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Background and objectives The Edmonton Symptom Assessment System Revised: Renal is a patient-reported outcome measure used to assess physical and psychosocial symptom burden in patients treated with maintenance dialysis. Studies of patient-reported outcome measures suggest the need for deeper understanding of how to optimize their implementation and use. This study examines patient and provider perspectives of the implementation process and the influence of the Edmonton Symptom Assessment System Revised: Renal on symptom management, patient-provider communication, and interdisciplinary communication. Design, setting, participants, & measurements Eight in-facility hemodialysis programs in Ontario, Canada, assessed patients using the Edmonton Symptom Assessment System Revised: Renal every 4–6 weeks for 1 year. Screening and completion rates were tracked, and pre- and postimplementation surveys and midimplementation interviews were conducted with patients and providers. A chart audit was conducted 12 months postimplementation. Results In total, 1459 patients completed the Edmonton Symptom Assessment System Revised: Renal; 58% of eligible patients completed the preimplementation survey (n=718), and 56% of patients who completed the Edmonton Symptom Assessment System Revised: Renal at least once completed the postimplementation survey (n=569). Provider survey response rates were 71% (n=514) and 54% (n=319), respectively. Nine patients/caregivers from three sites and 48 providers from all sites participated in interviews. A total of 1207 charts were audited. Seven of eight sites had mean screening rates over 80%, suggesting that routine use of the Edmonton Symptom Assessment System Revised: Renal in clinical practice is feasible. However, the multiple data sources painted an inconsistent picture of the value and effect of the Edmonton Symptom Assessment System Revised: Renal. The Edmonton Symptom Assessment System Revised: Renal standardized symptom screening processes across providers and sites; improved patient and provider symptom awareness, particularly for psychosocial symptoms; and empowered patients to raise issues with providers. Yet, there was little, if any, statistically significant improvement in the metrics used to assess symptom management, patient-provider communication, and interdisciplinary communication. Conclusions The Edmonton Symptom Assessment System Revised: Renal patient-reported outcome measure may be useful to standardize symptom screening, enhance awareness of psychosocial symptoms among patients and providers, and empower patients rather than to reduce symptom burden.

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.To understand the current state of GN care in Ontario from nephrologist, hospital administrator, and patient and family perspectives.Cross-sectional.26 regional renal programs in Ontario.23 patients and family members living with GN who do not require renal replacement therapy.Patient and family member interviews as well as a survey of nephrologists.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.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).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.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.Malgré sa relative rareté, les glomérulonéphrites (GN) représentent 20 % des cas prévalents d’insuffisance rénale terminale en Ontario. Un diagnostic précoce et une prise en charge adéquate des GN pourraient réduire la morbidité pour les patients et les coûts pour le système de santé. Une analyse des besoins provinciaux (Ontario) en matière de soins des GN a été réalisée pour guider l’élaboration d’un cadre stratégique de gestion de la maladie.Connaître l’état actuel des soins en contexte de GN, en Ontario, du point de vue des néphrologues, des directions d’établissements, des patients et de leurs proches.Étude transversale.26 programmes régionaux de lutte contre la maladie rénale en Ontario.Un total de 23 individus, soit des patients atteints de GN, mais ne nécessitant pas de thérapie de remplacement rénal, et des membres de leur entourage.Des interviews de patients et de membres de leur entourage, ainsi qu’un sondage auprès de néphrologues.L’étude comportait trois volets: (1) interview des patients et de leur entourage; (2) sondage auprès des néphrologues; (3) entretiens avec les responsables des programmes régionaux de lutte contre la maladie rénale. Le Réseau rénal de l’Ontario a mis au point les questions du sondage et les questions relatives à l’évaluation des besoins après avoir consulté des néphrologues en pratique et des administrateurs d’hôpitaux. Les données recueillies ont été traitées par analyses thématiques (interviews) et par statistiques descriptives (sondage).L’interview des patients et de leur entourage (n = 23) a mis en évidence des lacunes dans les procédures liées au diagnostic et à l’aiguillage en néphrologie, de même que concernant l’éducation des patients, la prise de décisions et le soutien psychosocial. Le sondage des néphrologues (n = 74) a permis de déceler diverses lacunes contribuant à une prestation de soins non normalisée en Ontario, notamment vis-à-vis l’expertise provinciale dans la prestation de soins complexes en GN, l’accès aux médicaments, le soutien d’une équipe multidisciplinaire, l’éducation et le soutien psychosocial des patients. Les entretiens avec les responsables des programmes régionaux de lutte contre la maladie rénale (n = 11) concordaient avec les résultats des deux autres volets.Les interviews avec les patients et leur entourage ont été effectuées par une seule personne et restreintes à une vingtaine en raison de ressources limitées. Les néphrologues, patients et membres de leur entourage étaient tous anglophones et ont participé à l’étude sur une base volontaire, ce qui pourrait introduire un biais d’auto-sélection.L’évaluation des besoins provinciaux en matière de soins pour les GN a mis en lumière la nécessité d’élaborer et de mettre en œuvre une stratégie provinciale. Le cadre stratégique comprend quatre objectifs: (1) garantir aux patients le soutien nécessaire pour prendre des décisions éclairées, (2) établir un modèle de soins provincial, (3) exploiter les données pour permettre la planification, la prise de décision et le suivi des résultats, et (4) assurer un accès adéquat aux médicaments. Il s’agit de la première stratégie visant à combler les lacunes provinciales en matière de soins pour les GN en Ontario.

Supplemental material, GN_Assessment_-_Appendix for Provincial Needs Assessment to Determine the Current State of Glomerulonephritis Care in Ontario by Jocelyn Pang, Christina D’Antonio, Esti Heale, Philip Boll, Peter Blake, Jenna M. Evans and Michelle Hladunewich in Canadian Journal of Kidney Health and Disease

e12034 Background: Genetic testing for mutations in BRCA1 and BRCA2 has been clinically available in Ontario since 2000. It is estimated that over 15000 individuals have been tested. Evidence from clinical trials have consistently shown that women at high risk of breast cancer such as BRCA1/2 mutation carriers benefit from breast cancer screening that includes both magnetic resonance imaging (MRI) of the breast and mammography, yet access to MRI in Ontario was variable. In 2011, Cancer Care Ontario established an expert panel to develop a protocol for expanding the Ontario Breast Screening Program, initially created for average risk women 50-74, to include MRI and mammography for eligible high risk women. Methods: The panel’s tasks included: 1. determining the criteria for high risk, 2. estimating the prevalence of high risk women, 3. selecting a model to estimate cancer risk, 4. developing a referral and assessment pathway for potentially eligible subjects to receive genetic counseling/risk assessment and screening if eligible, 5. developing educational resources, training plan and communication strategy for relevant stakeholders including primary care providers, oncologists, geneticists and genetic counselors, 6. developing indicators to permit program evaluation, 7. providing guidance for post-implementation issues such as subject eligibility and interpretation of genetic test results. Results: The program was initiated July, 2011 at 19 sites. Women aged 30-69 with and without a history of breast cancer are eligible if they 1. are BRCA1/2 mutation carriers or untested first degree relatives of carriers, 2. have a lifetime risk of breast cancer >=25% based on family history, or 3. received prior radiation therapy to the chest. It is estimated that 34000 high risk women in the target age group live in Ontario. Conclusions: A population based organized screening program for high risk women that includes genetic risk assessment has been implemented in Ontario. To our knowledge, this is the first organized screening program for women at high risk of breast cancer.