Adole7C- long-term conditions
Short description
The Adole7C project aims to identify risk factors for interruptions in medical follow-up. The project is generic in its idea, and thus relevant to all young people with various long-term conditions.
By identifying risk factors for care discontinuity, the project hopes to ease the identification of adolescents and young adults at risk of interruption in care. Increased knowledge of influential risk factors will further ease the development of effective preventive measures for interruptions in medical follow-up. Optimizing care continuity for young people with chronic disease will likely lead to better health status and in the long run improved quality of life.
Currently, The Adole7C project is divided into different branches, targeting different patient cohorts and levels of risk factors.
The overall aim is to map and study patient and hospital-related causes that lead to interruptions in the medical follow-up of young people with long-term conditions (organ transplant recipients, asthma/allergy, congenital heart disease and young people with type 1 diabetes) as well as to investigate the consequences of such interruption, including medical expenses.
Background
Over the past few decades, there has been a significant increase in the number of children with chronic conditions, which is due to the development of better medical therapies and diagnostic tools. Unfortunately, patients cannot be considered cured, as they may face long-term complications and sequelae. As a result, young people with chronic conditions require lifelong medication and follow-up care, which can be especially challenging during the vulnerable period of adolescence and the simultaneous transfer from paediatric to adult care services.
Despite the importance of providing lifelong medical follow-up care for young people with chronic conditions, face gaps in the continuity of care, including repeated missed appointments. These gaps can have far-reaching consequences, such as increased morbidity rates, long-term complications, a higher number of hospitalizations, and a risk of negative psychosocial consequences. To address this issue, it is essential to identify predictors and consequences of care gaps and develop strategies to prevent suffering and premature death.
Purpose
The purpose of the Adole7C – long-term conditions project is to deepen our understanding of the mechanisms affecting and predicting care gaps, develop effective preventive strategies, and identify hospital and primary care-related factors that can contribute to a successful transfer to adult care and adult life.
To project aims to investigate patient-, hospital- and primary care-related predictors for care gaps in young people with congenital or childhood-onset chronic conditions, and to investigate the consequences on mortality, morbidity, and social functioning.
Specific objectives
The project specifically intends to study and identify:
1. The proportion of young people with long-term conditions who have interruptions in medical follow-up
2. Patient- and hospital-related factors of importance for interruptions in the medical follow-up
3. The consequences of interruptions in medical follow-up in terms of mortality, morbidity, and social functioning
4. The consequences of interruptions in the medical follow-up in terms of healthcare consumption and related costs
Significance and novelty of the project
The results from Adole7C have the potential to identify patient- and hospital-related factors associated with interruptions in medical follow-up. By identifying such factors, the healthcare staff can identify adolescents and young adults who are at risk of interruption in care and preventive measures related to the individual as well as the hospital organizational level can be developed. This can lead to optimized follow-up for this group of patients, which will lead to better health and quality of life.
This study offers novel contributions in two key areas.
Firstly, it provides evidence for the first time on how hospital-related factors, such as in-patient and specialized outpatient care can impact care gaps beyond patient-related factors. This is a significant advancement as such factors have been overlooked in prior research. Secondly, the study scrutinizes the consequences of care gaps in terms of mortality, morbidity, and social functioning. This allows for a more comprehensive understanding of the implications of care gaps on individuals' health and overall well-being. By shedding light on these outcomes, the study provides valuable insights that can inform policies and interventions aimed at reducing care gaps and improving care for individuals with chronic conditions.
Researchers in the project:
The project is conducted in collaboration with several units within the Sahlgrenska University Hospital in Gothenburg.
Principal investigator: Ewa-Lena Bratt
Project coordinator: Sandra Skogby
Other researchers within the research group:
Hanna Gyllensten, Carina Sparud Lundin, Philip Moons
Other partners outside of the research group:
Annette Lennerling Transplantation Center, Sahlgrenska University Hospital, Emma Goksör, Allergy Clinic, Sahlgrenska University Hospital, and Kristina Malmgren, Epilepsy Center, Sahlgrenska University Hospital.
Status
The project is ongoing.
