COSMIN database

Patient-reported outcome measures in amblyopia and strabismus: a systematic review

Authors:
Kumaran, S. E., Khadka, J., Baker, R., and Pesudovs, K.
Abstract:
BACKGROUND: Many patient-reported outcome measures (PROMs) have been developed and/or used to measure the impact of amblyopia and strabismus on quality of life (QoL). Identifying the one with superior quality is important for evaluating the effectiveness of novel therapy for amblyopia and for directing improved clinical decision-making in adults considering strabismic surgery. Therefore, the aim of this review is to identify all PROMs previously developed/used to study the impact of amblyopia and/or strabismus on QoL and to appraise the quality and comprehensiveness of content of the disease-specific instruments.

METHODS: A systematic search was carried out in the electronic databases of PubMed, Cochrane, Web of Science and PsycINFO. The quality of content and measurement properties of all the disease-specific instruments were assessed using established quality standards. Further, the content of the instruments were examined for comprehensiveness by categorising each item across the eight ophthalmic QoL domains (activity limitation, concerns, emotional well-being, social well-being, economic, convenience, symptoms and mobility).

RESULTS: Seventy-one PROMs were identified, out of which 32 were amblyopia- and/or strabismus-specific. Out of all the disease-specific instruments, just four have been subjected to modern psychometric tests and only the adult strabismus questionnaire (AS-20) demonstrated good measurement properties. Most of the amblyopia-specific instruments measured the impact of the treatment of amblyopia on children, while most of the strabismus-specific instruments measured concerns related to appearance and treatment outcome in adults. All instruments have gaps in their content and failed to address QoL comprehensively.

CONCLUSION: All the existing amblyopia- and/or strabismus-specific instruments fall short of desired quality and/or comprehensiveness of content. The review identifies the need for developing an instrument with superior quality and discusses potential directions of future research.
DOI:
10.1111/cxo.12553
URL:
https://onlinelibrary.wiley.com/doi/pdf/10.1111/cxo.12553
Journal:
Clin Exp Optom
issn:
0816-4622
Publication year:
2017
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
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)
Children (0-18)
Seniors (65+)
Disease:
Diseases of and symptoms related to the eye and adnexa
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
46-item QoL questionnaire
8-item QoL instrument
Amblyopia Survey
AS-20 - Adult Strabismus Quality of Life questionnaire
ASQE (or A&SQ) - Amblyopia and Strabismus Questionnaire
ATI - Amblyopia Treatment Index
Behaviour Assessment System for Children
Bristol Social Adjustment guides
CARSAL - Salience of Appearance scale
CARVAL - Valence of Appearance scale
CATQoL - Child Amblyopia Treatment Questionnaire
CBCL - Child Behavior Checklist   [see: proqolid, ZUYD (NL)]
CDI - Children's Depression Inventory
CES-D-R - Center for Epidemiologic Studies-Depression Scale-Revised
Child’s Balance Performance in Daily
CVLS - Children’s Vision for Living Scale
DAS-24 - Derriford Appearance Scale 24
DAS-59 - Derriford Appearance Scale 59
Disability Questionnaire
DS-14 distressed personality questionnaire
Effect of Diplopia Questionnaire
Emotional Impact of Amblyopia Treatment Questionnaire
Exotropia Symptom Questionnaire
Expectations of Strabismus Surgery Questionnaire
FNE - Fear of Negative Evaluation (FNE) scale
HADS - Hospital Anxiety and Depression Scale   [see: ZUYD (NL)]
HSCL - Hopkins Symptom Checklist
Index of ADL
Instrumental ADL
Iowa-Netherlands Comparison Orientation Scale
IPQ - Illness Perceptions Questionnaire (ALSO IPQ-R - IPQ revised)
IXTQ - Intermittent Exotropia Questionnaire
LSAS - Liebowitz social anxiety scale
Modified RAND Health Insurance Study QoL Instrument
MSPSS - Multidimensional Scale of Perceived Social Support
NEI VFQ-25 - 25-item National Eye Institute Visual Function Questionnaire
OCQ - Occlusion Patch Comfort Questionnaire
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales
Perceived Visibility of Strabismus
Perspectives Questionnaire
PFC - physical function composite (based on SF-36, SF-12, or SF-8)
Physical Appearance Discrepancy questionnaire
Pictorial Scale of Perceived Competence and Social Acceptance for Young Children
PIQ - Psychological Impact Questionnaire
Post Strabismus Surgery Symptom Questionnaire
PPQ - Perceived Psychosocial Questionnaire
PSI - Perceived Stress Index
PSQ - Patching Success Questionnaire
Psychosocial effects of strabismus pre- and post-operative questionnaire
Psychosocial Experience Questionnaire
QoL questionnaire for children with anisometropic amblyopia
Revised Rutter Parent Scale for Preschool Children
RG - Repertory Grid
RSES - Rosenberg Self-Esteem Scale
Rutter scale
Satisfaction of Surgical Outcome
SCARED-R - Screen for Child Anxiety Related Emotional Disorders–Revised
SCL-90-R - Symptom Checklist 90-Revised
Screening for Anxiety
Screening for Depression – US Preventive Services Task Force and National Institute for Health and Care Excellence
SDS - Sheehan Disability Scale
SF-20 - MOS short-form general health survey 20 item
SF-36 - 36-item Short Form Health Survey   [see: proqolid, ZUYD (NL)]
SF-8 - MOS Short Form 8 items
SG - Standard Gamble
Socio-Professional Integration Questionnaire
SPPC - Self-Perception Profile for Children
Strabismus Survey
Treatment Representations Inventory
TTO - Time Trade-Off
VAS - Visual Analogue Scale   [see: ZUYD (NL)]
VF-14 Visual Function Index
Vision Function Scale
WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (See also: WHO-QOL BREF)   [see: ZUYD (NL)]