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Patient-reported outcome measures (PROMs) in pancreatic cancer: a systematic review
Authors:
Maharaj, A. D., Samoborec, S., Evans, S. M., Zalcberg, J., Neale, R. E., Goldstein, D., Merrett, N., White, K., Croagh, D., Pilgrim, C. H. C., Evans, P., Knowles, B., Leong, T., Philip, J., Smith, M., and Ioannou, L.
Abstract:
BACKGROUND: The aim of this systematic review is to examine patient-reported outcome measures (PROMs), their attributes and application in patients with pancreatic cancer (PC). METHOD: A systematic literature search was undertaken of articles published to June 2018 to identify PROMs applied in primary studies in PC. Characteristics of the included studies and PROMs were described with identified scales grouped into five domains. The psychometric properties of the identified PROMs were further assessed for reliability and validity among patients with PC. RESULTS: From 1688 studies screened, 170 were included. Almost half (48%) were conducted in patients with unresectable PC; the majority of these (68%) were evaluated in randomized controlled trials. Median questionnaire completion rates fell below 10% of the original cohort within 12 months in patients with unresectable PC compared to 75% in patients with resectable PC. Seventy PROMs were identified, 32 measuring unidimensional parameters (e.g. pain) and 35 measuring multidimensional (e.g. quality of life) constructs. Only five (7%) PROMs were disease-specific and 13 (19%) were validated in patients with PC. Fifty scales were grouped into 19 physical, 9 psychological, 6 psychiatric, 9 social and 7 other domains. CONCLUSION: Three multidimensional PROMs, the: (i) FACT-HEP in unresectable PC; (ii) QLQ-PAN26 (in conjunction with its core QLQ-C30 PROM) in resectable PC; and (iii) MDASI-GI are recommended as instruments to capture quality of life in patients with PC. Summarised scales and psychometric evaluation provide a framework to choose PROMs for scales not captured by the recommended PROMs.
DOI:
10.1016/j.hpb.2019.09.002
Journal:
HPB (Oxford)
issn:
1365-182x
Publication year:
2020
pages:
187-203
Symptom status:
Cognitive/mental state
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Disease:
Diseases of and symptoms related to the digestive system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
ADDQoL - Audit of Diabetes Dependent Quality of Life (versions: ADDQOL-13; ADDQOL-16; ADDQOL-17; ADDQOL-18; ADDQOL-19) BAI - Beck Anxiety Inventory (versions: BAI-Youth) BDI - Beck Depression Inventory (versions: mBDI; BDI-Y; BDI-SF) BFI - Brief Fatigue Inventory (versions: MBFI - ModiefiedBFI)) BHS - Beck Hopelessness Scale BIS - Body Image Scale (versions: mBIS; BIS adapted; BIS-R) 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) BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) CARES - Cancer rehabilitation evaluation system (versions: CARES-SF) 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) CLS - Cantril Ladder Scale DDQ - Digestive Disease Quality of life questionnaire (versions: DDQ-15 items) Duke-UNC Functional Social Support Questionnaire EORTC QLQ-C15-PAL - European Organization for Research and Treatment of Cancer Quality of Life Questionnaires EORTC QLQ-C30 - European Organization for Research and Treatment of Cancer Quality of Life Questionnaires Core-30 item (versions: EORTC QLQ-C24; EORTC QLQ-C30-v1; EORTC QLQ-C30-v2; EORTC QLQ-C30v3) EORTC QLQ-PAN26 - EORTC Quality of life Questionnaire -Pancreatic Cancer EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) ESAS - Edmonton Symptom Assessment System (versions: M-ESAS for critically ill; ESAS-PD - ESAS-Parkinson's Disease; M-ESAS; ESAS-R) FAACT - Functional Assessment of Anorexia Cachexia Therapy FACIT-F - Functional Assessment of Chronic Illness Therapy- Fatigue Scale FACIT-Sp - FACIT-Spiritual Wellbeing scale (versions: FACIT-Sp-12) FACT-An - Functional Assessment of Cancer Therapy-Anemia FACT - Functional Assessment of Cancer Therapy FACT-G - Functional Assessment of Cancer Therapy-General (versions: FACT-G7) FACT-Hep - Functional Assessment of Cancer Therapy-Hepatobiliary questionnaire FCRI - Fear of Cancer Recurrence Inventory FLIC - Functional Living Interview questionnaire for Cancer FLIE - Functional Living Index-Emesis (versions: FLIE-M; FLIE-5 day recall) FSI - Fatigue Symptom Inventory GDS - Geriatric Depression Scale (versions: GDS-SF; GDS-5; GDS-15; GDS-30; GDS-12 R - GDS-12 Recidential) GIQLI - Gastrointestinal Quality of Life Index GRoC - Global Rating of Change scales HADS - Hospital Anxiety and Depression Scale HAM-D - Hamilton Rating Scale for Depression [alias: HAMD; HDRS; HRSD] (versions: HAM-D6; HAM-D17) Kurihara Questionnaire (versions: modified) LASA - Linear Analogue Self-Assessment Questionnaire (versions: LASA-VQ - LASA Voice Quality) Linear analogue Multiscale / Uniscale Questionnaire LOT - Life Orientation Test (versions: LOT-R) MCBS - Medicare Current Beneficiary Surveya MDASI - MD Anderson Symptom Inventory MOS-SF - Medical Outcome Study Short-Form General Health Survey (versions: MOS-19; MOS-20; MOS-24) MPAC - Memorial Pain Assessment Card MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL; MQOL-CSF - MQOL-Cardiff Short form] (versions: MQOL-7; MQOL-11) MSAS - Memorial Symptom Assessment Scale (versions: MSAS-SF; MSAS-family; MSAS-caregivers; MSAS-hospice staff) NRS - Numeric Rating Scale (versions: NRS-6; NRS-11; NRS-21; NRS-101) PCL - Problem Checklist 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) 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) PSQI - Pittsburgh Sleep Quality Index PSWQ - Penn State Worry Questionnaire (versions: PSWQ-Abbreviated; PSWQ-A-m) PTPQ - Prognosis and Treatment Perceptions Questionnaire RRQoL - Rolls-Royce Quality of Life RSCL - Rotterdam Symptom Checklist (versions: RSCL-M) SAQ - Sleep Assessment Questionnaire SCNS - Supportive Care Needs Survey (versions: SCNS-SF; SCNS-SF34; SCNS-LF59; SCNS-P&C - SCNS-Partner and Caregivers; SCNS-ST9 - SCNS-Screening Tool-9; SCNS34-BS - SCNS 34 +brain subscale) SCQ - Self-administered Comorbidity Questionnaire SF-12 - 12-item Short Form Health Survey [alias: RAND-12] (versions: SF-12v2; VR-12 - Veterans SF-12; SF-12 MCS; SF-12 PCS) 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 SF-8 - 8-item Short Form Health Survey [alias: Medical Outcomes Study (MOS) SF-8] SGA - Subjective Global Assessment (versions: PG-SGA - Patient-Generated SGA) SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP; SIP/ALS-19) SQI - Spitzer Quality of Life Index (alias: SQLI; SQL) SQOL - Sexual Quality of Life Questionnaire (SQOL-M - Male version; SQOL-F - female version) SSQ - Subjective Significance Questionnaire STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) VAS - Visual Analogue Scale (versions: vertical; horizontal) VES - Vulnerable Elders Survey (versions: VES-13) Visick Scale WHOQOL - World Health Organization Quality of Life Assessment (versions: WHOQOL-8; WHOQOL-26)
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