACT:

Introduction

Cerebral palsy (CP) is a lifelong condition. The CP quality of life (CPQOL) instrument is a frequently used disease-specific instrument to assess health-related quality of life (HRQoL) in people with CP, but it cannot be used to generate quality-adjusted life years (QALY) which are the basis of cost utility analysis (CUA). Generic utility instruments (such as the EQ-5D or SF-6D) that are used to value HRQOL may be insensitive to small but important health changes in children with CP. This study aims to generate a preference-based scoring algorithm for the CP six dimensions (CP-6D), a classification system developed from the CPQOL.

Methods and analysis

A discrete choice experiment with duration (DCEtto) will be administrated to value health states described by the CP-6D classification system. These health states will be presented to members of Australian general population and parents of children with CP via an online survey. Conditional logit regression will be used to produce the utility algorithm for CP-6D.

Ethics and dissemination

The Griffith University Human Research Ethics Committee approved for the study (reference HREC/number 2018/913). The developed algorithm can be applied to previous and future economic evaluation of interventions and treatments targeting people with CP which have used either the CPQOL or CP-6D.

SUBMITTER: Bahrampour M

PROVIDER: S-EPMC6747638 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Publications

Developing a cerebral palsy-specific preference-based measure for a six-dimensional classification system (CP-6D): protocol for a valuation study.

Bahrampour Mina M Norman Richard R Byrnes Joshua J Downes Martin M Scuffham Paul A PA

BMJ open 20190912 9

<h4>Introduction</h4>Cerebral palsy (CP) is a lifelong condition. The CP quality of life (CPQOL) instrument is a frequently used disease-specific instrument to assess health-related quality of life (HRQoL) in people with CP, but it cannot be used to generate quality-adjusted life years (QALY) which are the basis of cost utility analysis (CUA). Generic utility instruments (such as the EQ-5D or SF-6D) that are used to value HRQOL may be insensitive to small but important health changes in children ...[more]

PMID: 31515422

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Project description:BackgroundCerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population.ObjectiveThe overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP.MethodsMOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed.ResultsThe individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained.ConclusionsIn this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP.International registered report identifier (irrid)DERR1-10.2196/13883.

Project description:OBJECTIVES:Cerebral palsy (CP) remains the world's most common childhood physical disability with total annual costs of care and lost well-being of $A3.87b. The PREDICT-CP (NHMRC 1077257 Partnership Project: Comprehensive surveillance to PREDICT outcomes for school age children with CP) study will investigate the influence of brain structure, body composition, dietary intake, oropharyngeal function, habitual physical activity, musculoskeletal development (hip status, bone health) and muscle performance on motor attainment, cognition, executive function, communication, participation, quality of life and related health resource use costs. The PREDICT-CP cohort provides further follow-up at 8-12 years of two overlapping preschool-age cohorts examined from 1.5 to 5 years (NHMRC 465128 motor and brain development; NHMRC 569605 growth, nutrition and physical activity). METHODS AND ANALYSES:This population-based cohort study undertakes state-wide surveillance of 245 children with CP born in Queensland (birth years 2006-2009). Children will be classified for Gross Motor Function Classification System; Manual Ability Classification System, Communication Function Classification System and Eating and Drinking Ability Classification System. Outcomes include gross motor function, musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function, communication difficulties, oropharyngeal dysphagia, dietary intake and body composition, participation, parent-reported and child-reported quality of life and medical and allied health resource use. These detailed phenotypical data will be compared with brain macrostructure and microstructure using 3 Tesla MRI (3T MRI). Relationships between brain lesion severity and outcomes will be analysed using multilevel mixed-effects models. ETHICS AND DISSEMINATION:The PREDICT-CP protocol is a prospectively registered and ethically accepted study protocol. The study combines data at 1.5-5 then 8-12 years of direct clinical assessment to enable prediction of outcomes and healthcare needs essential for tailoring interventions (eg, rehabilitation, orthopaedic surgery and nutritional supplements) and the projected healthcare utilisation. TRIAL REGISTRATION NUMBER:ACTRN: 12616001488493.

Project description:Cerebral palsy (CP) is one of the most frequent causes of motor disability in children. According to the up-to-date definition, CP is a group of permanent disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing foetal or infant brain. The CP definition has evolved over time; the problem is aetiologically and clinically very heterogeneous. According to European data, the average frequency of CP is 2.08 per 1000 live births, but in the group of children born with a body weight below 1500 g, the frequency is 70 times higher when compared with the group of children with a body weight over 2500 g at birth. The risk factors for CP can be divided into pre-conception, prenatal, perinatal and postnatal ones. CP commonly co-exists with epilepsy, in particular drug-resistant epilepsy, but also with mental retardation, visual and hearing impairment, as well as feeding and behavioral disorders. The degree of motor problem varies from mild to very severe making the child totally dependent on caregivers. Cerebral palsy is divided into forms depending on the type of motor disorders which dominate the clinical presentation; the traditional classifications by Ingram and Hagberg have now been replaced by the Surveillance of Cerebral Palsy in Europe classification which divides CP into spastic, dyskinetic and ataxic forms. Although cerebral palsy is a clinical diagnosis, modern diagnostic imaging provides information that allows the division of the results of magnetic resonance imaging in children with cerebral palsy into five groups according to the magnetic resonance imaging classification system. Just as the clinical presentation and the factors predisposing for CP are very diverse, treatment is also a very complex problem. Modern treatment of spasticity includes both botulinum toxin therapies and surgical techniques, eg, rhizotomy. The authors present current views on definitions, risk factors, diagnostics and treatment of CP as well as comorbid problems, eg, drug-resistant epilepsy.

Project description:Health-related quality of life (HRQOL) is one of the most important outcome measures to be assessed by medical research. This study aims to develop and validate an instrument called the "health-related quality of life with six domains" (HRQ-6D), which aims to measure an individual's health-related quality of life within a 24 h period of time. This is a questionnaire development study involving five phases, which are (i) to explore the subject matter content for gaining a better understanding of the topic, (ii) to develop the questionnaire, (iii) to assess both its content validity and face validity, (iv) to conduct a pilot study, and finally, (v) to undertake a field testing of the questionnaire. For the field-testing phase, a cross-sectional study involving a self-administered survey for HRQ-6D items was conducted among healthcare workers with various health conditions. Exploratory factor analysis was initially applied to construct the major dimensions of the HRQ-6D. Confirmatory factor analysis was subsequently applied to evaluate the model fit of the overall framework of the HRQ-6D. The clinical utility of this HRQ-6D was also assessed via its association with actual clinical evidence. A total of 406 respondents participated in the survey. Six domains were identified from the analysis, namely "pain", "physical strength", "emotion", "self-care", "mobility", and "perception of future health" comprising two items in each domain. Each domain was reported to have a minimum value of Cronbach's alpha of 0.731, and the model fit for the overall framework of the HRQ-6D was also found to be excellent. Exploratory factor analysis was undertaken for the 12 items of the HRQ-6D. All the domains can be categorized into three major dimensions, namely "health", "body function", and "future perception", with a minimum value for their factor loadings of at least 0.507. A notable finding was that the HRQ-6D was significantly associated with an individual's existing comorbidities and current status of health (p < 0.05). This study successfully validated the HRQ-6D, and we found it to possess both excellent levels of reliability and validity and a satisfactory degree of model fit; it was also significantly associated with actual clinical evidence.

Dataset Information

Developing a cerebral palsy-specific preference-based measure for a six-dimensional classification system (CP-6D): protocol for a valuation study.

Introduction

Methods and analysis

Ethics and dissemination

Publications

Developing a cerebral palsy-specific preference-based measure for a six-dimensional classification system (CP-6D): protocol for a valuation study.

Similar Datasets

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