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Patient-reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review
Authors:
Kinahan, J. Y., Graham, J. M. I., Hébert, Y. V., Sampson, M., O'Hearn, K., and Klaassen, R. J.
Abstract:
Patient-reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without influence by health care professionals. As such, PROMs show subjective health experiences, enhance the clinical information available to providers, and inform clinical action. The objective of this systematic review is to identify and list which validated PROMs have been used to monitor health-related quality of life in pediatric patients with nonmalignant hematology (hemophilia, immune thrombocytopenia, sickle cell disease, and thalassemia). Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that validated or used PROMs as an outcome measure in the 4 disease groups. Overall, 209 articles met the inclusion criteria, identifying 113 PROMs. Of the 113 identified PROMs, 95 are generic and can be used in multiple disease groups. The Pediatric Quality of Life Generic Core Scales was the most frequently used generic PROM (68 studies). The 18 remaining PROMs were disease specific. The results of this review, together with the COSMIN tool for selecting outcome measures, will allow clinicians to evaluate the PROMs that are best suited to their patient population. In addition, the focus groups are currently being conducted with patients, parents, and clinicians to determine the optimal use of PROMs in the clinical environment.
DOI:
10.1097/mph.0000000000001984
Journal:
J Pediatr Hematol Oncol
issn:
1077-4114
Publication year:
2020
pages:
Symptom status:
Cognitive/mental state
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Children (0-18)
Disease:
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
Activity Scale for Kids (versions: e-version) BAI - Beck Anxiety Inventory (versions: BAI-Youth) BASC - Behavior Assessment Scale/System for Children (versions: BASC-1; BASC-2; BASC-3; BASC‐SRP - BASC-Self‐Report of Personality; BASC-TRS = BASC-Teacher Rating Scale) BDI - Beck Depression Inventory (versions: mBDI; BDI-Y; BDI-SF) BRIEF - Behaviour Rating Inventory of Executive Function (versions: BRIEF-Adult; BRIEF-C; BRIEF-SR; BRIEF-2; BRIEF-parent; BRIEF-teachers; BRIEF-personal; BRIEF-preschool) CADS - Children's Anxiety and Depression Scale (versions: RCADS - Revised CADS; CADS-r) CBCL - Child Behavior Checklist (versions: CBCL-2; CBCL-3; CBCL-ADHD; CBCL-teacher rated; CBCL-Y - CBCL Youth; CBCL/6-18) CBQ - Children’s Behavior Questionnaire CDI - Children's Depression Inventory (versions: SCDI; CDI-SF) CHO-KLAT - Canadian Haemophilia Outcomes–Kids Life Assessment Tool CHQ-CF - Child Health Questionnaire-Child Form (versions: CHQ-CF45; CHQ-CF87; CHQ-CF-BREF) CHQ - Child Health Questionnaire (versions: CHQ-SF; CHQ50) CHQ-PF - Child Health Questionnaire – Parent Form (versions: CHQ-PF27; CHQ-PF28; CHQ-PF50) COPE - Coping Orientation to Problems Experienced Inventory (versions: A-COPE - Adolscent COPE; Kid-COPE; Brief-COPE - SEE Brief-COPE) CPQ - Child Perception Questionnaire (versions: CPQ 6-7; CPQ 8-10; CPQ 11-14; CPQ 11-14 Short) CSHQ - Children’s Sleep Habits Questionnaire (versions: CSHQ-Infant) CSQ - Coping Strategies Questionnaire (versions: CSQ-1; CSQ-2; CSQ-C; CSQ-R) EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) 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) FACES II - Family Adaptability and Cohesion Evaluation Scales II (versions: FACES III; FACES IV) FDI - Functional Disability Inventory FES - Family Environment Scale GAD - Generalised Anxiety Disorder (versions: GAD-7) GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-7; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36) HAEMO-QOL - Hemophilia Quality of Life Questionnaire (versions: HAEMO-QOL-A; HAEMO-QoL-SF) Hep-Test-Q IOF - Impact on Family Scale [Alias: IFS] (versions: IOF-R) ITP-QOL - Idiopathic Thrombocytopenic Purpura Quality of Life Questionnaire (also: Immune Thrombocytopenic Purpura QOL) (versions: Kid's ITP Tool) KINDL (versions: KINDL-R; KINDL-R-Diabetes; Kiddy Kindl - 4-6 years; Kiddo Kindl - 14-17 years; Kid Kindl - 7-13 years; Kid/Kiddo KINDL - 7-17 years; Kiddy-KINDL CQ - Childrens' Questionnaire; Kiddy-KINDL PQ - Parents' Questionnaire; KINDL CATSCREEN) PAT - Psychosocial Assessment Tool (versions: PAT 2.0; PAT-D; PAT2.0_GEN AYA) PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales (versions: PedsQL 4.0 SF15; PedsQL 4.0 TODDLER; PedsQL 4.0 YOUNG CHILD; PedsQL 4.0 CHILD; PedsQL 4.0 TEENAGER; PedsQL 4.0 SF15 Toddler/Young Child/Child/Teen) PedsQL FIM - Pediatric Quality of Life Inventory Family Impact Module (versions: PedsQL 2.0 FIM) PedsQL-MFS - Pediatric Quality of Life Inventory-Multidimensional Fatigue Scale PedsQL-SCD - Pediatric Quality of Life Inventory-Sickle Cell Disease module 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) PIP - Pediatric Inventory for Parents (versions: PIP-SF) PROMIS Global Health - Patient-Reported Outcomes Measurement Information System Global Health (versions: PROMIS GSF; PROMIS GH-10) RPWB - Ryffs Scales of Psychological Well-being (84, 54, or 18 items) SCPBI-Y - Sickle Cell Disease Pain Burden Interview-Youth (ages 7–21) SCSES - Sickle Cell Self-efficacy Scale SDQ - Strengths and Difficulties Questionnaire (versions: SDQ Children and Adolescents; SDQ Youth) 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] SPP - Self-Perception Profile (versions: SPPC - SPP Children; SPPA - SPP Adults; SPPA - SPP Adolscents) STAIC - State Trait Anxiety Inventory for Children TNO-AZL/DUX-25 - Dutch Children TNO-AZL Quality of Life Questionnaire Transfusion-Dependent QoL Questionnaire Transition Intervention Program Readiness for Transition VERITAS-Prn VERITAS-Pro WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis)
