Data collection for study: Data collection now open. Publication date: November 2019
To identify remediable factors in the care of patients before their 25th Birthday who are receiving, or have received, long-term ventilation (LTV).
To review the organisation of care of long-term ventilation services including; access to services and health care teams, case co-ordination (including both inpatient and outpatient care, the role of primary care, the urgent care pathway, support services (including psychological support services), access to equipment, the availability of allied health professional services, and the role of external providers and case managers, and community health/home care teams in care packages)
To review the transfer process (escalation and de-escalation of care), and to determine the role of local secondary care providers when patients are admitted/readmitted
To review the provision of access to, communication and planning within, and the skill mix of multidisciplinary care teams and evidence of shared decision making with providers outside the LTV centre
To review the networks of care for this group of young patients across different service providers and across all professional groups
To examine organisational aspects of care including the use of local and national guidelines, protocols and service specifications
To review training and delivery of long-term ventilation in hospitals and at home (including expected competences vs. demonstrated confidence, and the safety of tracheostomy care/supporting respiratory management) for staff and carers
To understand and inform the future local and specialist commissioning for this complex care pathway
To identify remediable factors in the quality of care received and produce recommendations for improvement, such as the management of complications
To describe the routine management, case diversity and complexity including multiple comorbidities
To review the decision-making process (including delays to discharge and transfer, variation in risk management, the management of transitions in care, and the process of Multi-disciplinary Team (MDT) decision making prior to LTV)
To review the informed consent process prior to initiating an LTV pathway (including tracheostomy insertion) and discussion of risk at stages thereafter e.g. prior to discharge from Paediatric Critical Care and/or hospital
To review the appropriateness of the location of care (i.e. in hospital when children and young people should be at home and vice versa)
To review communication between clinical teams
To review safety aspects including routine patient and equipment monitoring and respiratory/tracheostomy care
To identify whether the physical and psychosocial and emotional well-being needs of patients and families receiving LTV in hospital or at home are met, at each step of the pathway
To determine what initial and ongoing training and support is available to parent carers
To describe the urgent care pathway for patients already established on LTV
To specifically review the clinical care provided during transition between paediatric and adult services, including delays, communication issues and leadership/ownership
Long-Term Ventilation is defined as ‘ventilation provided every day for 3 months (invasive and non-invasive) where the intention is/was to maintain the patient at home on continued ventilatory support (not home oxygen).
A nominated study contact will identify all patients receiving LTV under their service over a two year period from the 1st April 2016 to 31st March 2018 (method detailed below) and populate them in a Case Identifier Spreadsheet. Cases for inclusion in the peer review process will include those patients who were newly commenced on LTV in the two year period, and those patients on the follow up pathway.
Study contacts will need to be in place in both adult and paediatric services. Where multiple areas of care are in place within a site a study contact will be set up in each area with one primary contact in place who will be responsible for coordinating the study overall within the hospital.
This contact will be asked to populate a spreadsheet with the details of all patients under their Trust/Health Board’s care over the two year study period (both on the newly commenced and follow up pathways).
Patients discharged on home oxygen
Participating providers of healthcare
All hospitals and services where children, young people and young adults under the age of 25 years old on long-term ventilation (both invasive and non-invasive) may be cared for will be asked to participate in the study. These will include community and acute providers that deliver critical care, respiratory services, long-term ventilation and step down services. This will include hospitals and services where:
Long term ventilation is initiated
Patients aged 0-25 receiving LTV are or could be care for (both acute and community)
Emergency care is provided
The hospital provides home ventilation
Patient identifier spreadsheets were disseminated in November 2018.
Clinical Questionnaires and Case Notes
Questionnaire dissemination started in January 2019 and will be ongoing until April 2019.
The organisational questionnaire is due to be disseminated in February 2019.
Recruitment of case note reviewers for this study is now closed.