The National Palliative Care Research Center

Without research, palliative care is an art, not a science.

Measurement and Evaluation Tools

Pain and Symptom Management

Under each of the sections below is a selection of measurement and evaluation tools for conducting palliative care research. Many of these tools are copyrighted and professionals should site sources and register, if applicable, when using the material.

The following is a selection of tools for assessing pain and assessing and tracking the level of symptoms (some are patient reported).

Brief Pain Inventory (long form)
A pain assessment tool for use with cancer patients. Provides information on the intensity of pain (the sensory dimension) as well as the degree to which pain interferes with function (the reactive dimension).

Brief Pain Inventory (short form)

Brief Fatigue Inventory
A tool to rapidly assess the severity and impact of cancer-related fatigue.

Edmonton Symptom Assessment Scale (ESAS)
This tool is a nine-item patient-rated symptom visual analogue scale developed for use in assessing the symptoms of patients receiving palliative care.

McGill Pain Inventory- Short Form
A questionnaire incorporating a series of adjectives to describe the characteristics and intensity of pain.

Memorial Symptom Assessment Scale (MSAS)
A scale used to assess 32 physical and psychological symptoms in three different dimensions: intensity, frequency, and distress.

Memorial Symptom Assessment Scale - Short Form (MSAS-SF)
The MSAS-SF is an abbreviated version of the Memorial Symptom Assessment Scale, measuring 32 symptoms with one dimension.

Condensed Memorial Symptom Assessment Scale (CMSAS)
The CMSAS is a condensed verison of the Memorial Symptom Assessment Scale, measuring 14 symptoms with one dimension.

Needs at the End-of-life Screening Tool (NEST) 
NEST is a comprehensive assessment and outcome measures instrument.

Palliative Care Outcome Scale (POS)
A 10-item scale (plus an open question) that was specifically developed and validated for palliative care and covers physical symptoms, patient and family or caregiver anxiety/fears and well being.  Please register to access this tool.

Wong-Baker FACES Pain Rating Scale
A visual analog scale to assess pain in pediatric patients. For permission to use the rating scale, please complete the author's online request form.

Functional Status

Functional status is an individual's ability to perform normal daily activities required to meet basic needs, fulfill usual roles, and maintain health and well-being. Decline in functional status is measured by an individual's loss of independence in activities of daily living (ADLs) over a period of time.

The following is a selection of tools that can be used to rate the ability of patients to maintain their independence in the context of their daily life and encompass dimensions of physical, emotional, and cognitive state.

ECOG Performance Status
A tool for doctors and researchers to assess how a patient's disease is progressing, how the disease affects the daily living abilities of the patient, and how to determine appropriate treatment and prognosis.

Edmonton Functional Assessment Tool (EFAT)
A tool to evaluate functional performance of patients with advanced cancer over time and to document the degrees of functional performance of patients throughout the terminal phase.

Karnofsky Performance Scale
Commonly used for assessing terminally ill patients, often used to determine appropriateness of hospice referral.

Katz Index of Independence in Activities of Daily Living
Assesses the ability of patients to conduct activities of daily living.

Palliative Performance Scale version 2 (PPSv2)
Measures the functional status of a patient and assigns a Palliative Performance Value; serves as a communication tool for quickly describing a patient's current functional level.

Psychosocial Care

The following is a selection of tools that can be used to measure the psychological and social needs of patients and caregivers.

Afterdeath Bereaved Family Interview (hospital version)
A survey used to measure quality of care at the end of life from the unique perspective of family members. Please complete the Toolkit Registration Form.

Afterdeath Bereaved Family Interview (hospice version)

Afterdeath Bereaved Family Interview (nursing home version)

Beck Depression Inventory (BDI)
A 21-item multiple choice test used for assessing the presence and degree of depression in adolescents and adults. The BDI is copyrighted, and may not be reproduced here. Please contact the PsychCorp and Harcourt Assessment Center for more information.

Blessed-Roth Dementia Scale (DS)
A brief behavioural scale based on the interview of a close informant. The DS has proved to be a sensitive and specific screening test for dementia.

Caregiver Strain Index
A tool that measures strain related to care provision. Used to assess individuals who have assumed the role of caregiver for an older adult.

Geriatric Depression Scale (long form)
A 30-item screening tool for symptoms of depression in the elderly.

Geriatric Depression Scale (short form)
A 15-item screening tool for symptoms of depression in the elderly.

Hamilton Depression Scale
Provides an indication of depression and, over time, provides a guide to progress.

Herth Hope Index
A 12-item interview containing three dimensions: temporality and future, positive readiness and expectance, and interconnectedness. Tested in community and hospital patients and family members.  Please contact the author for permission to use this tool.

Mini-Mental State Examination
This tool is copyrighted and is available from Psychological Assessment Resources (PAR).  If you have not already established a qualification level with PAR, please complete the Qualification Form for Medical and Allied Health Professionals and return it with your first order.

Mini Mental State Questionnaire
A screening tool for assessing cognitive impairment.

Needs at the End-of-life Screening Tool (NEST)
NEST is a comprehensive assessment and outcome measures instrument.

Palliative Care Outcome Scale (POS)
A 10-item scale (plus an open question) that was specifically developed and validated for palliative care and covers physical symptoms, patient and family or caregiver anxiety/fears and well being. 

Scales of Psychological Well-Being
Self-report scales to assess an individual's well-being at a particular moment in time within each of the following 6 dimensions: autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, self-acceptance.  This tool is not available for viewing.

Short Portable Mental Health Questionnaire (SPMSQ)
The SPMSQ is a 10-item test measuring the presence and the degree of intellectual impairment of the elderly.

Caregiver Assessment

The following is a selection of tools that measure grief reactions; used to assess bereavement needs and outcomes:

Afterdeath Bereaved Family Interview (Hospital)
A survey used to measure quality of care at the end of life from the unique perspective of family members. Please complete the Toolkit Registration Form.

Afterdeath Bereaved Family Interview (Hospice)

Afterdeath Bereaved Family Interview (Nursing Home)

Caregiver Strain Index
A tool that measures strain related to care provision.  Used to assess individuals who have assumed the role of caregiver for an older adult.

FAMCARE Scale
A 20-item scale measuring family satisfaction with health care given to the patient and to them.

Grief Resolution Index
Measures how well a widow has come to terms with death.

Inventory of Complicated Grief
A tool to measure the maladaptive symptoms of loss.

Quality of Life

The following is a selection of tools designed to measure quality of life for patients with advanced disease.

EORTC QOL Scale 
A 30-item, cancer specific questionnaire developed by the European Organization for Research and Treatment of Cancer for assessing the quality of life in cancer patients.  Contact the EORTC Quality of Life Department for more information:http://groups.eortc.be/qol

FACT-G (FACT-L)
Used to assess the functional status of patients with specific cancer diagnosis. 
Complete the FACIT User's Agreement in order to access and use this tool.

McGill Quality of Life Index
A 20-item scale specifically developed to measure quality of life at the end of life.  Contact the author at robin.cohen@mcgill.ca to complete the User's Agreement and obtain a copy of this tool.

Missoula-VITAS Quality of Life Index (MVQOLI)
The MVQOLI asks patients about 5 dimensions or domains of quality of life: 
symptoms; function; interpersonal; well-being; and transcendence. The instrument is specifically designed to assess the patients personal experience in each of these dimensions.  Please register with the author to use this tool.

Needs at the End-of-life Screening Tool (NEST)
NEST is a comprehensive assessment and outcome measures instrument.

Quality of Life at the End of Life (QUAL-E)
A tool to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.