Approximately 1 in every 400 adults in the UK has cerebral palsy. Cerebral palsy is a condition that results from an injury to the developing brain that primarily affects a person's ability to move. Adults with cerebral palsy experience a number of secondary conditions with age such as chronic fatigue and pain. These symptoms feed into a negative cycle of decline in mobility, physical inactivity, and physical condition, which may lead adults with CP to develop chronic diseases such as heart disease. A recent study reported that adults with cerebral palsy in the US have significantly higher estimates of stroke, hypertension, other heart conditions and arthritis, compared with adults without cerebral palsy. To date, the prevalence of chronic diseases hasn't been investigated in adults with cerebral palsy in the UK. We propose to examine the prevalence of chronic diseases, medical resource utilisation and associated costs, and causes of mortality among adults with cerebral palsy in the UK. This will provide important information for planning future healthcare provision for adults with cerebral palsy in the UK.
The aim of this study is to examine the prevalence of chronic diseases, medical resource utilisation and associated costs, and causes of mortality among adults with cerebral palsy (CP) in the UK. We will compare adults with CP and matched controls without CP. Chronic diseases of interest are type 2 diabetes mellitus, asthma, chronic obstructive pulmonary diseases, hypertensive diseases, ischaemic heart diseases, other heart diseases, cerebrovascular diseases, chronic pain, arthritis, depression and anxiety, dementia, osteoporosis, incontinence, cancers (i.e. oesophageal, colon, lung, breast, prostate), falls, diseases of the digestive system, hearing impairment, visual impairment. Medical resource utilisation will be identified as the number of primary care and outpatient consultations, the rate and length of hospitalisation, and number of prescriptions issued and investigations ordered. For each outcome, a regression model will be fitted, adjusting for covariates (body mass index, ethnicity, smoking status, alcohol consumption, marital status, education, income, level of disability, and level of physical activity). Overall mortality rates and mortality rates stratified by the most frequent ICD-10 chapter headings will be calculated. Standardised mortality rates will be calculated as a ratio of the observed number of deaths among adults with CP to the expected number of deaths in the general population.
A first event of the following chronic diseases will be ascertained using a record of a Read code from the clinical file: type 2 diabetes mellitus, asthma, bronchitis, emphysema and other chronic obstructive pulmonary diseases, hypertensive diseases, ischaemic heart diseases, other heart diseases (including pulmonary embolism, heart failure, atrial fibrillation and flutter), falls, diseases of the digestive system, hearing impairment, cerebrovascular diseases, chronic pain, osteoarthritis, rheumatoid arthritis, depression and anxiety, dementia, osteoporosis, incontinence, cancers (i.e. oesophageal, colon, lung, breast, prostate), hearing impairment, and visual impairment. Medical resource utilisation will be determined using the following variables: - The overall primary care consultation rate will be calculated as the sum of all recorded consultations in primary care. Each consultation will be classified by consultation type and staff type using information from the Consultation file. - The overall rate of outpatient consultations will be calculated as the sum of all recorded outpatient appointments in the outpatient HES data. - The overall hospitalisation rate will be calculated as the sum of all recorded hospital admissions in the subpopulation of people with linked HES data. - The length of hospitalisation will be calculated by subtracting the admission date from the discharge date in the inpatient HES data. - The number of prescriptions issued will be obtained from the Therapy file. - The number of investigations ordered including pathology and diagnostic services will be obtained from the Test file. These will be grouped by investigation type. The cost associated with medical resource utilisation will be defined as follows: - Each primary care consultation will be assigned an average cost as listed in the Unit Cost of Health and Social Care 2010 from the Personal Social Services Research Unit. - Each outpatient visit will be allocated an outpatient tariff. - The cost of inpatient admissions will be calculated using NHS Reference Costs. - Each prescription will attributed a net ingredient cost from the corresponding year of the Prescription Cost Analysis. - Each investigation will be allocated a cost using NHS Reference Costs. Causes of death will be determined and grouped using ICD-10 chapter headings recorded in the ONS death register.
Jennifer Ryan - Chief Investigator - Brunel University London
Jennifer Ryan - Corresponding Applicant - Brunel University London
Christina Victor - Collaborator - Brunel University London
Kimberly Smith - Collaborator - Brunel University London
Mark Peterson - Collaborator - University Of Michigan
Nana Kwame Anokye - Collaborator - Brunel University London
Neil O'Connell - Collaborator - Brunel University London
Nicola Ryan - Collaborator - Hospital Clinico San Carlos
Silvia Liverani - Collaborator - Brunel University London
HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data