Johns Hopkins pediatric nephrologist Cozumel Pruette discusses her research concerning transition from pediatric to adult health care for patients with chronic kidney disease. Information from this study is based on data from collaboration and interactions among patients, their families and health care practitioners.
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Pediatric nephrologist Cozumel Pruette is focused on helping pediatric patients living with chronic kidney disease transition to adult health care aided by individual and family support systems. Click to Tweet
I'm Cozumel Pruitt. I am an assistant professor of pediatrics in the division of pediatric nephrology at the johNS Hopkins Children's Center and I'm excited to talk with you about our work focused on health care transition and adolescents and young adults with chronic kidney disease. Focus on the individual and family support system. This work was published this year in the advances in chronic kidney disease journal health care transition from pediatric to adult focused services is a longitudinal process driven by the collaboration and interactions of adolescent and young adult patients and their families providers, healthcare agencies and the environment. Health care providers in both pediatric and adult focus settings must collaborate as patients. Health self management skills are acquired in the mid twenties after they have transferred to adult focus care. The importance of supporting adolescents and young adults with chronic conditions during the health care transition process is well recognized by many medical associations. There are several consensus statements that provide guidance and a nice framework for health care transition with common threads, including the team approach, which includes the patient caregiver, family members and health providers. While these consensus reports exist, many have recognized that providers and medical teams encountered real challenges in attempting to follow guidelines and existing frameworks. There's a conceptual model for clinical and research work that has been developed by the international and interdisciplinary healthcare transition research Consortium And this divides the health care transition into four domains individual family and social support health care system and environment. This model also illustrates the dynamic interplay between pediatric and adult focused providers that's required to implement interventions and continue communications. Our manuscript discusses the individual and family support systems as they relate to adolescents and young adults with chronic or end stage kidney disease in the individual domain, we discuss demographic and socioeconomic characteristics, disease complexity and disease course, cognitive capabilities and self management and self advocacy in the family domain. We discussed family composition and cultural factors, family function, parenting style and family unit factors. We provide a section dedicated to patients with cognitive and developmental disability and include a nice flow chart highlighting the important stages of health care transition preparation. Furthermore, we discuss barriers for health care transition preparation and offer very practical solutions as well as activities for the preparation of healthcare transition. This table highlights common barriers at both the individual and family level and provides practical solutions to overcoming these barriers. In summary the ability of adolescents and young adults with chronic kidney disease to develop suitable self management skills is influenced by modifiable and non modifiable factors that we, as healthcare providers truly need to understand in order to personalize each patient's health care transition preparation, family structure and dynamics greatly influenced patients progress towards becoming self reliant young adults and understanding these interactions can enable us as providers to better support our patients as they move on from pediatric to adult focused services. I would like to thank our collaborators on this work and we wish to thank the patients and families for sharing their experiences with us as these have truly shaped our understanding and role in the health care transition journey. Thank you.
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