COSMIN database

Patient-reported outcome measures in psoriasis: the good, the bad and the missing!

Authors:
Kitchen, H., Cordingley, L., Young, H., Griffiths, C. E., and Bundy, C.
Abstract:
As a long-term condition, psoriasis demands significant personal and professional input for optimal self-management. Low levels of well-being and high levels of psychological distress in patients with psoriasis are associated with reduced resources for self-care. Patient-reported outcome (PRO) measures can be used to assess physical, social and psychological functioning in order to guide treatment. In this article, we systematically reviewed the development and validation of existing PRO measures. PubMed (Medline), PsycINFO and CINAHL were searched systematically using predefined search terms. The search was limited to articles in the English language relating to human subjects. Articles were selected for full review through explicit inclusion/exclusion criteria. PRO measures were critically reviewed in accordance with the published guidelines and theory on the development and validation of PROs. The search identified 967 abstracts; 71 of these articles met the criteria for full review. In these 71 articles, 45 PRO measures were found: 16 were specific to psoriasis, 21 assessed other dermatological conditions and eight were developed for generic nondermatological health conditions. The review revealed several limitations of the existing measures, including: (i) a composite structure assessing multiple, poorly-defined concepts; (ii) a lack of evidence for face and content validity; (iii) a failure to include both patient and clinician perspectives and requirements and (iv) a lack of evidence regarding the feasibility and acceptability for patients and physicians. No single PRO measure with adequate evidence of validity, reliability and sensitivity to change captures patient well-being in psoriasis. A valid, sensitive, specific and acceptable PRO that assesses the full impact of psoriasis on well-being is needed for the comprehensive clinical management of psoriasis.
DOI:
10.1111/bjd.13691
URL:
https://www.ncbi.nlm.nih.gov/pubmed/25677764
Journal:
Br J Dermatol
issn:
1365-2133 (Electronic)
Publication year:
2015
pages:
1210-21
Biological and physiological variables:
Biological and physiological variables
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
Age:
Adults (18-65)
Disease:
Diseases of and symptoms related to the skin and subcutaneous tissue
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales
7 - Observations
Instrument:
Acne-QoL - Acne-Specific Quality of Life Instrument
Acne-QOLI - Acne Quality of Life Index
Acne treatment adherence tool
Adjustment to chronic skin diseases questionnaire
BIPQ - Brief Illness Perception Questionnaire   Logozuyd
CALIPSO - Comprehensive Appraisal of Life Impact of PSOriasis
DermaSat - Satisfaction with dermatological treatment of hand eczema
DLQI - Dermatology Life Quality Index   Proqolid blue crop
DQOLS - Dermatology Quality of Life Scales
DSQL - Dermatology Specific Quality of Life
EQ-5D - EuroQoL-5 Dimensions   Logozuyd
FLQA - Freiburg Life Quality Assessment
HAQ-skin - Health Assessment Questionnaire skin
Impact of Chronic Skin Disease on Daily Life
IPSO - Impact of Psoriasis Questionnaire
Itch questionnaire for Atopic Dermatitis (unnamed, author unknown)
KMPI - Koo Menter Psoriasis Instrument
NPF-PS - National Psoriasis Foundation Psoriasis Score System
NPQ10 - Nail Psoriasis Questionnaire
PBI - Patient Benefit Index
PDI - Psoriasis Disability Index
PEER - Psoriasis Empowerment Enquiry in Routine Practice
PLSI - Psoriasis Life Stress Inventory
PQLQ - Psoriasis Quality of Life Questionnaire
PREPI - Patient Report of Extent of Psoriasis Involvement
PRISM - Pictorial Representation of Illness and Self Measure Measure
Pruritus assessment tool for psoriasis
PsAQoL - Psoriatic Arthritis Quality of Life
PSI - Psoriasis Symptom Inventory
PSOR-IQoL - Psoriasis Index of Quality of Life
PSS-AD - Psychosomatic Scale for Atopic Dermatitis
PSWQ - Penn State Worry Questionnaire
QES - Questionnaire on Experience with Skin Complaints
QoLIAD - Quality of Life Index for Atopic Dermatitis
Rosa-QOL - Rosacea Quality of Life
SAPASI - Self Administered Psoriasis Area Severity Index
SaSPI - Self-assessed Simplified Psoriasis Index
Scalpdex - quality of life for scalp dermatology
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]   Proqolid blue crop | Logozuyd | also see: database.cosmin.nl
SF-36v2 - Short Form 36 version 2
SIP - Sickness Impact Profile   Logozuyd
Skindex   Proqolid blue crop
Skindex-16
Skindex-17
Skindex-29   Logozuyd
Skindex-61
SPI - Salford Psoriasis Index
TSQM version 1.4 - Treatment Satisfaction Questionnaire for Medication
VAS-itch - Visual analogue scale (VAS) measuring the itch intensity
WHOQOL-100 - World Health Organization Quality Of Life Assessment Instrument 100 items
WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire [alias: WHO-QOL BREF]   Logozuyd