COSMIN database

Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief

Aslakson, R. A., Dy, S. M., Wilson, R. F., Waldfogel, J., Zhang, A., Isenberg, S. R., Blair, A., Sixon, J., Lorenz, K. A., and Robinson, K. A.
CONTEXT: Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level.

OBJECTIVES: The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation.

METHODS: We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain.

RESULTS: We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools.

CONCLUSION: Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.
J Pain Symptom Manage
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Self-rated health
Overall quality of life:
Overall quality of life
Adults (18-65)
Children (0-18)
Seniors (65+)
Certain infections and parasitic diseases and related symptoms
Codes for special purposes
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
Diseases of and symptoms related to the circulatory system
Diseases of and symptoms related to the digestive system
Diseases of and symptoms related to the genitourinary system
Diseases of and symptoms related to the nervous system
Diseases of and symptoms related to the respiratory system
Endocrine, nutritional and metabolic diseases and related symptoms
Mental and behavioural disorders and related symptoms
Neoplasms and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
3 - Diaries
7 - Observations
After Death Bereaved Family Member Interview
ALSFRS-R - revised ALS Functional Rating Scale
ATS-DLD-78 - American Thoracic Society Respiratory Questionnaire 78 items
BCSS - Breathlessness, Cough and Sputum Scale
BDI - Beck Depression Inventory   
BEDS - Brief Edinburgh Depression Scale
BEQ-24 - Bereavement Experience Questionnairee-24
BFI - Brief Fatigue Inventory
BGQ - Brief Grief Questionnaire
BHI - Brief Hospice Inventory
BHS - Beck Hopelessness Scale
BPI - Brief Pain Inventory
Breakthrough Pain Questionnaire
BSI-18 - Brief Symptom Inventory-18 items
CAMPAS-R - Cambridge Palliative Assessment Schedule
CBS-EOLC - Caregiver’s Burden Scale in end-of-life care
CEQUEL - Caregiver Evaluation of Quality of End-of-Life Care
CES-D - Centre for Epidemiologic Studies-Depression Scale   
CFS - Chalder Fatigue Scale [alias: FQ - Fatigue Questionnaire][alias: FRS - Fatigue Rating Scale]
CHQ-D - Chronic Heart Failure Questionnaire-dyspnea subscale
Chronic lung disease (CLD) severity index
CIS - Caregiving Impact Scale
City of Hope Mayday Pain Resource Center Pain Audit Tools
City of Hope Mayday Pain Resource Center Patient Pain Questionnaire
CLASP - Cardiovascular Limitations and Symptoms Profile
CMSAS - Condensed Memorial Symptom Assessment Scale
CQOLI - Caregiver Quality of Life Index
CRA - Caregiver Reaction Assessment   
CRQ-D - Chronic Repiratory (disease) Questionnaire-dyspnea subscale
CRQ-IAS-D - Chronic Repiratory (disease) Questionnaire self-interviewer administered-dyspnea subscale
CRQ-SAI-D - Chronic Repiratory (disease) Questionnaireself-administered-dyspnea subscale
CRQ-SAS-D - Chronic Respiratory Questionnaire Standardized dyspnea questions
CSDD - Cornell Scale for Depression in Dementia
CSI - Caregiver Strain Index   
DAQ - Dyspnea Assessment Questionnaire
DDQ (COPD) - Dyspnea Descriptor Questionnaire (COPD)
DDQ(heart failure) - Dyspnea Descriptor Questionnaire (heart failure)
Descriptor Differential Scale
DS - Demoralization Scale
DT - Distress Thermometer   
EFAT-2 - Edmonton Functional Assessment Tool-second version
EFAT - Edmonton Functional Assessment Tool
Emanuel and Emanuel Medical Directive
End of Life in Dementiae Satisfaction with Care & Comfort Assessment in Dying
EORTC QLQ-LC13 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire in patients with Lung cancer 13 item
EORTC QLQ-OES18 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire in patients with oesophageal cancer 18 items
EORTC QLQ-STO22 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire in patients with gastric cancer 22 item
ESAS - Edmonton Symptom Assessment System (versions: ESAS-PD - ESAS-Parkinson's Disease)
ESS - Epworth Sleepiness Scale
Faces Scale
FACIT-Pal - Functional Assessment of Chronic Illness Therapy-Palliative Care
FACQ-PC - Family Appraisal of Caregiving Questionnaire for Palliative Care
FAI / FSI - Fatigue Assessment Instrument (FAI) = Fatigue Severity Inventory (FSI)
FAMCARE - Family Satisfaction with Advanced Cancer Care
Family Assessment of Treatment of End-of-Life survey
Family Evaluation of Hospice Care
Family Satisfaction in the ICU
FPQ - Family Pain Questionnaire
FSS - Fatigue Severity Scale (versions: FSS-7 - 7-item version and FSS-5 - 5-item version)   
GDS - Geriatric Depression Scale   
GEM - Grief Evaluation Measure
GEQ - Grief Experience Questionnaire
GHQ-12 - General Health Questionnaire 12 items
Global SOB - Global Shortness of Breath Question
HADS - Hospital Anxiety and Depression Scale   
HAM-D - Hamilton Rating Scale for Depression [alias: HDRS][alias: HRSD]   
HGRC - Hogan Grief Reaction Checklist
HQLI - Hospice Quality of Life Index
ICG (Also: ICG-R) - Inventory of Complicated Grief (also revised version)
IES - Impact of Event Scale
Integrated Pain Score
ITG - Inventory of Traumatic Grief
I-W SR Index - Ironson-Woods Spirituality/Religiousness Index (Short Form)
LCADL - London Chest Activity of Daily Living Scale
LCS - Life Closure Scale
LEQ - Life Evaluation Questionnaire
MAC (Also: Mini-MAC) - (Mini-) Mental Adjustment to Cancer
mBORG - modified BORG scale
McCusker 4-item instrument for continuity
MDASI - MD Anderson Symptom Inventory
MDRS-D - Motor Neurone Disease Dyspnoea Scale-Dyspnoea subscale
MFSI - Multidimensional Fatigue Symptom Inventory
MHI - Mental Health Inventory (verisons: MHI-5 ; MHI-5 items; MHI-38 - MHI 38 items)
MMCGI (Also: MMCGI-SF) - MarwiteMeuser Caregiver Grief Inventory (Also short form)
mMRC - Modified Medical Research Council Dyspnea Scale
MPAC - Memorial Pain Assessment Card
MPQ - McGill Pain Questionnaire    
MQLS - McMaster Quality of Life Scale
MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL] (also: MQOL-CSF - MQOL-Cardiff Short form)
MRC Dyspnoea Scale - Medical Research Council Dyspnoea Scale   
MRDI - McCanse Readiness for Death Instrument
MSAS-GDI - Memorial Symptom Assessment Scale-Global Distress Index
MSAS - Memorial Symptom Assessment Scale (modifications exist for family caregivers and for hospice staff)
MVQOLI - Missoula-VITAS Quality of Life Index
NA-ACP - Needs Assessment for Advanced Cancer Patients
NRS - Numeric Rating Scale   
OCD - Oxygen Cost Diagram
Pain Perception Profile
PAQ - Patient Autonomy Questionnaire
PASS - Pain Anxiety Symptoms Scale   
Patient Outcome Questionnaire
Patient Pain Interview
Patient Pain Questionnaire
PDI - Pain Disability Index   
PDI - Patient Dignity Inventory
PFSDQ-M - modified Pulmonary Functional Status & Dyspnea Questionnaire
PFS - Piper Fatigue Scale (Also: PFS-revised)
PG-12 - Prolonged Griefe-12
PG-13 - Prolonged Griefe-13
PHQ-9 - Patient Health Questionnaire-9
PMI - Pain Management Index
PNPC (Also: PNPC-sv) - Problems and needs in Palliative Care Questionnaire (Also: PNPC-sv - short version)
POMS - Profile of Mood States
POS - Palliative care Outcome Scale   
PRIME MD - Primary Care Evaluation of Mental Disorders
PSE - Present State Exam
Psychosocial Pain Assessment Form
QODD - Quality of Dying and Death Questionnaire
QoLLTI-F - Quality of Life in Life-Threatening Illness–Family Carer Version
QUAL-E - Quality of Life at the End of Life
Quality of communication questionnaire
Quality of End-of-Life Care and Satisfaction with Treatment
RAND - Rand Instrument shortness of breath battery from the MedicaL History Questionnaire
RDCQ - Reactions to the Diagnosis of Cancer Questionnaire
Relatives’ patient management questionnaire
R-GEI - Revised Grief Experience Inventory
SDS - Zung Self-rating Depression Scale
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SGRQ - St. George's Respiratory Questionnaire   
SNI - Spiritual Needs Inventory
SPWB - Scales of Psychological Well-Being
SQ - Symptom Questionnaire
STAI - State-Trait Anxiety Inventory
Starck Scale
Symptom Anxiety and Depression Scale
TQPM - Cancer Total Quality Pain Management Patient Assessment Tool
TRIG - Texas Revised Inventory of Grief
TTBQ (Also: TTBQ2-CG30) - Two-Track Bereavement Questionnaire
Two single items: Are you depressed? and Have you lost interest?
UCDQ - Universitiy of Cincinnati Dyspnea Questionnaire
UCSD SOBQ - University of California San Diego Shortness of Breath Questionnaire
Unmet Analgesic Needs Questionnaire
VAS - Visual Analogue Scale   
VRS - Verbal (Pain) Rating Scale
WALT - Willingness to Accept Lifesustaining Treatment instrument
WHO (Five) Well-Being Index
WHYMPI - West Haven-Yale Multidimensional Pain Inventory
Wisconsin BPS - Wisconsin Brief Pain Scale/Questionnaire
ZBI - Zarit Burden Interview