Feasibility study on care pathway for attention deficit hyperactive disorder between the primary and secondary care settings

Study type
Feasibility Study
Date of Approval
Study reference ID
FS_003957
Lay Summary

Attention deficit hyperactivity disorder (ADHD) can cause a person to have problem concentrating, being overactive or act on impulse. Both children and adults can be affected. It is usually accompanied with other psychological conditions, such as anxiety and depression, which can pose challenges for its accurate diagnosis. Given that the disorder is under-recognised among adults, many are untreated or under-treated and have experienced problems in their adult life, including disability, impaired quality of life, poor marital relationships, poor work performance, and sometimes premature death due to their increased likelihood to accidents. There is also limited data on how many patients continue with their ADHD care whether from childhood to adulthood but especially for patients who were diagnosed in adulthood. To investigate this further, it is important to identify the correct data source to describe ADHD patients’ care from childhood to adulthood and for those who were diagnosed in adulthood. Their persistence and compliance in continuing ADHD care, including ‘shared’ care between general practitioners and psychiatrist, need to be described for United Kingdom. This feasibility study proposed here will assess whether the Clinical Practice Research DataLink linked to the Hospital Episodes Statistics has the relevant primary and secondary care data to facilitate this study. The findings from this feasibility will inform the decision to undertake future research in describing the problem that ADHD patients encounter in continuing their care so that healthcare professionals and service provide can find solutions to address them.

Technical Summary

Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder that manifests as trouble concentrating, hyperactivity, and impulsiveness. ADHD can affect children and adults. However, it is less recognised among adults. ADHD can have an adverse impact on a person's quality of life, relationships, parental responsibility, work productivity, and being prone to have accidents. Comorbid psychological conditions, such as anxiety, depression and obsessive-compulsive disorders, can make the diagnosis of ADHD challenging. This feasibility study will assess how the Clinical Practice Research DataLink (CPRD) linked to the Hospital Episodes Statistics (HES) datasets can be utilised to describe persistence and adherence in continuing ADHD care, including ‘shared’ care between general practitioners and psychiatrist. The possibility of describing ADHD patients’ care from childhood to adulthood and for those who were diagnosed in adulthood will also be assessed. Basic summary statistics (including counts, proportions, mean and, standard deviations, medians and interquartile ranges, etc) will be obtained and finding on less than 5 patients will be suppressed. Rates in person-time will be calculated wherever appropriate. The findings from this feasibility will inform the decision to undertake future research in describing the problems that ADHD patients encounter in continuing their care so that healthcare professionals and service providers can find solutions to address them. Measures in improving access or ensuring continued ADHD care in adulthood can lessen the impact of ADHD on their disability, work performance and bring improvement to their quality of life, relationships, parental responsibility as well as reduce the likelihood of premature death due accidents. In turn, these can lessen the burden of health and social care.

Health Outcomes to be Measured

Diagnosis by age group or age
ADHD care: prescribed medications, other forms of therapy, duration of treatment
Persistence and adherence to prescribed medication and follow up care
Reasons for discontinuation or switch
Specialty
Hospitalisation
Care received in: primary setting, inpatient, outpatient, Accident and Emergency
Comorbidities
Difference in care by level of deprivation
Mortality (all cause and cause-specific)
Referrals between primary and secondary care
Childbirth among patients with ADHD (as proxy to parental responsibility)

Collaborators

Indraraj Umesh Doobaree - Chief Investigator - Takeda UK Limited
Indraraj Umesh Doobaree - Corresponding Applicant - Takeda UK Limited
Ananya Roy Chowdhury - Collaborator - Takeda Development Center Americas, Inc.
Ning (Julia) Zhu - Collaborator - Takeda Development Center Americas, Inc.
SUDHAKAR MANNE - Collaborator - Takeda Development Center Americas, Inc.

Linkages

CPRD Aurum Pregnancy Register;CPRD GOLD Pregnancy Register;CPRD GOLD Mother-Baby Link;HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;CPRD Aurum Mother-Baby Link;Practice Level Index of Multiple Deprivation (Standard)