Transition from child to adult health services

Young person and parent carer survey now open

This study has been commissioned by the Healthcare Quality Improvement Partnership
as part of the Child Health Clinical Outcome Review Programme, as part of the current contract awarded in 2019
For information on how we use data click here

Data collection for study: To commence July 2021  
Publication date:      TBC   

Aim
To explore the barriers and facilitators in the process of the transition of young people with complex chronic conditions from child to adult health services.

Participation
Identifiable information – Providers of primary, community, physical and mental healthcare. Non-identifiable information – Voluntary sector organisations, commissioning organisations, local authorities and hospices.

Data collection
Case identification spreadsheet
Data will be collected over an 18-month period from 1st October 2019 – 31st March 2021, and will include young people aged between 13 years and their 25th birthday with a complex chronic condition, transitioning from child to adult health services.

Young people will be identified via:

• Primary care (all young people under the care of the practice with one of the included conditions/SNOMED codes)
• Community hospitals (all young people referred with an included condition/ICD10 code)
• Physical healthcare (all young people admitted with an included condition/ICD10 code)

The patient identification spreadsheet will be sent out in two stages:

• Transition patient identifier spreadsheet A: This will ask for a limited amount of data to identify all young people who fit the study criteria. This will include the NHS/Hospital number, DOB, sex and included condition details.
• Transition patient identifier spreadsheet B: This will ask for more detailed information on fifteen young people per hospital identified from spreadsheet A. This will include the details of all conditions each young person has and the details of the clinical teams providing care.

Clinician questionnaires
Up to 15 young people per hospital will be sampled for inclusion. Where the patient is under the care of multiple specialties within the same organisation, the clinician questionnaire will be sent for each of the individual teams. In addition to this, questionnaires will also be sent if the hospital is identified as providing care to a young person identified for inclusion in the study via another organisation. Questionnaires will be sent to teams in the primary, community, physical and mental health care settings.

Case note extracts for peer review
Case notes will be requested from primary, community, physical and mental healthcare services. If a young person is identified and tracked across a number of care settings, case notes will be requested from all organisations. If a young person is seen in multiple clinics/by multiple specialties within the same organisation, case notes will be requested from all services.

Organisational questionnaires
Questionnaires will be sent to all primary, community, physical and mental healthcare organisations via the online questionnaire system.

Definitions:
Please click here for the study definitions.