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The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review
Authors:
McLeod, C., Wood, J., Tong, A., Schultz, A., Norman, R., Smith, S., Blyth, C. C., Webb, S., Smyth, A. R., and Snelling, T. L.
Abstract:
There is no consensus on how best to measure responses to interventions among children and adults with cystic fibrosis (CF). We have systematically reviewed and summarised the characteristics and measurement properties of tests and tools that have been used to capture outcomes in studies among people with CF, including their reliability, validity and responsiveness. This review is intended to guide researchers when selecting tests or tools for measuring treatment effects in CF trials. A consensus set of these tests and tools could improve consistency in how outcomes are captured and thereby facilitate comparisons and synthesis of evidence across studies.
DOI:
10.1183/16000617.0354-2020
Journal:
Eur Respir Rev
issn:
0905-9180
Publication year:
2021
pages:
Biological and physiological variables:
Biological and physiological variables
Symptom status:
Cognitive/mental state
Functional status:
Physical functioning
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 respiratory system
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
6MWT - 6 Minute Walk Test database.cosmin.nl 7D-PAR - 7 day Physical Activity Recall APS - Annual Population Survey score of the Office of National Statistics ASK - Activities Scale for Kids AWESCORE - Alfred Wellness Score BIS - Body Image Scale (versions: mBIS; BIS adapted) 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) Brasfield or Birmingham score Brasfield scoring system Brody I or II CF-Abd-Score - Cystic Fibrosis Abdominal Score CF-CT score - Cystic Fibrosis computed tomography score CF INTAKE - Cystic Fibrosis Individualised Nutritional Assessment of Kids Eating CFIQ - Cystic Fibrosis Impact Questionnaire CF knowledge scale - Cystic Fibrosis Knowledge Scale CFQ - Cystic Fibrosis Questionnaire (versions: CFQ-R; 14+ for teens; Adolescents; Child; Parent/proxy) CFQoL - Cystic Fibrosis Quality of Life Questionnaire CFQoL scale - Cystic Fibrosis Quality of Life Questionnaire (single item-VAS) CFRSD - Cystic Fibrosis Respiratory Symptom Diary (Also short version: CF Respiratory Symptom Diary–Chronic Respiratory Infection Symptom Score) CF Stigma Scale - Cystic Fibrosis Stigma Scale Chrispin–Norman score CPET - cardiopulmonary exercise testing CQOLCF - Caregiver Quality of Life Cystic Fibrosis CR - Conventional Radiography CRDQ - Chronic Respiratory Disease Questionnaire [alias: CRQ] (versions: SF-CRQ) CT - Computed Tomography DCGM - DISABKIDS Chronic Generic Measure (versions: DCGM-37 items) DISABKIDS-CF Module DPAQ - Daily Pain Assessment Questionnaire eCF-QUEST - electronic version of the CFQoL evaluative self-administered test EQ-5D-Y - European Quality of Life-5 Dimensions for youth (versions: EQ-5D-Y Proxy; EQ-5D-Y-3L; EQ-5D-Y-5L; EQ-5D-Y-VAS; EQ-5D-Y-VAS-e-version) FEV1 - forced expiratory volume in 1 sec FLZ - Fragen zur Lebenszifriedenheit (Questions on Life Satisfaction) (versions: FLZM; FLZM-Cystic Fibrosis) Gastrointestinal symptom tracker
GIQLI - Gastrointestinal Quality of Life Index HAES - Habitual Activity Estimation Scale Hop Tests (versions: Single Leg Hop; Triple Hop; Multiple Hop; Crossover Hop; 6m Timed Hop; Hop Sequence; Figure of eight; Squared Hop; Medial Hop; Lateral Hop; Side Hop Test; Timed Speedy Hop; Up-and-down; Side-to-side; Vertical Hop; Stair Hop; 10s Vertical Hop) Impulse Oscillometry Incremental Step Test IPAQ - International Physical Activity Questionnaire (versions: IPAQ-sv; IPAQ-SF; IPAQ-WS - IPAQ-Walking Section; IPAQ-SB - IPAQ-Sedentary Behavior; IPAQ-A - IPAQ-Adolescents) LCI - lung Clearance Index LCQ - Leicester Cough Questionnaire LRC -Lipid Research Clinics Questionnaire Modified Shwachman MPI - Multidimensional Pain Inventory MRI - Magnetic Resonance Imaging (versions: 2D MRI; 3D MRI; pMRI; sMRI; vMRI; rsMRI) MSAS CF - Memorial Symptom Assessment Scale for Adults with Cystic Fibrosis MSWT - Modified Shuttle Walk Test NIH score - National Institutes of Health score Nocturnal cough count
NPD Scoring system - Nasal potential difference Scoring system PedsQL-GI - Pediatric Quality of Life Inventory Gastrointestinal Symptoms module PLC - Quality of life profile for Chronic Diseases PowerSTS - 1-minute sit-to-stand power index PQLI - Palliative Care Quality of Life Questionnaire PQLS - Pulmonary-Specific Quality of Life Scale PRAGMA-CT - Perth-Rotterdam Annotated Grid Morphometric Analysis for CF QLSI - Quality of Life Systemic Inventory (versions: QLSI-C; QLSI-C-e-version) QWB - Quality of Well-Being Scale (QWB-IA - QWB-interview-Administered) ReS-CF - Respiratory symptoms in CF tool RVRTC - Raised volume rapid thoracic technique Sense-seeking and sense-making tool 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) SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP; SIP/ALS-19) SOBQ - Shortness of Breath Questionnaire Spirometry Sputum Rheology SSS - Symptom Score System STS - Sit-to-stand test (versions: 5STS or STS-5; 5times STS/FTSTS; 20sSTS; 30sSTS; 60sSTS; STST1 - 1 min STS; 2minSTS; 3minSTS; 10times STS or STS-10; STS-60; STS-30) Sweat chloride VJ test - Vertical Jump test Wisconsin score WPAI - Work Productivity and Activity Impairment questionnaire (versions: WPAI-AS - WPAI-Allergy Specific; WPAI-ChHD; WPAI-Chorinc Hand Dermatitis; WPAI-Lupus; WPAI-SpA - WPAI-spondyloarthritis; WPAI-UC - WPAI-Ulcerative Colitis)
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