Assessment Tools for Palliative Care

Project Summary Title and Description

Assessment Tools for Palliative Care
Technical Brief
Authors of Report
Methodology description
First, we engaged Key Informants representing both patient/caregiver and provider/researcher perspectives to help guide the project. We then sought systematic reviews of palliative care assessment tools and applications of tools through searches of PubMed, CINAHL, Cochrane, PsycINFO and PsycTESTS from January 1, 2007 to August 29, 2016. We conducted supplemental searches of information on palliative care tools, including comprehensive reviews published prior to our date limitation, Web sites, and a targeted search for primary articles to identify tools where no recent high-quality systematic review was identified. We organized tools by the eight domains (subdomains) from the National Consensus Project Clinical Practice Guidelines for Palliative Care: structure and process, physical, psychological and psychiatric, social (caregiver), spiritual and religious, cultural, care at the end of life (bereavement), ethical and legal; as well as a ninth domain for multidimensional tools (quality of life and patient experience).
Report not yet published. Data entered retrospectively via importing existing word documents from the final report. Uploaded files contain data on supplemental search results, palliative care tool (tool) characteristics, measurement characteristics, psychometric properties of tools, population and setting characteristics of tools ROBIS assessments, reference files. This was a technical brief, not a systematic review.
Funding Source

Key Questions

1. Guiding Question 1: In each of the palliative care domains, what palliative care assessment tools exist and have been evaluated in palliative care populations and/or settings?
2. Guiding Question 2: What is the state of current research on the reliability, validity, responsiveness, and usability of these assessment tools?
3. Guiding Question 3: What data exist regarding the application of these tools specifically in clinical care, as quality indicators, or for evaluation of interventions?
4. Guiding Question 4: What are the key gaps in tool development and evaluation and what are the opportunities for future research?

Associated Extraction Forms

Associated Studies (each link opens a new tab)

Information and communication technology for managing pain in palliative care: a review of the literature.2015
Interventions for alleviating cancer-related dyspnea: a systematic review.2008
A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators.-- Not Found --
Hopelessness at the end of life: the utility of the hopelessness scale with terminally ill cancer patients.2006
Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis.
Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill.2006
Major depression, adjustment disorders, and post-traumatic stress disorder in terminally ill cancer patients: associated and predictive factors.2004
Evaluation of quality-of-life measures for use in palliative care: a systematic review.2010
Families' perceptions of veterans' distress due to post-traumatic stress disorder-related symptoms at the end of life.2010
Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers.2014
Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care.2010
Educating nursing home staff about the progression of dementia and the comfort care option: impact on family satisfaction with end-of-life care.2009
Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care?2007
Family satisfaction with end-of-life care in seriously ill hospitalized adults.2000
Proxy perspectives regarding end-of-life care for persons with cancer.2008
Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial.2009
Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial.2015
Development of the Grief Experience Questionnaire.1989
Primary Results of the Patient-Centered Disease Management (PCDM) for Heart Failure Study: A Randomized Clinical Trial.
The EORTC QLQ-LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ-C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life.1994
Clinical and psychometric validation of a questionnaire module, the EORTC QLQ-STO 22, to assess quality of life in patients with gastric cancer.2004
Clinical and psychometric validation of an EORTC questionnaire module, the EORTC QLQ-OES18, to assess quality of life in patients with oesophageal cancer.2003
Perceived exertion as an indicator of somatic stress.1970
Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study.2014
Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care.2007
Measuring core bereavement phenomena.1997
Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index.1998
Lifestyle interference and emotional distress in family caregivers of advanced cancer patients.2002
Caregiver satisfaction with out-patient oncology services: utility of the FAMCARE instrument and development of the FAMCARE-6.2011
Measuring families' perceptions of care across a health care system: preliminary experience with the Family Assessment of Treatment at End of Life Short form (FATE-S).2010
The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III).1999
Real-time clinical application of quality-of-life assessment in advanced lung cancer.2002
Validation of the Edmonton Symptom Assessment Scale.2000
Shorter symptom assessment instruments: the Condensed Memorial Symptom Assessment Scale (CMSAS).2004
Effectiveness of advanced illness care teams for nursing home residents with dementia.
Palliative care teams in the intensive care unit: a randomised, controlled, feasibility study.2010
The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care.2008
Implementing touch-screen technology to enhance recognition of distress.2009
Randomized controlled trial of maintaining quality of life during radiotherapy for advanced cancer.2013
Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands.2012
QOLLTI-F: measuring family carer quality of life.2006
Living with cancer: "good" days and "bad" days--what produces them? Can the McGill quality of life questionnaire distinguish between them?2000
Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain.1997
Family evaluation of hospice care: results from voluntary submission of data via website.2005
Development and initial validation of a family appraisal of caregiving questionnaire for palliative care.2006
Integrating palliative and critical care: evaluation of a quality-improvement intervention.2008
Quality indicators for palliative care: update of a systematic review.2013
The life closure scale: additional psychometric testing of a tool to measure psychological adaptation in death and dying.2004
Which measurement scales should we use to measure breathlessness in palliative care? A systematic review.2007
Development of a patient-specific dyspnoea questionnaire in motor neurone disease (MND): the MND dyspnoea rating scale (MDRS).2000
A new tool to assess family caregivers' burden during end-of-life care.2008
A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study.2012
Validation of a new dyspnea measure: the UCSD Shortness of Breath Questionnaire. University of California, San Diego.
Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service.2010
Effects of a program for coordinated care of advanced illness on patients, surrogates, and healthcare costs: a randomized trial.
Fatigue and its risk factors in cancer patients who seek emergency care.2008
Validation of a symptom measure suitable for use among palliative care patients in the community: CAMPAS-R.2004
Variability in answers to a questionnaire on respiratory symptoms.1959
Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial.
The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial.2016
Development of the Texas Inventory of Grief.1977
Nationwide veterans affairs quality measure for cancer: the family assessment of treatment at end of life.2008
Phase II study of an outpatient palliative care intervention in patients with metastatic cancer.2009
Prevalence and determinants of complicated grief in general population.2010
Factorial validity of the Texas Revised Inventory of Grief-Present scale among bereaved older adults.2010
Impact of an inpatient palliative care team: a randomized control trial.2008
Development and validation of a standardized measure of activity of daily living in patients with severe COPD: the London Chest Activity of Daily Living scale (LCADL).2000
Does palliative care improve quality? A survey of bereaved family members.2008
Validation of a vertical visual analogue scale as a measure of clinical dyspnea.-- Not Found --
Validity of the numeric rating scale as a measure of dyspnea.1998
Pain and fatigue management: results of a nursing randomized clinical trial.2002
Does hospital at home for palliative care facilitate death at home? Randomised controlled trial.1999
A randomized controlled trial of a hospital at home service for the terminally ill.2000
Family member satisfaction with end-of-life decision making in the ICU.2008
Emergency Department-Initiated Palliative Care in Advanced Cancer: A Randomized Clinical Trial.2016
Identifying bereaved subjects at risk of complicated grief: Predictive value of questionnaire items in a cohort study.2011
A preliminary study of the utility of the brief hospice inventory.2001
A measure of quality of life for clinical trials in chronic lung disease.1987
Development and testing of a new measure of health status for clinical trials in heart failure.-- Not Found --
Understanding bereaved caregiver evaluations of the quality of dying and death: an application of cognitive interviewing methodology to the quality of dying and death questionnaire.2012
Quality of care in a Veterans Affairs' nursing home-based hospice unit.2007
The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team.2002
Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group.1999
Development and testing of the spiritual needs inventory for patients near the end of life.2006
Family reports of dying patients' distress: the adaptation of a research tool to assess global symptom distress in the last week of life.2001
An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial.2014
Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions.2010
Development and validation of the Hogan Grief Reaction Checklist.-- Not Found --
Results of a Hospital-Based Palliative Care Intervention for Patients With an Acute Exacerbation of Chronic Heart Failure.2016
Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments.2006
A randomized trial of the cost effectiveness of VA hospital-based home care for the terminally ill.1992
Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center.2003
The Ironson-woods Spirituality/Religiousness Index is associated with long survival, health behaviors, less distress, and low cortisol in people with HIV/AIDS.2002
Brief measure for screening complicated grief: reliability and discriminant validity.
Racial differences in next-of-kin participation in an ongoing survey of satisfaction with end-of-life care: a study of a study.2006
A self-complete measure of health status for chronic airflow limitation. The St. George's Respiratory Questionnaire.1992
The grief evaluation measure (GEM): an initial validation study.2005
Quality of life in palliative cancer care: results from a cluster randomized trial.2001
A palliative-care intervention and death at home: a cluster randomised trial.
The Edmonton Functional Assessment Tool: preliminary development and evaluation for use in palliative care.1997
The Edmonton Functional Assessment Tool: further development and validation for use in palliative care.2001
Utilizing pain assessment scales increases the frequency of diagnosing pain among elderly nursing home residents.2001
Hospice role in alleviating the emotional stress of terminal patients and their families.1985
A randomised controlled trial of hospice care.1984
Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis.2016
Health care proxy grief symptoms before the death of nursing home residents with advanced dementia.2008
The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia.-- Not Found --
The Demoralization Scale: a report of its development and preliminary validation.2004
Family members' care expectations, care perceptions, and satisfaction with advanced cancer care: results of a multi-site pilot study.1997
Predictive role of different dimensions of burden for risk of complicated grief in caregivers of terminally ill patients.2014
Development and testing of the Pulmonary Functional Status and Dyspnea Questionnaire (PFSDQ).-- Not Found --
Evaluation of dyspnea during physical and speech activities in patients with pulmonary diseases.1998
Evaluating symptoms in chronic obstructive pulmonary disease: validation of the Breathlessness, Cough and Sputum Scale.2003
Measuring Experience With End-of-Life Care: A Systematic Literature Review.2015
A shortened version of an instrument measuring bereavement.1993
Validation of the Cardiovascular Limitations and Symptoms Profile (CLASP) in chronic stable angina.-- Not Found --
Measuring family satisfaction with care and quality of dying in the intensive care unit: does patient age matter?
Underutilization of mental health services among bereaved caregivers with prolonged grief disorder.2011
The development of the Brief Edinburgh Depression Scale (BEDS) to screen for depression in patients with advanced cancer.2007
The FAMCARE-Patient scale: measuring satisfaction with care of outpatients with advanced cancer.2009
Measuring patient satisfaction in oncology palliative care: psychometric properties of the FAMCARE-patient scale.2009
The memorial symptom assessment scale: modified for use in understanding family caregivers' perceptions of cancer patients' symptom experiences.2003
Screening for depression in women with metastatic breast cancer: a comparison of the Beck Depression Inventory Short Form and the Hospital Anxiety and Depression Scale.2004
Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial.
Families' perceptions of end-of-life care in Veterans Affairs versus non-Veterans Affairs facilities.2010
The feasibility, reliability and validity of the McGill Quality of Life Questionnaire-Cardiff Short Form (MQOL-CSF) in palliative care population.2005
Reliability and validity of the Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) scale.2009
Assessing pre-death grief in cancer caregivers using the Marwit-Meuser Caregiver Grief Inventory (MM-CGI).2008
Measuring grief in caregivers of persons with acquired brain injury.2006
Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer's disease.2002
Development of a short form inventory to assess grief in caregivers of dementia patients.2005
The McCanse Readiness for Death Instrument (MRDI): a reliable and valid measure for hospice care.1995
A randomized clinical trial of home nursing care for lung cancer patients.1989
An Advanced Practice Nurse Coordinated Multidisciplinary Intervention for Patients with Late-Stage Cancer: A Cluster Randomized Trial.2015
Dyspnoea, disability, and distance walked: comparison of estimates of exercise performance in respiratory disease.1978
Quality of life in cancer patients: use of a revised Hospice Index.-- Not Found --
The relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life, and burden.-- Not Found --
Psychometric properties of carer-reported outcome measures in palliative care: A systematic review.2016
Hospice care for patients with dementia.2007
Agreement among family members in their assessment of the Quality of Dying and Death.
Quality of dying in the ICU: ratings by family members.2005
Factor structure of the Beck Hopelessness Scale in individuals with advanced cancer.2010
Next of kin perspectives on the experience of end-of-life care in a community setting.2007
Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers.2005
Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers.
Randomized clinical trial of a family intervention for prostate cancer patients and their spouses.2007
A confirmatory factor analysis of combined models of the Harvard Trauma Questionnaire and the Inventory of Complicated Grief-Revised: are we measuring complicated grief or posttraumatic stress?2010
Psychiatric disorders following first breast cancer recurrence: prevalence, associated factors and relationship to quality of life.2005
Towards a new clinical tool for needs assessment in the palliative care of cancer patients: the PNPC instrument.2004
A practical instrument to explore patients' needs in palliative care: the Problems and Needs in Palliative Care questionnaire short version.2007
Hospital-based palliative medicine consultation: a randomized controlled trial.2010
Commonalities in grief responding across bereavement and non-bereavement losses.2014
Psychometric characteristics of dyspnea descriptor ratings in emergency department patients with exacerbated chronic obstructive pulmonary disease.2002
Reliability and validity of dyspnea sensory quality descriptors in heart failure patients treated in an emergency department.-- Not Found --
Respecting the spiritual side of advanced cancer care: a systematic review.2015
Measurement of dyspnea in patients treated with mechanical ventilation.1999
Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11.2009
Inventory of Complicated Grief: a scale to measure maladaptive symptoms of loss.1995
The comprehensive care team: a controlled trial of outpatient palliative medicine consultation.
Results of the promoting effective advance care planning for elders (PEACE) randomized pilot study.2014
The Needs Assessment for Advanced Cancer Patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. a study of validity, reliability and acceptability.2005
Bereaved family members' evaluation of hospice care: what factors influence overall satisfaction with services?2008
African American bereaved family members' perceptions of the quality of hospice care: lessened disparities, but opportunities to improve remain.2007
Measuring quality of palliative care: psychometric properties of the FAMCARE Scale.2003
Hopelessness and terminal illness: the construct of hopelessness in patients with advanced AIDS.
The two-track model of bereavement questionnaire (TTBQ): development and validation of a relational measure.2009
Impacting quality of life for patients with advanced cancer with a structured multidisciplinary intervention: a randomized controlled trial.2006
Measuring the meaning of life for patients with incurable cancer: the life evaluation questionnaire (LEQ).1996
Late referral to hospice and bereaved family member perception of quality of end-of-life care.2005
Benefits and challenges in use of a standardized symptom assessment instrument in hospice.2010
A comparison of the original chronic respiratory questionnaire with a standardized version.
Evaluation of the Missoula-VITAS Quality of Life Index--revised: research tool or clinical tool?2005
Measuring patient treatment preferences in end-of-life care research: applications for advance care planning interventions and response shift research.2004
A scoping review of bereavement risk assessment measures: Implications for palliative care.2015
A symptom-based measure of the severity of chronic lung disease: results from the Veterans Health Study.1997
A psychometric evaluation of measures of spirituality validated in culturally diverse palliative care populations.2011
Screening for complicated grief among Project Liberty service recipients 18 months after September 11, 2001.2006
Patients dying with dementia: experience at the end of life and impact of hospice care.2008
Symptom assessment of patients with advanced cancer and AIDS and their family caregivers: the results of a quality-of-life pilot study.-- Not Found --
Inpatient palliative care for patients with acute heart failure: outcomes from a randomized trial.2015
Distinguishable types of dyspnea in patients with shortness of breath.1990
Can we make reports of end-of-life care quality more consumer-focused? results of a nationwide quality measurement program.2011
Web-based collaborative care intervention to manage cancer-related symptoms in the palliative care setting.2016
Measuring quality of life at the end of life: validation of the QUAL-E.2004
A reliability and validity study of the McMaster Quality of Life Scale (MQLS) for a palliative population.1996
Patients' ratings of quality and satisfaction with care at the end of life.2002
A scale for measuring patient perceptions of the quality of end-of-life care and satisfaction with treatment: the reliability and validity of QUEST.
Prevalence and screening of dyspnea interfering with daily life activities in ambulatory patients with advanced lung cancer.2002
Early palliative care for patients with metastatic non-small-cell lung cancer.
Validation of Toolkit After-Death Bereaved Family Member Interview.2001
Family perspectives on end-of-life care at the last place of care.2004
Timing of referral to hospice and quality of care: length of stay and bereaved family members' perceptions of the timing of hospice referral.2007
Screening for psychological distress in palliative care: performance of touch screen questionnaires compared with semistructured psychiatric interview.2009
Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes.
Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire.2005
Palliative care outcomes in surgical oncology patients with advanced malignancies: a mixed methods approach.2012
Family caregiver quality of life: differences between curative and palliative cancer treatment settings.1999
Effects of a transitional palliative care model on patients with end-stage heart failure: a randomised controlled trial.2016
Understanding the association between employee satisfaction and family perceptions of the quality of care in hospice service delivery.2009
Identifying psychological distress at key stages of the cancer illness trajectory: a systematic review of validated self-report measures.2011
Effects of a physician-led home care team on terminal care.1984
A randomized controlled study of a home health care team.1985
Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial.2014
Measuring symptoms of grief and bereavement.1982
Assessing complicated grief using the Two-Track Bereavement Questionnaire (TTBQ). The 10th international conference on Grief and Bereavement in Contemporary Society: East meets West expanding frontiers and diversity2014
Recommended respiratory disease questionnaire for use with adults and children in epidemiological research1978
A category scale with ratio properties for intermodal and interindividual comparisons. Psychosocial Judgements and the Process of Perception. Berlin, Deutscher Verlag.1982
Factor structure of the bereavement experience questionnaire: the BEQ-24, a revised short-form1998
Validation of the Hospice Quality-of-Life Index and the Constipation Assessment Scale in end-stage cardiac disease patients in hospice care2008
National voluntary consensus standards for symptom management and end-of-life care in cancer patients2006

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