Who’s the quarterback to care: Identifying challenges to person-centered integrated kidney care

Background: People living with chronic kidney disease (CKD) often have multiple chronic health conditions commonly disproportionately affecting the most vulnerable. It requires patients to interact with nephrologists and non-nephrologist health care providers (HCPs). As a result, they can experience fragmented care, systemic barriers, and inequitable access to services which can negatively impact patients and healthcare outcomes.

A person-centered integrated care (PC-IC) approach can enhance care to delay progression of kidney disease and empower people to take charge of their health by providing collaborative, coordinated, accessible, and individualized care. However, little research has explored how patients, caregivers, and HCPs perceive the delivery of PC-IC using a theory informed approach. With the ultimate goal of developing an enhanced model of PC-IC across specialty and community settings, we sought to understand the current challenges in PC-IC experienced by these groups and identify their top ten priorities.

 

Approach: Our research team assembles a diverse representation of individuals who vary in age, gender, ethnicity, and geography, including two patient partners who have lived experience with CKD and comorbidities (a patient and a caregiver). We conducted a qualitative descriptive study interviewing individuals including adults living with CKD, caregivers, HCPs, and decision-makers in Alberta, Canada to explore their experiences with PC-IC. Using content analysis we identify how participants conceptualize PC-IC and current challenges.

 

Based on these findings we created 31 PC-IC challenge statements which were validated and prioritized by individuals representing the four participant groups using a modified Delphi method (3 rounds) to arrive at the top 10 challenges. The Rainbow Model of Integrated Care (RMIC) framework guided the development of the interview guide and data analysis. We also used the RMIC to synthesize the challenges identified, specifically looking at challenges at the micro-, meso-, and macro-levels of care.

 

Results: We interviewed thirty participants including 11 patients, 2 caregivers, 15 HCPs, and 2 decision-makers. All participant groups reported that it is unclear who is responsible for coordinating their care. At the micro-level patients found interpersonal relationships with their HCP to be critical to establishing person-centered care (e.g., trust, consistent provider, shared decision-making). At the meso-level, participants found communication and coordination were demonstrated within a clinic; however, care was disconnected between clinical settings (e.g., lack of coordination, unclear responsibilities). These were impacted by macro-level challenges, including fragmented communication (e.g., electronic medical records, referral systems) and the influence of funding models.

 

Thirty participants (12 patients, 4 caregivers, 14 HCPs) completed the 3 modified Delphi rounds with the top 10 challenge statements reflecting all levels of care (3 macro, 4 meso, 3 micro). HCPs identified more macro-level challenges and patients/caregivers prioritized more micro-level challenges.

 

Implications: PC-IC interventions have been derived from clinician experience, literature, and system level drivers, resulting in a mismatch of PC-IC challenges between patients, health care providers, and decision makers. Our findings highlight the importance of understanding the diverse perspectives regarding PC-IC challenges and will inform future work in enhancing PC-IC for people living with CKD by placing greater attention on addressing these key areas.