ImPaCT-PID study (Improving Patient Centred Transitional Care in Primary Immunodeficiency)
2022 AIFA Early Career Researcher
Dr Alisa Kane, St Vincent’s Hospital
Dr Kane will collaborate with the national patient organisation Immune Deficiencies Foundation of Australia (IDFA) and colleagues nationwide at the University of NSW, Sydney Children’s Hospital, The Children’s Hospital at Westmead, Concord General Hospital, the Garvan Insitute of Medical Research (NSW); Princess Alexandria Hospital (QLD); Monash Health (VIC); Royal Adelaide Hospital (SA); Royal Perth Hospital, and Fiona Stanley Hospital (WA).
Primary immunodeficiencies (PIDs) are rare, mostly genetic, disorders that result from the failure of the immune system to work properly. People with PIDs suffer from chronic disease, poor quality of life and even premature death due to severe, recurrent and often life-threatening infection, immune disorders, allergies and cancers.
PIDs are typically diagnosed in childhood and lead to life-long health problems. This means that the patient journey involves eventually moving from a children’s health care service to an adult health care service. This is can be a time of immense and stressful change as the young person encounters new doctors, new hospitals, and learns to understand their own health and make health decisions for themselves. It is also a difficult time for their carers, as their role changes from primary decision-maker to support person.
Transitional care is a specific, deliberate and co-ordinated process where this change from child to health care is supported is supported by resources, services and people. Currently in Australia, PID transitional care either doesn’t exist or is underdeveloped.
The ImPaCT-PID (Improving person-centered transitional care in PID) study seeks to improve this experience. In order to provide a better health service for young patients moving to adult care, this study brings together PID patients, their carers, the Immunodeficiency Foundation of Australia (IDFA) and health professionals from around Australia, to develop a better understanding of patient experiences of transition. They will gather the current experiences of patients and their carers through surveys and interviews, identify existing gaps in the service, and develop person-centred solutions to improve the quality of care and experiences of young people with PID transitioning into adult health services.
AIFA Early Career Researcher grant of $30,000