Patient- and family-reported experience and outcome measures for elderly acute care patients: A knowledge synthesis

This project reviewed evidence about the use of self-report assessment questionnaires with patients and their families in acute care settings to assess, monitor and address their quality of life concerns and health care experiences.

Research Results

Findings: A total of 186 PREM and PROM instruments were found. Only three instruments that met the inclusion criteria were identified: Quality of Dying and Death (QODD), Canadian Health Care Evaluation Project Questionnaire (CANHELP) and Canadian Health Care Evaluation Project Questionnaire – shorter version (CANHELP LITE). Quality of each instrument was appraised using EMPRO, a standardized tool for evaluating the quality of self-report health instruments. The EMPRO overall score of the three instruments ranged from 11/100 to 71/100. The CANHELP and CANHELP LITE received the highest score (71) and the QODD had the lowest (11). Thus only one PREM (CANHELP/CANHELP LITE) and no PROMs with compelling evidence of validity to support their use in this population.

Impact of findings: Project reveals the urgent need for validation studies on PROMs and PREMs to ensure that the QOL concerns and healthcare experiences of seriously ill elderly patients, and their families, can be comprehensively assessed in research, quality improvement, and program evaluation. Although this project focused specifically on acute care, our initial search strategy was more general and revealed a large number of instruments relevant to seriously ill older adults in other contexts of care. There exists a significant opportunity to use the expansive information we have collected for a more general knowledge synthesis that is not limited to acute care. This would be significant given the widespread interest in using PROMs and PREMs in other contexts of health care (e.g., residential care, and homecare).

About the Project

The needs of seriously ill elderly patients hospitalized in acute care are complex. Comprehensive assessments of their perceived health outcomes, quality of life concerns and health care experiences are critical to the provision of high quality care that addresses the needs of patients and their families.

This project identified and evaluated questionnaires designed to measure patient/family-reported outcomes (PROMs) and patient/family-reported experiences (PREMs). The purpose was to produce a comparative evaluation of PROMs and PREMs designed to provide important information from the perspective of patients and their families in order for clinicians, administrators and decision makers to ensure that the needs and concerns of seriously ill elderly patients and their families are fully understood.

Project Team

Principal Investigator:

Richard Sawatzky, PhD, MSc, BSc, RN — Trinity Western University

Co-Investigators:

Stirling Bryan, PhD — University of British Columbia

Robin Cohen, PhD, MSc, BSc — McGill University/Jewish General Hospital

Duncan Dixon, MLIS, MEd, BA — Trinity Western University

Anne Gadermann, PhD — University of British Columbia/St. Paul’s Hospital

Kara Schick Makaroff, PhD, RN — University of Alberta

Kelli Stajduhar, PhD, MSN, BN, RN — University of Victoria

Knowledge Users and Partners:

Lena Cuthbertson, MEd, OT — B.C. Ministry of Health

Neil Hilliard, MD — Fraser Health Authority

Judy Lett, MSc, RN — Fraser Health Authority

Margaret McGregor, MHSc, MD — University of British Columbia, Family Practice

Della Roberts, MSN, RN — Fraser Health Authority

Carolyn Tayler, RN, BSN, MSN, MSA, CON(C) — Fraser Health Authority

Project Contact: Richard Sawatzky — rick.sawatzky@twu.ca

Presentations

Presentations

Chan, E., Sawatzky, R., Dixon, D., Wolfs, D., Gadermann, A., PROM-PREM Knowledge Synthesis Team. (October 2014). Bibliometric analysis of PROMs and PREMs for elderly patients in acute care. Paper presented at the 21st Annual Conference of the International Society for Quality of Life Research. Berlin, Germany.

Sawatzky, R., Chan, E., Dixon, D., Wolfs, D., Gadermann, A., Cohen, R., PROM-PREM Knowledge Synthesis Team. (September 2014). Patient- and family-reported outcome and experience measures for seriously ill elderly patients. Poster session presented at the 20th International Congress on Palliative Care. Montréal, QC.

Sawatzky, R. (September 2014). Patient and family reported experience and outcome measures for elderly acute care patients: Essential Building blocks for patient centered healthcare. Paper presented at the 2nd TVN Annual Conference and Scientific Meeting on Improving Care for the Frail Elderly, Toronto, ON.

Wolfs, D., Chan, E., Wang, S., Harding, W., Shearer, K., Sawatzky, R. (September 2014). Collaborative knowledge synthesis: How multiple perspectives shaped a project along the way. Poster session presented at the 2nd TVN Annual Conference and Scientific Meeting on Improving Care for the Frail Elderly, Toronto, ON.

Rationale, Objectives & Research Plan

Rationale: The imperative of patient- and family-centered care means that patients’ and family caregivers’ (FCGs) QOL concerns, as well as their experiences with healthcare, should be routinely and comprehensively assessed. Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are used to measure outcomes and experiences relevant to the quality of life (QOL) of patients and families, including their symptoms, functional status, and psychological, social, spiritual/existential wellbeing, as well as their experiences with health care services. These instruments provide important information about patients’ perspectives without prior interpretation by a clinician or any other person which is essential to understanding the needs of patients and whether healthcare services make a difference from their point of view.

Objectives: This project involved a knowledge synthesis with the aims to produce a comparative evaluation of PREMs and PROMs and provide recommendations to guide the selection and utilization of PREMs and PROMs for seriously ill frail elderly patients and their families in acute care settings.

Research Plan: (1) Identify and describe PROMs and PREMs recently developed or used (within the past 5 years) for research or practice in acute care settings for elderly patients and/or their family caregivers. (2) Focus on a subset of 88 generally applicable and multidimensional PROMs (covering both physical and mental health domains) and PREMs, with the goal to compare information about the administration (e.g., length of the instruments, reading level, mode(s) of administration, translations), applicability and use of these instruments with the elderly patients and their family caregivers in acute care settings. (3) Identify and evaluate the quality of the PROMs and PREMs with psychometric validation studies on elderly patients in acute care and/or their family caregivers.

Communication to Policy

Lay Title: Self-reported patient and caregiver experience may improve hospital care for seriously ill older adults

Key Findings:

We created an overview of characteristics of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) used for seriously ill elderly patients and their families in acute care settings.
We found that the validated instruments that pertained to elderly patients in acute care were the Canadian Health Care Evaluation Project Questionnaire (CANHELP and CANHELP LITE) and Quality of Dying and Death Questionnaire (QODD).

Why was this study needed?

Before this project, the reliability, validity, applicability and administration of many PROMs and PREMs used in the acute care settings had not been systematically reviewed and synthesized.
Up-to-date information of these instrument helps administrators and decision makers determine how to direct the selection and utilization of appropriate PROMs and PREMs

Suggestions on how administrators or policy maker could use the findings:

The CANHELP and CANHELP Lite instruments (both are PREMs) have compelling empirical evidence that support their use for seriously ill elderly patients and their families in the acute care setting.
The use of PROMs and PREMs improves patient-clinician communications. Therefore, we recommend using these instruments in clinical practice to improve the care of seriously ill older adults.

Brief comment on type of study in lay terms:

This knowledge synthesis project aimed to provide a comparative review of available patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) that would facilitate the selection and utilization appropriate measures for seriously ill elderly patients and their families in acute care settings.
Our study involved extensive searches and resulted in screening more than 2,000 articles and extracting data of 88 PROMs and PREMs to evaluate their psychometric properties.

Communication to Researchers

Lay Title: Self-reported patient and caregiver experience may improve hospital care for seriously ill older adults

Key Findings:

This project provides the overview of characteristics of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) used for the seriously ill elderly patients and their families in the acute care settings.
The instruments with a validation study pertaining to elderly patients in acute care include Canadian Health Care Evaluation Project Questionnaire (CANHELP and CANHELP LITE) and Quality of Dying and Death Questionnaire (QODD).
Psychometric properties evaluation showed that the overall score of CANHELP and CANHELP LITE (70.87) is higher than that of QODD (11.05).

Why was this study needed?

Before this project, the characteristics (i.e., reliability, validity, applicability and administration) of many patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) used in the acute care settings had not been systematically reviewed and synthesized.
Provided with the up-to-date information of these instrument, healthcare professional will know how to select and utilize the appropriate PROMs and PREMs in the patient care.

Brief overview of the methodology:

This knowledge synthesis project aimed to provide a comparative review of available patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) that would facilitate the selection and utilization appropriate measures for seriously ill elderly patients and their families in acute care settings.
This project involved extensive searches of 9 library databases, PROQOLID, review articles, books and websites to identify candidate instruments.
A total of 2,507 articles were initially screened, and 158 articles were selected to generate a preliminary list of 223 PROMs and PREMs.
Selected by Stage 1 selection criteria, 186 instruments were retained, of which 88 instruments were finally selected in Stage 2 for data extraction. In Stage 3, psychometric properties of the instruments with published psychometric validation were reviewed and evaluated.

Potential impact of findings on clinical practice/patient care and how this impact might be measured:

This project found that PREMs, CANHELP and CANHELP Lite instruments, have compelling empirical evidence to support their use in seriously ill elderly patients and their families in the acute care settings.
Using PROMs and PREMs can improve patient-clinician communications.
The project increased the knowledge base related to the characteristics of PROMs and PREMs used in the patient population. This should improve the application of PROMs and PREMs in clinical practice, and ultimately, the use of these instrument will contribute to better patient care.

Remaining knowledge/research gaps:

There is urgent need for validation studies focusing specifically on PROMs in seriously ill elderly population
It is not possible to develop a search strategy that would accurately determine the number of articles focused specifically on seriously ill elderly patients. In addition, the search for validation studies in Stage 3 were only based on precise search string of COSMIN, which may not include all relevant validation studies.

Webinars

CFN Webinar (July 8, 2015): Patient and family reported experience and outcome measures for elderly, acute care patients