A Pilot Study of A Guide to Conservative Care
Phase: NA
Conditions: End Stage Renal Disease, Decision Aid, Patient Engagement, Dialysis, End-of-life Care
Sponsor: University of Washington

 
 
 
 
 
 
 
 
 
A Pilot Study of A Guide to Conservative Care 
Funding Agency: National Palliative Care Research Center 
Principal Investigator: Susan P.Y. Wong, MD 
Date: February 23, 2021 
 
 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
 
Abstract 
Objective(s) and Hypotheses: 
Although dialysis is commonly regarded as a life-prolonging therapy for advanced chronic 
kidney disease (CKD), there is growing recognition that dialysis is not always beneficial. 
Conservative care is an important therapeutic alternative for patients who do not wish to 
pursue dialysis for their advanced CKD. This study aims to test the acceptability and 
feasibility of a novel decision aid), A Guide to Conservative Care, describing conservative 
care created by the principal investigator (PI, Wong). We hypothesize that this decision aid 
will be feasible and acceptable to older patients with advanced CKD and their close persons 
and will help to support informed and shared decision-making for treatment of advanced 
CKD.  
 
Research Design: 
This is a randomized pilot study of older patients with advanced CKD and their close persons 
who are receiving care at University of Washington (UW) Medicine and VA Puget Sound 
Health Care System (VAPS). The study utilizes qualitative interviews and standardized 
questionnaires to assess the feasibility and acceptability of the decision aid. We will also 
explore decisional conflict and goal concordant care in patients and close persons who 
receive the decision aid and those who do not.  
 
Methodology 
We will recruit 92 patients aged 75 years and older with advanced CKD as defined as an 
estimated glomerular filtration rate <25 ml/min/1.73m2 from UW Medicine and VAPS. We will 
ask patients to invite up to 1 close person as defined as a relative or friend who assists them 
with their medical care to also participate in the study. We will randomize patients and their 
close persons in a 1:1 fashion to either usual care or receipt of the decision aid. Participants 
will complete all study procedures by phone and over a total of three phone study visits. 
 
 
 
 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
List of Abbreviations 
CKD: chronic kidney disease 
UW: University of Washington, Seattle WA 
VAPS: VA Puget Sound Health Care System, Seattle WA 
KRI: Kidney Research Institute, University of Washington, Seattle WA 
VACOIN: VA Center of Innovation for Veteran-centered and Value-driven Care, Seattle WA.  

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
Contents 
Protocol Title:  A Pilot Study of A Guide to Conservative Care .................................................... 5 
1.0 
Study Personnel ................................................................................................................ 5 
2.0 
Introduction ........................................................................................................................ 5 
3.0 
Objectives .......................................................................................................................... 6 
4.0 
Resources and Personnel ................................................................................................. 6 
5.0 
Study Procedures .............................................................................................................. 7 
5.1 Study Design ......................................................................................................................... 7 
5.2 Recruitment Methods ............................................................................................................ 8 
5.3 Informed Consent Procedures .............................................................................................. 9 
5.4 Inclusion/Exclusion Criteria ................................................................................................... 9 
5.5 Randomization .................................................................................................................... 10 
5.6 Study Evaluations ............................................................................................................... 10 
5.7 Data Analysis ...................................................................................................................... 11 
5.8 Withdrawal of Subjects ....................................................................................................... 11 
6.0 
Reporting ......................................................................................................................... 12 
7.0 
Privacy and Confidentiality .............................................................................................. 12 
8.0 
Communication Plan ........................................................................................................ 12 
10.0 
References ...................................................................................................................... 13 
 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
 
Protocol Title:  A Pilot Study of A Guide to Conservative Care  
 
 
 
1.0 
Study Personnel 
Principal Investigator:  
Susan P. Y. Wong, M.D.  
Assistant Professor, Division of Nephrology, University of Washington 
Staff physician, VAPS (8/8ths) 
Investigator, KRI 
Core Investigator, VACOIN 
1660 S. Columbian Way, Renal Dialysis Unit 5B-113, Seattle WA 98108 
Email: Susan.Wong2@va.gov 
Phone: 206-277-4376 
Fax: 206-764-2022 
Effort: 25% 
 
Research Personnel 
Taryn Oestreich, M.P.H. 
Research Coordinator, KRI and VA Office of Geriatrics and Extended Care 
Phone: 425-286-4948 
 
Ernest Ayers, M.P.H. 
Study Coordinator, KRI  
Phone: 425-286-4948 
 
Rachel Smith 
Medical Transcriptionist, KRI and VACOIN 
Email: Rachel.Smith2@va.gov 
Phone: 206-554-9461 
Effort: 10% 
2.0 
Introduction 
 
Chronic kidney disease (CKD) afflicts 1 in 7 Americans. Although dialysis is commonly regarded 
as a life-prolonging therapy for advanced CKD, there is growing recognition that dialysis is not 
always beneficial. Decisions about dialysis often involve difficult trade-offs between the potential 
gains in longevity and symptom management and the burdens of treatment including the 
substantial time spent on dialysis, complications related to treatment, frequent interaction with 
healthcare system and loss of independence.  
 
Conservative care is an important option for patients who choose not to pursue dialysis that 
focuses on slowing the decline in renal function, active symptom management, advance care 
planning and the provision of appropriate palliative care. Observational studies suggest that for 
older adults (aged ≥75 years) with significant comorbidity and functional impairment, survival and 
quality of life may not differ appreciably between those treated with dialysis and those who 
pursue a more conservative approach for advanced CKD.  
 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
Few resources are available to help patients negotiate treatment decisions for their advanced 
CKD. Current decision aids focus primarily on of the benefits and harms of dialysis but include 
little or no information on conservative care. Thus, available decision aids miss critical content 
needed to support informed and shared decision-making for treatment of advanced CKD. In this 
context, it is not surprising that patients often feel that they have little choice but to start dialysis 
to avoid certain death, and most are unaware of alternatives to dialysis such as conservative 
care.  
 
The current application is to support a pilot study to test the acceptability and feasibility of a novel 
dedicated decision aid for conservative care created by the principal investigator (PI, Wong). 
This will be the first evidence-based decision aid for conservative care for the U.S. population 
that has the potential to be a cost-effective, time-saving and scalable intervention to improve the 
care of patients with advanced CKD.  
 
3.0 
Objectives 
We aim to conduct a randomized pilot study to test the feasibility and acceptability of a novel 
decision aid, A Guide to Conservative Care and explore preliminary outcomes, including 
decisional uncertainty and goal concordant care to inform a future clinical trial. We hypothesize 
that the decision aid will be feasible and acceptable to older patients and their family members.   
The specific aims of this research are to: 
1) Assess the feasibility and acceptability of a new educational handout called, A Guide to 
Conservative Care among older patients with advanced CKD and their close persons. 
2) Explore decisional uncertainty and healthcare goals of patients and close persons who receive 
the Guide and those who do not. 
4.0 
Resources and Personnel 
Study Sites:  
Study subjects will be recruited from the UW Medicine and VAPS in Seattle. Original study data 
collected with UW Medicine will be stored and at the KRI. Original study data collected at VAPS 
will be stored at the VACOIN. Deidentified UW patient data will be moved to VA Puget Sound in 
order to facilitate pooled analysis. All data analyses will occur at VACOIN. No VA data will be 
shared with the UW.  
 
Study Team Personnel 
Susan Wong, MD, Principal Investigator: She will provide overall project leadership and 
supervision of study performance and progress. She will oversee all aspects of the study subject 
recruitment and follow-up, data collection and management, analyzing and interpreting data, and 
preparing study findings for publication and presentation. She will have access to protected 
health information.   
 
Ernest Ayers, MPH, Study Coordinator: He will assist with project management and study 
coordination. He will not have access to protected health information. 
 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
Taryn Oestreich, MPH, Research Coordinator: She will assist with contacting and recruiting 
subjects, obtaining subject informed consent, administering the intervention and surveys, 
interviewing subjects, and collecting and analyzing study data. She will have access to protected 
health information.   
 
Other 
Rachel Smith, Medical Transcriptionist, BA: She will transcribe audio-recorded interviews 
collected for this study. The transcriptionist will have access to personal information that might be 
shared by the patient during interviews. He/she will not have access to protected health 
information.  
5.0 
Study Procedures 
 
5.1 Study Design 
We will conduct a randomized pilot study to test the feasibility and acceptability of a decision aid, 
A Guide to Conservative Care, among older patients with advanced kidney disease and their 
family members using interview methodology and questionnaires. We will also explore 
preliminary outcomes including decisional uncertainty and goal concordant care to inform a 
future clinical trial. We aim to enroll 92 patients with kidney disease and up to 92 of their close 
persons in this study. All study procedures will be completed over the phone. It will take a total of 
3 phone calls to complete all study procedures. Each phone call will take a total of 30 to 45 
minutes. 
For completing the study procedures, we will give participants a $20 gift card at the start of the 
study, a $10 gift card at 2-week follow up, and a $10 gift card at 3-month follow up. For those 
who are chosen at random to receive the Guide, we will give an additional $20 gift card for each 
interview that you complete: 2-week follow up and a 3-month follow up. 
The principal risk posed to study subjects is the potential loss of confidentiality. The proposed 
work requires the collection of protected health information to identify and recruit eligible subjects 
and contact and maintain follow up with participating subjects. We will also audio-record 
interviews with subjects during which personal information might be spoken.  
To minimize this risk, we have outlined steps below to safeguard patient confidentiality. These 
include restricting data analyses to only de-identified data files, keeping separate a crosswalk file 
linking study ID with personal identifiers and data analysis files, storage of data on password-
protected secure servers and key-locked filing cabinets accessible to only study team members 
who have completed training in the protection of human subjects, and the aggregation of study 
data for presentations and publications in order to conceal the subjects’ identities. 
With the measures outlined, we believe that the potential risks associated with the proposed 
work will be mitigated and will not outweigh the potential benefit to study subjects and the greater 
CKD population. The findings of this study will inform ongoing development of a novel decision 
aid to support informed and shared decision-making for patients with advanced CKD and their 
family members. For study subjects who know little or nothing about conservative care, reviewing 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
the decision aid as part of their participant in the study can be an educational experience for 
them. 
Anticipated Risk: This study is specifically designed to minimize risks to subjects. The potential 
risks or harms for subjects in this study include those that may result from invasion of privacy, 
breach of confidentiality, lost time, and stresses associated with each of these. A risk for patients 
with chronic kidney disease is that discussing their disease may cause them discomfort. 
Similarly, a risk for their close persons is that discussing a loved one’s kidney disease may cause 
them discomfort. To minimize stress and discomfort, participants will be able to decline to answer 
questions they wish and will be free to discontinue the interview at any time.  All participants will 
be reminded that they have the right to refuse to answer any questions and a right to withdraw 
from the study at any time. 
Potential Benefits: Patient and provider participants may benefit from this research directly and 
indirectly. This study will explicitly allow participants and their close persons the opportunity to 
describe their perspectives on treatment of advanced CKD, which may give participants an 
important outlet for describing their concerns and experiences. Participants may also gain 
satisfaction from participating in a research project designed to improve the quality of care for 
patients with CKD, which gives a sense that they are active contributors to research and 
medicine. 
 
5.2 Recruitment Methods 
Eligible patients will be identified by pre-screening the electronic medical records at UW 
Medicine and VAPS. We will mail a letter introducing the study (see Recruitment Materials). We 
will then follow up with a phone call about 1 week later to confirm that patients receive the letter 
and to determine if they are interested in learning more about the study. During this phone call, 
patients will be given the option of learning more about the study over the phone and/or receiving 
an information document describing the study in further detail that uses a similar format to a 
consent form. For patients who prefer to learn about the study by phone, we will provide them 
with a link to an online version of the study information document for them to review and 
download (https://redcap.link/kidney) while we read aloud the study information document. 
REDCap will NOT be used for the storage or analysis of any data. The only use of REDCap in 
this study is to use the provided link to disseminate an information sheet that does not require 
patients to enter any information.  
 
If patients are interested, we will obtain their informed verbal consent. For those who prefer to 
first review a mailed study information document before deciding whether to participate, we will 
follow-up by phone in about 1 week after mailing the study information document and obtain their 
informed verbal consent as appropriate. 
 
During the phone call in which consent is obtained, we will also ask patients to identify one close 
person to participate in this study. Patients who do not identify a close person are still eligible to 
participate in the study. For patients who do not wish to participate in the study, they may still 
identify a close person to participate in the study. We will obtain the mailing address and 
telephone number for the close person from patients and use this information to contact the 
close person. Recruitment procedures used with close persons will be similar to those detailed 
above for patients.  

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
 
We will not make more than 3 attempts to reach each patient and close person by phone after 
mailing the introductory letter, for a total of 4 possible attempts. 
 
5.3 Informed Consent Procedures 
 
Pre-screening 
We will request a waiver of consent and HIPAA authorization to access the electronic medical 
records of patients at each study site to identify eligible patients for this study and to obtain their 
name and contact information to contact eligible patients for recruitment purposes. The PI will 
pre-screen medical records. We will obtain names and contact information of close persons from 
patients. 
 
Study Evaluations 
We will mail all potential subjects a letter that introduces the study followed by a phone call 
document describing in detail the study aims, procedures, and potential risks and benefits. We 
will obtain verbal informed consent by phone. Subjects also have the option of requesting study 
information be mailed to them and to review and download this information from a website. 
 
To ensure informed consent, we will use a “teach-back” method in which, after reviewing the 
study, we will ask patients and close persons a series of true/false questions about key aspects 
of the study aims, procedures and potential risks and benefits (see Recruitment Materials). Any 
responses that are incorrect or incomplete will be reviewed with patients and close persons, and 
they will be asked for responses to missed statements for a second time. We will repeat this 
teach-back approach a second time if there are aspects of the study that are still not understood 
by patients and close person. Patients and close persons whose responses to statements are 
still incorrect after three responses would be considered to have inadequate understanding of the 
study and to be ineligible to participate. 
 
Patient participants will be informed that participation is fully voluntary and that their decision 
regarding participation will in no way affect their access to services or the quality of care they 
receive at their respective medical centers, and that their identifiable information will not, at any 
time, be linked to the digitally recorded interview or the subsequent transcript.  
 
5.4 Inclusion/Exclusion Criteria 
Inclusion criteria: 
 
Patients 
• 
Adults aged ≥75 years 
• 
Advanced CKD as defined as having at least 2 outpatient measures of eGFR <25 
ml/min/1.73m2 separated by >90 days in the prior year and with at least 1 of these 
measures eGFR <20 ml/min/1.73m2 
• 
English-speaking 
 
Close persons 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
• 
Adults aged ≥18 years 
• 
Assists patient with their kidney disease care 
• 
English-speaking 
 
Exclusion criteria: 
• 
Unable to complete the informed consent process 
 
5.5 Randomization 
Patients and their close person will be randomized together. We will use size 2 block 
randomization to assign patients to either: 1. The decision aid, or, 2. usual care (control). The 
study coordinator will be responsible for generating randomization codes using coin-toss.  
5.6 Study Evaluations 
The date of study enrollment will be the date that patient consent is obtained. Patients will be 
followed through patient’s death, date of study withdrawal or 3-months after study enrollment, 
whichever is earliest. 
 
Patients and close persons will each complete the following surveys and interviews at enrollment 
(T1), 2-week follow-up (T2) and 3-month follow-up (T3). All study procedures will be conducted 
by phone, and to maintain privacy, patients and close persons will complete procedures 
separately. After enrollment (T1), patients and close persons assigned to the intervention will be 
mailed A Guide to Conservative Care and will be given 2 weeks to review the Guide. The 
wording of surveys and interview guides will differ slightly to accommodate subjects who are 
patients and those who are close persons (see Study Materials). Patients who do not have a 
close person can still participate in the study and complete the following procedures. 
 
Demographic questionnaire: At T1, patients and close persons will be asked 11 questions about 
their demographic background, including sex, age, race, prior education, total annual household 
income, current employment status, self-rated overall health, whether they had previously heard 
of dialysis or conservative care and sources of this information, relationship to patient (if close 
person), and whether they are the patient’s surrogate decision-maker (if close person). This will 
take 3 to 5 minutes to complete. 
 
Healthcare goals: At T1, T2 and T3, we will ask patients about their preference for either 
extending life or preserving comfort. Patients will also have the option of indicating that they are 
uncertain about which they prefer. Close persons will be asked a similar question about what 
they perceive the patients’ healthcare goals are. This will take 1 to 3 minutes to complete. 
 
Guide questionnaire: At T2, patients and close persons assigned to the intervention will be asked 
to complete a 4-item questionnaire on their experience with reviewing the Guide. This will take 
10 to 15 minutes to complete. 
 
Decisional conflict: At T1, T2 and T3, patients will be asked to complete the 16-item Decisional 
Conflict Scale to assess their preference for dialysis vs. conservative care. Close persons will be 
asked a similar question about what they would prefer for the patients. This will take about 5 to 8 
minutes to complete. 
 
Post-intervention interview: At T2, patients and close persons assigned to the intervention will be 
invited to answer 4 open-ended questions on the usability of the decision aid. Interviews will be 

 
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Principal Investigator: Susan P.Y. Wong, MD MS 
audio-recorded then transcribed. We estimate that an interview will take 20 to 30 minutes to 
complete. 
 
Late-intervention interview: At T3, patients and close persons assigned to the intervention will 
undergo a semi-structured interview to inquire how the decision aid prompted discussion of 
conservative care with others and their healthcare providers and the outcomes of those 
interactions. Interviews will take 20 to 30 minutes to complete and will be audio-recorded then 
transcribed. 
Treatment status: At T3, we will ascertain whether patients had died, started dialysis and 
enrolled in hospice. 
 
5.7 Data Analysis 
Feasibility and acceptability: As our primary aim, we will estimate the association of the 
intervention by the difference in patient-reported discussion of conservative care with their 
healthcare providers at T3. Based on prior work, the rate of patient-reported discussion of 
conservative care with their health care providers in usual care settings is approximately 29%. 
The target sample size (n=92) is estimated to provide 80% power (two tailed, a=0.05) to detect 
an absolute difference of 30% or more in rates of patient-provider discussion of conservative 
care between the intervention and control groups.  
As part of our analysis of feasibility and acceptability, we will also calculate point 
estimates of completion rates and attrition rates and their 95% confidence intervals at T2 and 
T3.We will further assess user experience of the decision aid by performing a content analysis 
(an unstructured method of inquiry that facilitates discovery of previously unidentified factors 
pertaining to a phenomenon) of post-intervention interviews, coding for themes elucidating pros, 
cons and other considerations with using the decision aid to facilitate decision-making regarding 
conservative care with their healthcare providers. 
 
Exploratory outcomes: We will assess change in knowledge on conservative care and 
confidence in making treatment decisions about conservative care (i.e., T3-T1 and T2-T1) based 
on scores on the Decisional Conflict Scale. To assess for goal concordant treatment decisions, 
we will measure the distribution of patients who rank life extension or comfort as their highest 
priority according to those who indicate on the Decisional Conflict Scale at T1, T2 and T3 that 
they opt for conservative care vs. dialysis. We will perform a content analysis of late-intervention 
interviews to ascertain detailed information about whether the decision aid prompted discussions 
on conservative care between patients, their close persons and providers, and code for themes 
reflecting actions taken by others and providers to subjects’ interests and concerns regarding 
conservative care. 
 
5.8 Withdrawal of Subjects 
Subjects will be informed during the consent process and at each study phone visit that they can 
choose to withdraw from the study at any point in time.  
There are no anticipated circumstances under which subjects will be withdrawn from the 
research without their consent. There are no anticipated consequences of a subject's decision to 

 
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A Pilot Study of A Guide to Conservative Care 
Principal Investigator: Susan P.Y. Wong, MD MS 
withdraw from the research. During data collection, study interviewers will assure participants 
that they can, at any time during the interview, refuse to answer any questions asked of them 
and may at any time elect to withdraw from the study. If a participant elects to withdraw during 
the phone call, the interviewer will immediately end the interview or questionnaires. 
6.0 
Reporting 
We do not anticipate any adverse events that might occur. However, any and all unanticipated 
problems, serious adverse events and protocol deviations will be recorded and reported 
immediately to the study Principal Investigator. Any serious adverse events and/or serious 
problems will be reported to the IRB within 5 business days. Additionally, the ISO and Privacy 
Officer will be notified within one hour of any improper use or disclosure of study data. The 
Principal Investigator will be the monitoring entity responsible for ensuring that all measures 
related to data security and protection of subject privacy and confidentiality are being followed. 
Subjects will be informed to contact the PI for all urgent and non-urgent questions and concerns 
at the following: Susan Wong, Phone: 206-277-4376. 
7.0 
Privacy and Confidentiality 
The proposed work will use protected health information. All study personnel who will have 
access to protected health information and/or will be involved in obtaining subject consent will be 
required to complete all necessary training in the protection of human subjects and privacy 
through the CITI Program and VA Learning University Talent Management System. All study 
personnel who have access to study and patient data have been approved by both the UW and 
VAPS. 
All subjects will be given a unique study ID, and data collected for this study will be associated 
with study IDs only. A separate crosswalk file linking study IDs with personal identifiers will be 
kept in separate from data analysis files. Data analysis files will not contain personal identifiers.  
All interviews will be transcribed and purged of any personal identifiers by the transcriptionist. 
Data analysis will be conducted using only the de-identified transcripts. Patient responses during 
interviews will also be kept confidential from their providers and close persons. Likewise, 
information shared by close persons will not be shared with patients.  
Study data will be aggregated for presentations or publications related to the study in order to 
conceal the identities of subjects. 
8.0 
Communication Plan 
The Head of the Division of Nephrology at each medical center will be notified of any adverse 
events or changes to the study protocol.  
 
9.0      Information Security and Data Storage/Movement 

 
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Principal Investigator: Susan P.Y. Wong, MD MS 
UW patient data, including recruitment information, audio-recordings of interviews, interview 
transcripts, patient tracking information, and survey responses will be stored at the KRI in secure 
study folders. After recruitment and data collection, deidentified UW patient data will be moved to 
VAPS for final pooled analysis. All analysis will take place at VAPS.  
 
The data flow for UW data is:  
UW patient > VA and UW approved staff > UW servers > deidentified data into VA servers.  
 
VA patient data, including recruitment information, audio-recordings of interviews, interview 
transcripts, patient tracking information, and survey responses, will be stored at VAPS in a 
secure J-drive study folder. No VA patient data will be shared with the UW, and all analysis will 
take place at VAPS.  
 
The data flow for VA data is: 
VA patient > VA and UW approved staff > VA servers 
 
For both UW and VA data, interviews will be digitally audio-recorded and downloaded from 
recording devices to secure study folders using a USB fire cable. After audio-recordings have 
been saved, audio files will be erased from audio-recorders. Audio files of interviews will be 
labeled with study IDs and date of the interview only and will be accessible to the transcriptionist 
through the secure study folder. Transcripts of audio files will be saved as Microsoft Word format 
directly to secure study folders. The transcriptionist will not be permitted to save copies of audio 
files or transcripts onto personal computers or devices.  
 
Survey study data will be assembled using structured forms designed in Microsoft Excel and 
saved in secure study folders. Data will be associated with study IDs only.  
 
After deidentified UW data is moved to VAPS, all data collected at UW Medicine and VAPS will 
be stored on VACOIN access-protected servers on the J: drive. No VA data will be shared with 
the UW.  
 
All research records, including the investigator’s research records, must be retained until 
disposition instructions are approved by the National Archives and Records Administration 
(NARA) and are published in VHA's Records Control Schedule (RCS 10-1). (VHA Handbook 
1200.05).  
 
After all data are analyzed and manuscripts summarizing study findings are published (estimated 
2029), all identifiable and crosswalk files will be destroyed. 
10.0 References 
1. USRDS. Annual Data Report, Atlas of Chronic Kidney Disease in the United States. Bethesda, 
Md.: National Institutes of Health, National Institutes of Diabetes and Digestive and Kidney 
Diseases; 2017. 
2. Montez-Rath ME, Zheng Y, Tamura MK, Grubbs V, Winkelmayer WC, Chang TI. 
Hospitalizations and Nursing Facility Stays During the Transition from CKD to ESRD on Dialysis: 
An Observational Study. J Gen Intern Med 2017;32:1220-7. 

 
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Principal Investigator: Susan P.Y. Wong, MD MS 
3. Wong SP, Kreuter W, O'Hare AM. Healthcare intensity at initiation of chronic dialysis among 
older adults. J Am Soc Nephrol 2014;25:143-9. 
4. Purnell TS, Auguste P, Crews DC, et al. Comparison of life participation activities among 
adults treated by hemodialysis, peritoneal dialysis, and kidney transplantation: a systematic 
review. Am J Kidney Dis 2013;62:953-73. 
5. Jassal SV, Chiu E, Hladunewich M. Loss of independence in patients starting dialysis at 80 
years of age or older. New England Journal of Medicine 2009;361:1612-3. 
6. Kurella Tamura M, Covinsky KE, Chertow GM, Yaffe K, Landefeld CS, McCulloch CE. 
Functional status of elderly adults before and after initiation of dialysis. N Engl J Med 
2009;361:1539-47. 
7. Kidney Disease: Improving Global O. KDIGO 2012 Clinical Practice Guidelines for the 
Evaluation and Management of Chronic Kidney Disease. Kidney Int 2012;3. 
8. Murtagh FE, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE. Dialysis or not? A 
comparative survival study of patients over 75 years with chronic kidney disease stage 5. 
Nephrol Dial Transplant 2007;22:1955-62. 
9. Smith C, Da Silva-Gane M, Chandna S, Warwicker P, Greenwood R, Farrington K. Choosing 
not to dialyse: evaluation of planned non-dialytic management in a cohort of patients with end-
stage renal failure. Nephron Clin Pract 2003;95:c40-6. 
10. Chandna SM, Da Silva-Gane M, Marshall C, Warwicker P, Greenwood RN, Farrington K. 
Survival of elderly patients with stage 5 CKD: comparison of conservative management and 
renal replacement therapy. Nephrol Dial Transplant 2011;26:1608-14. 
11. Verberne WR, Geers AB, Jellema WT, Vincent HH, van Delden JJ, Bos WJ. Comparative 
Survival among Older Adults with Advanced Kidney Disease Managed Conservatively Versus 
with Dialysis. Clin J Am Soc Nephrol 2016;11:633-40. 
12. Shum CK, Tam KF, Chak WL, Chan TC, Mak YF, Chau KF. Outcomes in older adults with 
stage 5 chronic kidney disease: comparison of peritoneal dialysis and conservative 
management. J Gerontol A Biol Sci Med Sci 2014;69:308-14. 
13. Rouveure AC, Bonnefoy M, Laville M. [Conservative treatment, hemodialysis or peritoneal 
dialysis for elderly patients: The choice of treatment does not influence the survival]. Nephrol 
Ther 2016;12:32-7. 
14. Da Silva-Gane M, Wellsted D, Greenshields H, Norton S, Chandna SM, Farrington K. Quality 
of life and survival in patients with advanced kidney failure managed conservatively or by 
dialysis. Clin J Am Soc Nephrol 2012;7:2002-9. 
15. Yong DS, Kwok AO, Wong DM, Suen MH, Chen WT, Tse DM. Symptom burden and quality 
of life in end-stage renal disease: a study of 179 patients on dialysis and palliative care. Palliat 
Med 2009;23:111-9. 

 
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16. Seow YY, Cheung YB, Qu LM, Yee AC. Trajectory of quality of life for poor prognosis stage 
5D chronic kidney disease with and without dialysis. Am J Nephrol 2013;37:231-8. 
17. Davis JL, Davison SN. Hard choices, better outcomes: a review of shared decision-making 
and patient decision aids around dialysis initiation and conservative kidney management. Curr 
Opin Nephrol Hypertens 2017;26:205-13. 
18. Hussain JA, Flemming K, Murtagh FE, Johnson MJ. Patient and health care professional 
decision-making to commence and withdraw from renal dialysis: a systematic review of 
qualitative research. Clin J Am Soc Nephrol 2015;10:1201-15. 
19. Song MK, Lin FC, Gilet CA, Arnold RM, Bridgman JC, Ward SE. Patient perspectives on 
informed decision-making surrounding dialysis initiation. Nephrol Dial Transplant 2013;28:2815-
23.