Patient-reported outcome measures for retinoblastoma: a scoping review

Janic, Ana; Bowden, Sylvie; Levy, Sarah; Stinson, Jennifer; Dimaras, Helen

doi:10.1186/s41687-020-00232-7

Journal of Patient-Reported Outcomes

Table 1 Quality analysis of all identified PROMs (n = 100). The COSMIN ‘good property checklist’ was applied on 100 PROMs, across 7 measurement properties stratified by construct. PROMs were ranked highest score of sufficient quality to lowest, within a construct. ‘+’ indicates a score of sufficient quality, ‘?’ indicates that the specific measurement property was not reported on, and ‘-’ indicates insufficient quality

From: Patient-reported outcome measures for retinoblastoma: a scoping review

PROM	COSMIN Good Measurement Properties Checklist
	Overall Content Validity		Internal Structure		Remaining Measurement Properties
	PROM Development	Content Validity	Structural Validity	Internal Consistency	Reliability	Measurement Error	Hypotheses testing for construct validity
VRQoL
Vision Related Quality of Life (VQoL_CYP)	+	+	?	+	–	?	+
Impact of Vision Impairment for Children (IVI_C)	+	+	?	+	–	?	+
National Eye Institute-Visual Function Questionnaire (NEI-VFQ)	?	+	?	+	+	?	+
Effects of Youngsters’ Eyesight on Quality of Life (EYE-Q)	+	–	?	+	+	?	+
Childrens Visual Function Questionnaire (CVFQ)	–	–	?	–	–	?	?
FV
Functional Vision Quality of Life (FVQ_CYP)	+	+	?	+	?	?	+
Cardiff Visual Ability Questionnaire for Children (CVAQC)	+	+	–	+	+	?	?
LV Prasad–Functional Vision Questionnaire (LVP-FVQ II)	+	+	?	?	+	?	?
Visual Analogue Scale	?	?	?	?	+	?	?
Visual Function Index-14	–	–	?	+	?	?	?
HRQoL
Patient Reported Outcome Measure Information System (PROMIS) Pediatric Profile-25	+	+	+	+	?	?	+
Pediatric Rhinoconjunctivitis Quality of Life Questionnaire (PRQLQ)	+	+	?	+	+	?	+
Early-Onset Scoliosis Questionnaire (EOSQ)	+	+	?	+	+	?	+
Adult Strabismus-20 (AS-20)	+	+	?	+	+	?	?
Amblyopia and Strabismus Questionnaire (A&SQ)	+	+	?	+	+	?	?
Bt-Dux	+	+	?	+	?	?	+
Minneapolis–Manchester Quality of Life (MMQL) Questionnaire	+	+	?	+	–	?	+
KIDSCREEN 52	+	+	?	+	–	?	+
Child Health Ratings Inventories (CHRIs - HSCT)	+	+	?	+	–	?	+
Lee Chronic Graft Versus Host Disease (Lee-cGVHD)	+	+	?	+	–	?	+
Child Health and Illness Profle (CHIP)	+	+	?	+	–	?	+
Quality of Life in Children with Vernal Keratoconjunctivitis (QUICK)	+	+	?	+	–	?	+
Intermittent Exotropia Questionnaire (ITXQ)	+	+	–	+	+	?	?
EuroQol 5-Dimension Youth (EQ-5D-Y)	+	+	?	?	+	?	+
Royal Marsden Hospital Pediatric Oncology Quality of Life Questionnaire (RMH-PQLQ)	+	+	?	+	?	?	?
Nasolacrimal Duct Obstruction (NLDO) Questionnaire	+	+	?	+	?	?	?
The Cancer Needs Questionnaire-Young People (CNQYP)	+	+	?	+	–	?	?
Quality of Life for Children with Cancer (QOLCC)	+	+	–	+	?	?	?
Children’s Amblyopia Treatment Quality of Life Questionnaire (CAT-QoL)	+	+	–	+	?	?	–
Health Utilities Index (HUI)	+	+	?	?	?	?	+
Coddington Life Events Questionnaire (CLES)	+	+	?	?	–	?	+
Perceived Illness Experience (PIES)	+	+	?	–	?	?	+
TNO-AZL Preschool Children Quality of Life (TAPQOL)	+	+	?	–	–	?	+
Pediatric Quality of Life Inventory—Cancer Module (PedsQL Cancer)	+	?	?	+	+	?	?
MPQOLQ Miami Pediatric Quality of Life Questionnaire	+	?	?	+	+	?	?
M.D. Anderson Symptom Inventory	–	–	?	+	+	?	+
PainDETECT	+	–	?	+	?	?	?
World Health Organisation Quality of Life assessment (WHOQoL) BREF	–	+	–	+	?	?	+
The Hope Scale	–	+	?	+	?	?	?
The Adolescent Quality of Life Questionnaire	–	+	?	?	?	?	+
KINDL	?	?	?	+	+	?	?
Medical Outcomes Study Short-Form 36 (SF-36)	–	–	?	+	?	?	+
Infant Toddler Quality of Life Inventory (ITQOL)	–	–	?	+	?	?	+
Functional Assessment of Cancer Therapy - General (FACT - G)	?	?	?	+	?	?	+
16-Dimensional Health-related Measure (16D)	–	+	?	?	?	?	?
Child Health Questionnaire (CHQ)	?	?	?	+	?	?	?
European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)	?	?	–	?	?	?	+
Pediatrics Outcomes Data Collection Instrument (PODCI)	?	?	–	?	?	?	?
Behavioral, Affective, and Somatic Experiences Scale (BASES)	–	–	?	+	?	?	?
Scoliosis Research Society [SRS]-30	?	?	?	–	?	?	?
Pediatric Quality of Life (PEDQOL)	–	–	?	–	?	?	?
Functional Ability
Toronto Extremity Salvage Score (TESS)	+	+	?	+	+	?	+
DISABKIDS	+	+	?	+	?	?	+
The Activities Scale for Kids Performance Version (ASKp)	+	–	?	?	+	?	+
Symptom Assessment
Amblyopia Treatment Index (ATI)	+	+	?	+	+	?	?
Chronic Otitis Media Questionnaire-12 (COMQ-12)	–	+	+	+	–	?	+
Oral Health Impact Profile (OHIP-14)	–	+	?	+	–	?	+
Hipdisability Osteoarthritis Outcome Score (HOOS)	+	–	?	+	+	?	+
The Cancer and Treatment Distress (CTXD)	–	+	?	+	?	?	?
Children’s Vision for Living Scale (CVLS)	+	+	–	+	?	?	?
Oral Mucositis Daily Questionnaire (OMDQ)	–	+	?	–	?	?	+
Brief Fatigue Inventory	?	?	?	+	+	?	+
Impact of Events Scale-Revised (IES-R)	?	?	–	+	+	?	+
Memorial Symptom Assessment Scale	–	+	?	+	?	?	+
Fatigue Symptom Inventory	–	+	?	+	?	?	+
Adolescent Pediatric Pain Tool (APPT)	+	–	?	+	?	?	+
Knee-injury osteoarthritis outcome score (KOOS)	+	–	?	?	+	?	+
Hearing Measurement Scale	–	+	?	?	?	?	?
Short Form McGill Pain Questionnaire	–	+	–	+	?	?	?
Expectations of Strabismus Surgery Questionnaire	–	+	?	?	?	?	?
Kessler-6 Two Factor	–	–	?	+	?	?	+
Colored Analogue Scale	–	–	?	?	+	?	+
Edmonton Symptom Assessment Scale (ESAS)	?	?	?	+	?	?	?
Wong-Baker FACES Pain Rating Scale	?	?	?	?	?	?	+
Symptom Checklist 90 R	–	–	?	?	?	?	+
Brief Pain Inventory Short Form	–	–	?	?	?	?	?
Emotional Impact of Amblyopia Questionnaire (EIAQ)	–	–	?	?	?	?	?
Psychological Impact
Derriford Appearance Scale (DAS)	+	+	?	+	+	?	+
Multidimensional Scale of Perceived Social Support (MSPSS)	?	+	?	+	+	?	+
Hospital Anxiety and Depression Scale (HADS)	–	+	+	+	?	?	+
Screen for Child Anxiety Related Emotional Disorders (SCARED)	–	+	?	+	+	?	+
Zung Self-Rating Depression Scale	+	?	?	+	?	?	+
Beck Anxiety Inventory	–	+	–	+	?	?	+
Hopkins Symptom Check List (HSCL)	–	–	?	+	+	?	+
Fear of Negative Evaluation (FNE)	–	–	?	+	+	?	+
Liebowitz Social Anxiety Scale	–	–	–	+	+	?	+
Psychological Impact Questionnaire (PIQ)	+	+	?	?	?	?	?
Childrens Manifest Anxiety Scale (CMAS)	–	+	?	+	?	?	?
Hamilton Anxiety Rating Scale	?	?	–	+	?	?	+
Distressed Personality Questionnaire (DS-14)	?	?	?	+	–	?	+
Self-Perception Profile for Children (SPPC)	?	?	–	+	–	?	+
Behavioural Assessment System for Children (BAS-C)	–	–	+	+	?	?	–
Social Anxiety Scale for Children-Revised	–	–	?	+	?	?	+
Mental Health Inventory (MHI)	–	–	?	+	?	?	+
Center for Epidemiologic Studies Depression Scale – Revised (CESD-R)	–	–	–	+	?	?	+
Perceived Psychosocial Questionnaire (PPQ)	+	–	?	?	?	?	?
Children’s Depression Inventory (CDI)	?	?	?	+	–	?	–
State-Trait Anxiety Inventory	–	–	?	+	–	?	?
Pediatric Camp Outcome Measure (PCOM)	–	–	?	+	?	?	?
The Psychosocial Assessment Tool (PAT)	–	–	?	–	?	?	+
Faces Anxiety Scale	–	–	?	?	?	?	?

Back to article page