Patients’, Family Caregivers’ and Clinicians’ Perspectives on ‘What Matters Most’ in the Management of End-stage Kidney Disease

Nursing; Health Communication

A mixed-methods project to describe patient, family and clinicians’ perspectives on the most pressing palliative care needs in ESKD; This will inform the development of targeted interventions.

Design: descriptive study employing both quantitative andqualitative methods.

To capture patient and family caregiver perspectives, wewill recruit patients with ESKD (either on dialysis  or conservative management) and their familycaregivers from the out-patient setting. Semi-structured interviews (in-person orover the telephone, depending on participant preference) will beaudio-recorded, transcribed, and analyzed using qualitative content analysis. Questiondomains will include: patient and caregiver experience with ESKD, perceptionson the most pressing needs, symptom burden, quality of life, understanding ofprognosis, treatment-related decision making, understanding of palliative care,perspectives on what role, if any palliative care should have in management ofESKD.

To capture clinicians’ perspectives on the most pressingneeds of patients with ESKD and the main barriers to providing comprehensive,patient and family-centered care to this population, we will administer surveysand conduct focus groups with clinicians in nephrology and palliative care. Focusgroups will be recorded, transcribed and analyzed using qualitative contentanalysis.

To capture the trajectory and health care system utilizationof patients with ESKD we will extract de-identified data (including number andlength of hospitalizations, reasons for admission, presence of advance directives,number of referrals to palliative care and hospice, discharge disposition, ICUadmissions etc.), from the electronic health record of the patients with ESKD.


Desired outcomes

Desired outcomes include: a deeper understanding of 1) patients with ESKD and their family caregivers' experiences and perspectives on the role of palliative care in the management of ESKD; 2) clinicians' perspectives on barriers to providing comprehensive, patient/family-centered care to patients with ESKD and their family caregivers; 3) the trajectory and health care utilization of patients with ESKD at or near end-of-life (presence of advance directives, referrals to hospice and/or palliative care, symptom burden, reasons for hospitalization, number of hospital days, discharge disposition etc.).

This descriptive information will be used to inform the development of theoretically-driven interventions designed to target the most pressing palliative care needs of this population. Extramural funding will be sought for intervention development and testing.