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Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief
Authors:
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.
Abstract:
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.
DOI:
10.1016/j.jpainsymman.2017.04.022
URL:
https://www.sciencedirect.com/science/article/pii/S0885392417303561?via%3Dihub
Journal:
J Pain Symptom Manage
issn:
0885-3924
Publication year:
2017
pages:
961-972.e16
Symptom status:
Cognitive/mental state
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Disease:
Certain infections and parasitic diseases and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
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 (versions: mBDI; BDI-Y; BDI-SF) BEQ-24 - Bereavement Experience Questionnairee-24 BFI - Brief Fatigue Inventory (versions: MBFI - ModiefiedBFI)) BGQ - Brief Grief Questionnaire BHI - Brief Hospice Inventory BHS - Beck Hopelessness Scale Borg (RPE) Scale - Borg Rating of Perceived Exertion Scale (versions: mBORG) BPI - Brief Pain Inventory (versions: BPI-sf; mBPI; mBPI-SF; BPI-PR - BPI-Proxy Report; mBPI-Proxy; BPI-DPN - BPI-Diabetic Painful Neuropathy; BPI-20) BPW - Breakthrough Pain Questionnaire (versions: BPQC - Child version) BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) 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 (versions: CES-D-R; CES-D-8; CES-D 9; CES-D-10; CES-D-11; CES-D-13; CES-D-15; CES-D-20; CES-D-Children; CES-D-SF; CES-D m) 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 (versions: CQOLI-R) 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 (versions: MCSI-1;MCSI-2; CSI expanded ) 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 (versions: DT for parents) EDS - Edinburgh Depression Scale (versions: BEDS - Brief EDS) 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: M-ESAS for critically ill; ESAS-PD - ESAS-Parkinson's Disease; M-ESAS; ESAS-R) ESS - Epworth Sleepiness 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 FS - Faces Scale (versions: FS-6 - 6 points FS; FS-7 - 7 points FS) FSS - Fatigue Severity Scale (versions: FSS-7 - 7-item version and FSS-5 - 5-item version) GDS - Geriatric Depression Scale (versions: GDS-SF; GDS-5; GDS-15; GDS-30; GDS-12 R - GDS-12 Recidential) GEM - Grief Evaluation Measure GEQ - Grief Experience Questionnaire GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-7; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36) Global SOB - Global Shortness of Breath Question HADS - Hospital Anxiety and Depression Scale HAM-D - Hamilton Rating Scale for Depression [alias: HAMD; HDRS; HRSD] (versions: HAM-D6; HAM-D17) HGRC - Hogan Grief Reaction Checklist HQLI - Hospice Quality of Life Index ICG - Inventory of Complicated Grief (versions; ICG-R; ICG-RC) IES - Impact of Event Scale (versions: IES-R; IES-13; CRIES - Children's revised IES; IES-IDs - IES-Intellectual Disabilities) 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 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 (versions: MFSI-20; MFSI-30; MFSI-SF) MHI - Mental Health Inventory (verisons: MHI-5; MHI-13; MHI-17; MHI-38) MM-CGI - Marwit-Meuser Caregiver Grief Inventory (versions: MM-CGI-SF; MM-CGI-BF - Brief) mMRC - Modified Medical Research Council Dyspnea Scale MPAC - Memorial Pain Assessment Card MPQ - McGill Pain Questionnaire (versions MPQ-SF; SF-MPQ; LF-MPQ; MPQ-VAS)
MQLS - McMaster Quality of Life Scale MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL; MQOL-CSF - MQOL-Cardiff Short form] (versions: MQOL-7; MQOL-11) 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 (versions: MSAS-SF; MSAS-family; MSAS-caregivers; MSAS-hospice staff) MVQOLI - Missoula-VITAS Quality of Life Index (versions: version-15R) NA-ACP - Needs Assessment for Advanced Cancer Patients NRS - Numeric Rating Scale (versions: NRS-6; NRS-11; NRS-21; NRS-101) OCD - Oxygen Cost Diagram Pain Perception Profile PAQ - Patient Autonomy Questionnaire PASS - Pain Anxiety Symptoms Scale (versions: PASS-SF; PASS-20) Patient Outcome Questionnaire Patient Pain Interview Patient Pain Questionnaire PDI - Pain Disability Index PDI - Patient Dignity Inventory (versions: PDI-25) PFSDQ - Pulmonary Functional Status & Dyspnea Questionnaire (versions: PFSDQm) PFS - Piper Fatigue Scale (versions: PFS-R; PFS-12; Quick Piper) PG - Prolonged Griefe Scale (versions: PG-13; PG-12) PHQ - Patient Health Questionnaire (versions: PHQ-2; PHQ-4; PHQ-8; PHQ-9; PHQ-9 short; aPHQ-9; PHQ-A; PHQ-22; PHQ-8; PHQ-15) 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 (versions: POMS-11; POMS-14; POMS-37; POMS-65; Brief POMS; POMS-Adolescent; POMS-sf; revised POMS; POMS-F - POMS-fatigue; POMS-Bi - POMS-Bipolar) 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 (versions: QODD-D-Ang - QODD-D-Angehörige; QODD-D-MA - QODD-D-Mitarbeiter) QoLLTI - Quality of Life in Life-Threatening Illness (versions: QoLLTI-F – Family Carer; QoLLTI-P - patient) 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 (also: ZSDS ; versions: mZSDS) SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36) database.cosmin.nl SGRQ - St. George's Respiratory Questionnaire (versions: SGRQ-C - SGRQ-COPD; SGRQ-IPF - SGRQ-Idiopathic Pulmonary Fibrosis) SNI - Spiritual Needs Inventory SPWB - Scales of Psychological Well-Being (versions: SPWB-SF) SQ - Symptom Questionnaire STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) 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 (versions: vertical; horizontal) VRS - Verbal (Pain) Rating Scale (versions: VRS-5; VRS-7; VRS-16) 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 Inventory/interview (also Zarit Caregiver Burden Inventory) (versions: ZBI-4; ZBI-12; ZBI-22; ZBI-SF)
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