Stakeholder Perspectives on Care Transition Needs of Patients on Hemodialysis Therapy

Purpose:  Rehospitalization rates among ESRD patients are twice that of the entire Medicare population and a third of those cases occur among young patients between 20 and 44 years of age.¹⁴The purpose of this study is to understand the factors associated with frequent and potentially avoidable hospitalizations within the hemodialysis patient population from the perspectives of patients and their family caregivers, as well as interdisciplinary healthcare providers from both outpatient and inpatient settings.

Methods:  We used an exploratory study design with mixed qualitative methods that included structured interviews with patients and caregivers, focus groups with health care providers, and research collaborations to maximize our understanding of factors associated with potentially avoidable hospitalizations among patients on hemodialysis. Patient demographic and clinical information was collected through chart review and a pre-interview oral survey including the Kidney Quality of Life and Palliative Outcome Scale-Renal Assessment^{15, 16} for patients, and Coleman’s Family Caregiver Tools¹⁷ to assess self-efficacy, caregiver burden, and engagement in care. Interviews were conducted with 20 patients and 10 family caregivers in a large, outpatient hemodialysis clinic. Multiple focus groups were held with four renal physicians, five registered nurses, a patient care technician and five health care professionals including social workers, nutritionists, and a nurse practitioner working in the hemodialysis outpatient setting. Descriptive and thematic analyses were conducted and preliminary findings were presented in a second round of focus groups with health care providers to clarify meaning and interpretation of multiple, and at times conflicting, participant perspectives.

Results: Caregivers reported high self-efficacy and involvement in caregiving. Health care providers identified socio-economic and community factors that contribute to poor patient outcomes, and identified organizational policies, procedures, and systems factors that may contribute to poor patient outcomes. Personal relationships between groups of patients, and between patients and staff, promote better patient outcomes, potential to enhance and leverage social aspect of hemodialysis care to improve outcomes. In addition, there may be potential for expansion of palliative and hospice care and expansion of integrated nutrition and sleep hygiene.

Conclusion:  The findings from this study and recommendations for expanded nursing care models can inform the development of a nurse-led transitional care and home visiting program^{18, 19} to support care transitions in the hemodialysis patient population.