Provincial Needs Assessment to Determine the Current State of Glomerulonephritis Care in Ontario

Abstract

Background: Despite its relative rarity, glomerulonephritis (GN) accounts for 20% of prevalent end-stage renal disease patients in Ontario. Early identification and appropriate management of GN to delay progression of disease can reduce patient morbidity and health system costs. As such, a provincial GN needs assessment was conducted to inform on the development of the provincial GN strategic framework in Ontario. Objective: To understand the current state of GN care in Ontario from nephrologist, hospital administrator, and patient and family perspectives. Design: Cross-sectional. Settings: 26 regional renal programs in Ontario. Patients: 23 patients and family members living with GN who do not require renal replacement therapy. Measurements: Patient and family member interviews as well as a survey of nephrologists. Methods: The study included 3 components: (1) interviews with patients and family members, (2) a survey of nephrologists, and (3) interviews with regional renal programs. The Ontario Renal Network provincial office developed the needs assessment questions and the physician survey questions after consultation with practicing nephrologists and hospital administrators. Thematic analysis was used to assess interview data and descriptive statistics to assess survey data. Results: Interviews with patients and family members (n = 23) identified gaps in care related to diagnosis and referral to nephrology care, education and decision-making, and psychosocial supports. The survey of nephrologists (n = 74) identified various issues that contribute to unstandardized GN care across Ontario, including a lack of provincial expertise in providing complex GN care, access to medication, multidisciplinary team support as well as patient education, and psychosocial supports. Interviews with regional renal programs aligned with interview and survey findings (n = 11). Limitations: Interviews with patients and family members were facilitated by 1 interviewer and limited to 20 interviews due to resource limitations. All nephrologists, patients, and family members who participated in the survey and interviews were volunteers and English-speaking, which may have resulted in self-selection bias. Conclusions: The provincial GN needs assessment emphasized the necessity to develop and implement a provincial GN strategy. The strategic framework includes 4 objectives: (1) ensure patients are supported to make informed decisions, (2) establish a provincial model of care, (3) leverage data to enable planning, decision-making, and monitoring of outcomes, and (4) ensure appropriate access to medication. This is the first Ontario strategy to address provincial gaps in GN care.

Knowledge Translation in Glomerulonephritis: Successes in Translational Research From the Bench to Bedside

“…People with GN recognize holistic care as being important—in Ontario, 84% of people with GN ranked access to specialized, multidisciplinary care as very important or important, while 81% ranked education, counseling and support for patients and families as being very important or important. 5 These findings informed the development of a government-sponsored program in Ontario, that includes 6 GN specialty clinics fully staffed by nurses, pharmacists, social workers, pathologists, and nephrologists. While specialized clinics can enhance the level of support available for people with GN, there remains a lack of research or guidelines in GN to inform interventions that directly target life participation, fatigue, or other priority PROs.…”

“…Challenges may occur at multiple stages in the care of patients living with GN, which may begin with delays in referral to nephrology, precipitating potential downstream consequences. 5 This was the case of our patient partner Kate who stated that there were some “hiccups” in her journey including being diagnosed quite late with IgAN at which point she had advanced chronic kidney disease (CKD). In a cross-sectional study from Ontario, 40% of patients living with GN reported delayed diagnosis and 45% were diagnosed after progression to advanced kidney disease nearing ESKD.…”

“…Furthermore, patients access to appropriate medication is also variable. 5 Kate, our patient partner, expressed that she was fortunate to have private insurance which paid for medications not covered by the government. However, cost of medications is a substantial barrier, as patients living with GN are frequently young and may not have drug coverage.…”

“…In a cross-sectional study from Ontario, 40% of patients living with GN reported delayed diagnosis and 45% were diagnosed after progression to advanced kidney disease nearing ESKD. 5 In particular, given the protean manifestations of GN, obtaining a diagnosis can be challenging, and the discovery of novel biomarkers or antibodies may serve as alternatives to kidney biopsy in some circumstances and may support the diagnosis of specific GNs such as membranous nephropathy.…”

Focused Jurisdictional Scan of Glomerulonephritis Medication Access in Canada: A Program Report

“…Stakeholder surveys previously conducted by ORN identified that both clinicians and patients do not perceive access to drugs to treat GN as comprehensive or timely. 17 To inform initiatives on improving access, ORN undertook a jurisdictional scan to examine current access, extent of public coverage, and timelines for public coverage in Canadian provinces for adults who are prescribed IS agents for GN.…”