Clinical trial NCT05878171: Preference of Life-Sustaining Treatment Among Patients With End Stage Renal Disease
Official title: Preference of Life-Sustaining Treatment Among Patients With End Stage Renal Disease
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: End Stage Renal Disease
Keywords: Life-Sustaining Treatment,End Stage Renal Disease,Preference
Lead sponsor: National Taiwan University Hospital
Sponsor class: OTHER
Collaborators: name: National Taipei University of Nursing and Health Sciences
First posted: 2023-05-26
Enrollment: 200
Sex: ALL
Minimum age (years): 20
Standard ages: ADULT
OLDER_ADULT
Observational model: CASE_ONLY
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients diagnosed with chronic kidney disease stage V or end-stage renal disease, and glomerular filtration rate less than 15ml/min/1.73m2; or patients receiving regular blood or peritoneal dialysis treatment.

Brief summary: Although patients with kidney disease can rely on dialysis to prolong their lives, the complexity of the disease, the variability of the course of the disease, and the uncertainty of the prognosis often delay the discussion of issues at the end of life, and the deterioration of the condition often makes it impossible for the patient to express clearly or rationally. Treatment thoughts or preferences. Sufficient time is needed to think and discuss issues related to life treatment. Discuss with patients as soon as possible to help draw up end-of-life care plans, help patients realize end-of-life care preferences, assist family members to make complex treatment decisions, and alleviate medical providers' moral distress. Domestic life-sustaining treatment research is mostly signed by DNR for cancer patients and retrospective investigation of medical records, and seldom focuses on kidney disease patients and life-sustaining treatment survey preferences other than DNR content. This study sought to understand patients with kidney disease's preferences for life-sustaining care during disease progression, and to understand whether prognostic perceptions, symptom distress, dementia, and decision conflict affect patients' preferences. Pre-collected convenient sampling is expected to include 200 patients diagnosed with chronic kidney disease stage 5 or end-stage renal disease, including patients who have received regular dialysis. The survey will be conducted with a single questionnaire. There are five questionnaires, including: demographic characteristics, chronic kidney disease prognosis cognition And life-support treatment information questionnaire, short-form recall symptom assessment scale, loss of memory scale and decision-making conflict scale; after the researcher explains, the patient fills in by himself or the researcher fills in after the patient answers. It is expected that the results of the study will help clinical practitioners to understand the changes in the management of medical care for kidney disease patients when the disease worsens and assist in the management of patients' medical care, echoing the importance of advancing medical care planning in this population, for the future development of kidney disease A reference for care guidelines for debilitated patients, thereby improving care quality and satisfaction.


Eligibility criteria: Inclusion Criteria:

1. Over 20 years old.
2. Patients diagnosed with chronic kidney disease stage V or end-stage renal disease, and glomerular filtration rate less than 15ml/min/1.73m2; or patients receiving regular blood or peritoneal dialysis treatment.
3. Those who have normal cognitive function (such as: able to read newspapers and magazines, and communicate with others), and can communicate in Mandarin and Taiwanese.

Exclusion Criteria:

1. Severe cognitive impairment or visual or hearing impairment that makes it impossible to answer questions.
2. Critically ill patients.
3. Patients with chronic mental illness or their related diagnosis records.

Primary outcomes:
measure: Preference for end-of-life life-sustaining treatment for patients with end-stage renal disease
timeFrame: one year
measure: The influencing factors of life-sustaining treatment preference in patients with end-stage renal disease
timeFrame: one year
Secondary outcomes:
Other outcomes:
Locations:
city: Taipei
country: Taiwan
facility: National Taiwan University Hospital
city: Taipei
country: Taiwan
facility: National Taipei University of Nursing and Health Sciences
Study officials:
affiliation: National Taiwan University Hospital
name: Chan-Shiuan Kuo
role: PRINCIPAL_INVESTIGATOR
References:
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citation: O'Hare AM, Kurella Tamura M, Lavallee DC, Vig EK, Taylor JS, Hall YN, Katz R, Curtis JR, Engelberg RA. Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis: United States Renal Data System Study of Treatment Preferences (USTATE). JAMA Intern Med. 2019 Oct 1;179(10):1325-1333. doi: 10.1001/jamainternmed.2019.2879.
citation: Bernacki GM, Engelberg RA, Curtis JR, Kurella Tamura M, Brumback LC, Lavallee DC, Vig EK, O'Hare AM. Cardiopulmonary Resuscitation Preferences of People Receiving Dialysis. JAMA Netw Open. 2020 Aug 3;3(8):e2010398. doi: 10.1001/jamanetworkopen.2020.10398.
citation: Saeed F, Sardar MA, Davison SN, Murad H, Duberstein PR, Quill TE. Patients' perspectives on dialysis decision-making and end-of-life care . Clin Nephrol. 2019 May;91(5):294-300. doi: 10.5414/CN109608.
citation: Scherer JS, Milazzo KC, Hebert PL, Engelberg RA, Lavallee DC, Vig EK, Kurella Tamura M, Roberts G, Curtis JR, O'Hare AM. Association Between Self-reported Importance of Religious or Spiritual Beliefs and End-of-Life Care Preferences Among People Receiving Dialysis. JAMA Netw Open. 2021 Aug 2;4(8):e2119355. doi: 10.1001/jamanetworkopen.2021.19355.