Palliative Care Quality Indicators for Patients with End-Stage Liver Disease Due to Cirrhosis

Abstract

Background and Aims

There are guidelines for the medical management of cirrhosis and associated quality indicators (QIs), but QIs focusing on standards for palliative aspects of care are needed.

Methods

We convened a 9-member, multidisciplinary expert panel and used RAND/UCLA modified Delphi methods to develop palliative care quality indicators for patients with cirrhosis. Experts were provided with a report based on a systematic review of the literature that contained evidence concerning the proposed candidate QIs. Panelists rated QIs prior to a planned meeting using a standard 9-point RAND appropriateness scale. These ratings guided discussion during a day-long phone conference meeting, and final ratings were then provided by panel members. Final QI scores were computed and QIs with a final median score of greater than or equal to 7, and no disagreement was included in the final set.

Results

Among 28 candidate QIs, the panel rated 19 as valid measures of quality care. These 19 quality indicators cover care related to information and care planning (13) and supportive care (6).

Conclusions

These QIs are evidence-based process measures of care that may be useful to improve the quality of palliative care. Research is needed to better understand the quality of palliative care provided to patients with cirrhosis.

Appendix

End-stage liver disease—search methodology

Database searched and time period covered:

PubMed—1990-3/22/2012

Language:

English

Search strategy;

End-stage liver disease OR (cirrhosis AND (child AND c))

AND

“dying loved one” OR “dying patient” OR “dying patients” OR “dying people” OR “dying person” OR “last year of life” OR “end of life” OR “end-of-life” OR “terminal illness” OR “terminal illnesses” OR terminal care OR “limited life expectancies” OR “limited life expectancy” OR “limited life span” OR “limited lifespan” OR “limited life spans” OR terminally ill OR critical illness OR frail elderly OR palliative OR hospice OR “advance care” OR advance directive* OR surrogate decision maker* OR surrogate decision-maker* OR caregiver* OR care giver* OR “care giving” OR diet* OR nutrition* OR supportive medication* OR hepatorenal syndrome AND dialysis) OR “mechanical ventilation” OR pain OR esophageal varices OR constipat* OR ascites OR bone OR bones OR fatigue OR pruritis OR gonadal dysfunction OR dyspnea OR tylenol OR nsaids OR sorafenib

Number of results: 1776

Database searched and time period covered:

PubMed—1/1/2012–12/14/2012

Language:

English

Search strategy:

End-stage liver disease OR (cirrhosis AND (child AND c))

AND

“dying loved one” OR “dying patient” OR “dying patients” OR “dying people” OR “dying person” OR “last year of life” OR “end of life” OR “end-of-life” OR “terminal illness” OR “terminal illnesses” OR terminal care OR “limited life expectancies” OR “limited life expectancy” OR “limited life span” OR “limited lifespan” OR “limited life spans” OR terminally ill OR critical illness OR frail elderly OR palliative OR palliat* OR hospice OR “advance care” OR advance directive* OR surrogate decision maker* OR surrogate decision-maker* OR caregiver* OR care giver* OR “care giving” OR diet OR dietary OR nutrition* OR supportive medication* OR (hepatorenal syndrome AND dialysis) OR “mechanical ventilation” OR pain OR esophageal varices OR constipat* OR ascites OR bone OR bones OR fatigue OR pruritis OR gonadal dysfunction OR dyspnea OR tylenol OR nsaids OR sorafenib

Number of results: 213

Database searched and time period covered:

Cochrane databases—1/1/2012–12/14/2012

Language:

English

Search strategy:

‘End-Stage Liver Disease OR (cirrhosis AND (child AND c)) in title abstract keywords

AND

dying loved one” OR dying patient OR dying patients” OR “dying people OR dying person OR last year of life OR end of life OR end-of-life OR terminal illness OR terminal illnesses OR terminal care OR limited life expectancies OR limited life expectancy OR limited life span OR limited lifespan OR limited life spans OR terminally ill OR critical illness OR frail elderly OR palliative OR palliat* OR hospice OR advance care OR advance directive* OR surrogate decision maker* OR surrogate decision-maker* OR caregiver* OR care giver* OR care giving OR diet OR dietary OR nutrition* OR supportive medication* OR (hepatorenal syndrome AND dialysis) OR mechanical ventilation OR pain OR esophageal varices OR constipat* OR ascites OR bone OR bones OR fatigue OR pruritis OR gonadal dysfunction OR dyspnea OR tylenol OR nsaids OR sorafenib

Number of results: 2

Cochrane reviews (2)

Other reviews (0)

Trials (2)

Methods studies (0)

Technology assessments (0)

Economic evaluations (0)

Cochrane groups (0)

After removing duplicates:

1888 is the final after removing all duplicates

144 after title search

82 after abstract search

Database searched and time period covered:

National guidelines clearinghouse—1/1/1997–12/14/2012

Language:

English

Search strategy #1:

Keyword: liver

IOM care need: end-of-life care

Number of results: 41

Search strategy #2:

Keyword: cirrhosis

Age of target population: exclude infant (1–23 months), child (2–12 years), adolescent (13–18 years)

Number of results: 38

No Palliative care guidelines for cirrhosis, General Palliative care guidelines for pain management (1) and for all life-limiting illnesses (2)

Database searched and time period covered:

CareSearch—all years

Search strategy:

Liver

Number of results: 25

One report for homeless, one report for pain management in liver disease, and fast fact #189 for prognosis in cirrhosis