725294
research-article20172017
CJKXXX10.1177/2054358117725294Canadian Journal of Kidney Health and DiseaseForzley et al
Journal canadien de la santé et de la maladie rénale
Original Research Article
A Survey of Canadian Nephrologists Assessing Prognostication in End-Stage Renal Disease
Canadian Journal of Kidney Health and Disease Volume 4: 1–9 © The Author(s) 2017 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav https://doi.org/10.1177/2054358117725294 DOI: 10.1177/2054358117725294 journals.sagepub.com/home/cjk
Brian Forzley1,2, Helen H. L. Chiu3, Ognjenka Djurdjev3, Rachel C. Carson1,4, Gaylene Hargrove1,4, Dan Martinusen4,5, and Mohamud Karim1,6
Abstract Background: Patients with end-stage renal disease (ESRD) frequently have a relatively poor prognosis with complex care needs that depend on prognosis. While many means of assessing prognosis are available, little is known about how Canadian nephrologists predict prognosis, whether they routinely share prognostic information with their patients, and how this information guides management. Objective: To guide improvements in the management of patients with ESRD, we aimed to better understand how Canadian nephrologists consider prognosis during routine care. Design and methods: A web-based multiple choice survey was designed, and administered to adult nephrologists in Canada through the e-mail list of the Canadian Society of Nephrology. The survey asked the respondents about their routine practice of estimating survival and the perceived importance of prognostic practices and tools in patients with ESRD. Descriptive statistics were used in analyzing the responses. Results: Less than half of the respondents indicated they always or often make an explicit attempt to estimate and/or discuss survival with ESRD patients not on dialysis, and 25% reported they do so always or often with patients on dialysis. Survival estimation is most frequently based on clinical gestalt. Respondents endorse a wide range of issues that may be influenced by prognosis, including advance care planning, transplant referral, choice of dialysis access, medication management, and consideration of conservative care. Limitations: This is a Canadian sample of self-reported behavior, which was not validated, and may be less generalizable to non-Canadian health care jurisdictions. Conclusions: In conclusion, prognostication of patients with ESRD is an important issue for nephrologists and impacts management in fairly sophisticated ways. Information sharing on prognosis may be suboptimal. Abrégé Contexte: En règle générale, le pronostic des patients atteints d’insuffisance rénale terminale (IRT) est plutôt sombre et implique des besoins complexes en matière de soins. Bien qu’il existe diverses approches, on en sait peu sur la façon dont les néphrologues canadiens s’y prennent réellement pour établir le pronostic de leurs patients, et on ignore, premièrement, si l’information pronostique est systématiquement communiquée au patient et deuxièmement, comment cette information oriente la prise en charge du patient. Objectifs de l’étude: Nous avons voulu mieux comprendre la manière dont les néphrologues canadiens tiennent compte du pronostic dans les soins aux patients afin d’éclairer les avancées dans la prise en charge des patients atteints d’IRT. Conception de l’étude et méthodologie: On a envoyé par courriel, un sondage Web à choix multiples à des néphrologues canadiens figurant sur la liste d’envoi de la Société canadienne de néphrologie. Le sondage interrogeait les répondants sur leur pratique habituelle d’évaluation de la durée de survie et sur leur perception de l’importance des outils et des pratiques pronostiques chez les patients atteints d’IRT. On a effectué une analyse statistique descriptive des réponses reçues. Résultats: Moins de la moitié des répondants a indiqué faire systématiquement ou souvent une tentative claire d’estimer la durée de survie ou d’en discuter avec le patient atteints d’IRT non dialysé, alors que seulement 25% le font dans le cas d’un
Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons AttributionNonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
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Canadian Journal of Kidney Health and Disease
patients dialysé. L’estimation de la durée de survie est le plus fréquemment basée sur une gestalt clinique. Les répondants rapportent un large éventail de questions pouvant être influencé par le pronostic, notamment la planification préalable des soins, la consultation en vue d’une transplantation, le choix de l’accès pour la dialyse, la gestion de la médication et la prise en considération d’un traitement conservateur. Limites de l’étude: Il s’agit d’un échantillon canadien non validé dont le comportement est autodéclaré et par conséquent, il pourrait ne pas correspondre à des systèmes de soins de santé à l’extérieur du Canada. Conclusions: L’établissement d’un pronostic chez les patients atteints d’IRT est un enjeu majeur dans la pratique des néphrologues canadiens et entraîne des répercussions relativement pointues sur la prise en charge du patient. La transmission de renseignements pronostiques pourrait ne pas être optimale. Keywords end-stage renal disease, chronic kidney disease, prognostication, dialysis, conservative care Received December 23, 2016. Accepted for publication June 22, 2017.
What was known before Patients with end-stage renal disease (ESRD) frequently have a poor prognosis, with a complex set of care needs that depend on prognosis. While there are tools to assess prognosis, little is known about whether Canadian nephrologists estimate the life span of these patients, whether the information is regularly shared with patients in clinical practice, and how it will be used to guide clinical management.
What this adds This pan-Canadian survey of nephrologists describes the diversity in practice of communicating and using prognostic information in the clinical care of kidney patients on and off dialysis. There may be a need to improve communications with patients to enable shared decision-making, and to improve on prognostic tools that will aid individual discussions and clinical management.
Introduction End-stage renal disease (ESRD) is an important health condition associated with high morbidity and mortality.1,2 In Canada, well over 5000 patients have initiated dialysis annually and 28% of those individuals are aged >75 years over the past decade.3 However, only 27% of patients in this age
group are alive 5 years after initiating dialysis, which reflects a survivorship comparable to amyotrophic lateral sclerosis,4 and stage III colon cancer.5 The relatively poor survival in this age bracket highlights the need for having conversations around goals of treatment in advance. Relatively little is known about prognosis conversations between nephrologists and patients with ESRD, including what patients want to know about prognosis. A small number of studies have reported that Canadians,6 including those living with ESRD7,8 want to receive honest prognostic information from their doctor even if the prognosis is poor. A systematic review on communicating prognosis in cancer care found that the majority of patients wanted to know their prognosis, and many wanted to be asked about their preferences for receiving prognostic information.9 The frequency of these conversations is not well reported, however, and is perceived to be inadequate.7,8,10 Reviews have proposed broad elements of good end-of-life care that include advance care planning, symptom-based medication prescribing, consideration of nondialytic management of ESRD,11 which are closely related to and dependent on the prognosis of individual patients. Optimal care for patients on dialysis depends on accurate prognostication. Patients with a poor expected survival or frail state are expected to benefit more from a palliative approach11 and may even be harmed by intensive medical and surgical procedures associated with renal replacement
1
Department of Medicine, Faculty of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada Interior Health Authority, Kelowna, British Columbia, Canada 3 BC Provincial Renal Agency, Vancouver, British Columbia, Canada 4 Island Health Authority, Victoria, British Columbia, Canada 5 Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada 6 Fraser Health Authority, Surrey, British Columbia, Canada 2
Corresponding Author: Brian Forzley, Department of Medicine, Faculty of Medicine, The University of British Columbia, 110-2504 Skaha Lake Road, Penticton, British Columbia, Canada V2A 6G1. Email: [email protected]
3
Forzley et al therapy.12,13 However, predicting prognosis is a complex activity. While some prognostic models focus exclusively on the use of clinical prognostic markers,14-16 more emerging models include a mix of clinical variables as well as variables related to lifestyle habit, functional status, and other nonclinical variables.17-22 Despite a growing body of literature on prognosis in ESRD, little is known about how often nephrologists explicitly prognosticate for their patients with ESRD, how they do this, and what they do with the prognostic information to guide the clinical management of their patients. In this study, we aimed to explore practice among Canadian nephrologists regarding estimation of prognosis and the use of prognostic information for the clinical management of adult patients with ESRD. A secondary objective was to assess face validity of a possible set of variables that may be used in prognosticating in patients with ESRD.
Methods A web-based survey was designed by a panel with nephrologists, methodologists, researchers, and administrators with expertise in risk prediction modeling and knowledge translation. The survey was pilot-tested with nephrologists in British Columbia, Canada, to ensure clarity of the questions and ease of completion. The final survey (Supplemental material) with minor modifications was administered to nephrologists in Canada via the e-mail list of the Canadian Society of Nephrology (CSN) over a 2-month period from February to April 2015. Two e-mail reminders were sent within the time period. All survey responses were anonymous.
Questionnaire Content We asked the respondents to provide general demographic information: age group, years of practice in nephrology, overall patient load per week, and an estimated number of conservatively managed patients in the last 6 months. A 20-item version of the questionnaire was administered to all nephrologist respondents. The survey was divided into 3 sections: (1) demographic information of our respondents; (2) questions pertaining to prognostication practice and utility for patients with glomerular filtration rate (GFR)
research-article20172017
CJKXXX10.1177/2054358117725294Canadian Journal of Kidney Health and DiseaseForzley et al
Journal canadien de la santé et de la maladie rénale
Original Research Article
A Survey of Canadian Nephrologists Assessing Prognostication in End-Stage Renal Disease
Canadian Journal of Kidney Health and Disease Volume 4: 1–9 © The Author(s) 2017 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav https://doi.org/10.1177/2054358117725294 DOI: 10.1177/2054358117725294 journals.sagepub.com/home/cjk
Brian Forzley1,2, Helen H. L. Chiu3, Ognjenka Djurdjev3, Rachel C. Carson1,4, Gaylene Hargrove1,4, Dan Martinusen4,5, and Mohamud Karim1,6
Abstract Background: Patients with end-stage renal disease (ESRD) frequently have a relatively poor prognosis with complex care needs that depend on prognosis. While many means of assessing prognosis are available, little is known about how Canadian nephrologists predict prognosis, whether they routinely share prognostic information with their patients, and how this information guides management. Objective: To guide improvements in the management of patients with ESRD, we aimed to better understand how Canadian nephrologists consider prognosis during routine care. Design and methods: A web-based multiple choice survey was designed, and administered to adult nephrologists in Canada through the e-mail list of the Canadian Society of Nephrology. The survey asked the respondents about their routine practice of estimating survival and the perceived importance of prognostic practices and tools in patients with ESRD. Descriptive statistics were used in analyzing the responses. Results: Less than half of the respondents indicated they always or often make an explicit attempt to estimate and/or discuss survival with ESRD patients not on dialysis, and 25% reported they do so always or often with patients on dialysis. Survival estimation is most frequently based on clinical gestalt. Respondents endorse a wide range of issues that may be influenced by prognosis, including advance care planning, transplant referral, choice of dialysis access, medication management, and consideration of conservative care. Limitations: This is a Canadian sample of self-reported behavior, which was not validated, and may be less generalizable to non-Canadian health care jurisdictions. Conclusions: In conclusion, prognostication of patients with ESRD is an important issue for nephrologists and impacts management in fairly sophisticated ways. Information sharing on prognosis may be suboptimal. Abrégé Contexte: En règle générale, le pronostic des patients atteints d’insuffisance rénale terminale (IRT) est plutôt sombre et implique des besoins complexes en matière de soins. Bien qu’il existe diverses approches, on en sait peu sur la façon dont les néphrologues canadiens s’y prennent réellement pour établir le pronostic de leurs patients, et on ignore, premièrement, si l’information pronostique est systématiquement communiquée au patient et deuxièmement, comment cette information oriente la prise en charge du patient. Objectifs de l’étude: Nous avons voulu mieux comprendre la manière dont les néphrologues canadiens tiennent compte du pronostic dans les soins aux patients afin d’éclairer les avancées dans la prise en charge des patients atteints d’IRT. Conception de l’étude et méthodologie: On a envoyé par courriel, un sondage Web à choix multiples à des néphrologues canadiens figurant sur la liste d’envoi de la Société canadienne de néphrologie. Le sondage interrogeait les répondants sur leur pratique habituelle d’évaluation de la durée de survie et sur leur perception de l’importance des outils et des pratiques pronostiques chez les patients atteints d’IRT. On a effectué une analyse statistique descriptive des réponses reçues. Résultats: Moins de la moitié des répondants a indiqué faire systématiquement ou souvent une tentative claire d’estimer la durée de survie ou d’en discuter avec le patient atteints d’IRT non dialysé, alors que seulement 25% le font dans le cas d’un
Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons AttributionNonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
2
Canadian Journal of Kidney Health and Disease
patients dialysé. L’estimation de la durée de survie est le plus fréquemment basée sur une gestalt clinique. Les répondants rapportent un large éventail de questions pouvant être influencé par le pronostic, notamment la planification préalable des soins, la consultation en vue d’une transplantation, le choix de l’accès pour la dialyse, la gestion de la médication et la prise en considération d’un traitement conservateur. Limites de l’étude: Il s’agit d’un échantillon canadien non validé dont le comportement est autodéclaré et par conséquent, il pourrait ne pas correspondre à des systèmes de soins de santé à l’extérieur du Canada. Conclusions: L’établissement d’un pronostic chez les patients atteints d’IRT est un enjeu majeur dans la pratique des néphrologues canadiens et entraîne des répercussions relativement pointues sur la prise en charge du patient. La transmission de renseignements pronostiques pourrait ne pas être optimale. Keywords end-stage renal disease, chronic kidney disease, prognostication, dialysis, conservative care Received December 23, 2016. Accepted for publication June 22, 2017.
What was known before Patients with end-stage renal disease (ESRD) frequently have a poor prognosis, with a complex set of care needs that depend on prognosis. While there are tools to assess prognosis, little is known about whether Canadian nephrologists estimate the life span of these patients, whether the information is regularly shared with patients in clinical practice, and how it will be used to guide clinical management.
What this adds This pan-Canadian survey of nephrologists describes the diversity in practice of communicating and using prognostic information in the clinical care of kidney patients on and off dialysis. There may be a need to improve communications with patients to enable shared decision-making, and to improve on prognostic tools that will aid individual discussions and clinical management.
Introduction End-stage renal disease (ESRD) is an important health condition associated with high morbidity and mortality.1,2 In Canada, well over 5000 patients have initiated dialysis annually and 28% of those individuals are aged >75 years over the past decade.3 However, only 27% of patients in this age
group are alive 5 years after initiating dialysis, which reflects a survivorship comparable to amyotrophic lateral sclerosis,4 and stage III colon cancer.5 The relatively poor survival in this age bracket highlights the need for having conversations around goals of treatment in advance. Relatively little is known about prognosis conversations between nephrologists and patients with ESRD, including what patients want to know about prognosis. A small number of studies have reported that Canadians,6 including those living with ESRD7,8 want to receive honest prognostic information from their doctor even if the prognosis is poor. A systematic review on communicating prognosis in cancer care found that the majority of patients wanted to know their prognosis, and many wanted to be asked about their preferences for receiving prognostic information.9 The frequency of these conversations is not well reported, however, and is perceived to be inadequate.7,8,10 Reviews have proposed broad elements of good end-of-life care that include advance care planning, symptom-based medication prescribing, consideration of nondialytic management of ESRD,11 which are closely related to and dependent on the prognosis of individual patients. Optimal care for patients on dialysis depends on accurate prognostication. Patients with a poor expected survival or frail state are expected to benefit more from a palliative approach11 and may even be harmed by intensive medical and surgical procedures associated with renal replacement
1
Department of Medicine, Faculty of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada Interior Health Authority, Kelowna, British Columbia, Canada 3 BC Provincial Renal Agency, Vancouver, British Columbia, Canada 4 Island Health Authority, Victoria, British Columbia, Canada 5 Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada 6 Fraser Health Authority, Surrey, British Columbia, Canada 2
Corresponding Author: Brian Forzley, Department of Medicine, Faculty of Medicine, The University of British Columbia, 110-2504 Skaha Lake Road, Penticton, British Columbia, Canada V2A 6G1. Email: [email protected]
3
Forzley et al therapy.12,13 However, predicting prognosis is a complex activity. While some prognostic models focus exclusively on the use of clinical prognostic markers,14-16 more emerging models include a mix of clinical variables as well as variables related to lifestyle habit, functional status, and other nonclinical variables.17-22 Despite a growing body of literature on prognosis in ESRD, little is known about how often nephrologists explicitly prognosticate for their patients with ESRD, how they do this, and what they do with the prognostic information to guide the clinical management of their patients. In this study, we aimed to explore practice among Canadian nephrologists regarding estimation of prognosis and the use of prognostic information for the clinical management of adult patients with ESRD. A secondary objective was to assess face validity of a possible set of variables that may be used in prognosticating in patients with ESRD.
Methods A web-based survey was designed by a panel with nephrologists, methodologists, researchers, and administrators with expertise in risk prediction modeling and knowledge translation. The survey was pilot-tested with nephrologists in British Columbia, Canada, to ensure clarity of the questions and ease of completion. The final survey (Supplemental material) with minor modifications was administered to nephrologists in Canada via the e-mail list of the Canadian Society of Nephrology (CSN) over a 2-month period from February to April 2015. Two e-mail reminders were sent within the time period. All survey responses were anonymous.
Questionnaire Content We asked the respondents to provide general demographic information: age group, years of practice in nephrology, overall patient load per week, and an estimated number of conservatively managed patients in the last 6 months. A 20-item version of the questionnaire was administered to all nephrologist respondents. The survey was divided into 3 sections: (1) demographic information of our respondents; (2) questions pertaining to prognostication practice and utility for patients with glomerular filtration rate (GFR)
