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Table 2 Pediatric PRO Instruments

From: Systematic literature review and assessment of patient-reported outcome instruments in sickle cell disease

    Psychometric Properties
Instrument Aim Items and Scoring Developed for SCD Patients Content Validity (SCD-specific) Internal Reliability (Cronbach’s α) Test-retest Reliability Construct Validity Responsiveness
Health-related Quality of Life
 PedsQL Generic Core Scales [28, 34, 36] To assess HRQL of children as young as 2 years (proxy report) and children as young as 5 years (self-report) 23 items rated on a 5-point Likert scale; higher scores indicate more problems No Unclear Strong
(0.80–0.90 parent-report; 0.93 self-report)
Unclear Unclear Unclear
 PedsQL SCD Module [36] To assess quality of life that is specific to assessing the health issues relevant to pediatric patients with SCD 43 items rated by a 5-point Likert scale; higher scores represent better quality of life Yes Unclear Strong
(0.95–0.97)
Unclear Unclear Unclear
 PedsQL Multidimensional Fatigue Scale [35, 36] To measure fatigue experienced during the past 1 month across a variety of pediatric populations 18 items rated on a 5-point Likert scale; higher scores represent better quality of life No Unclear Strong
(0.95 parent-report; 0.90 self-report)
Unclear Unclear Unclear
 Patient Reported Outcomes Measurement Information System (PROMIS) [29] To measure a pediatric patient’s health attributes of depressive symptoms over the previous 7 days 156 items over 8 domains (physical functioning mobility, physical functioning upper extremity, pain interference, fatigue, depressive symptoms, anxiety, peer relationships, and anger) rated on a 5-point Likert scale; higher scores signify worse severity for depression, anxiety, anger, fatigue, and pain interference and better functioning for physical functioning mobility, physical functioning upper extremity, and peer relationships No Unclear Unclear Unclear Good Unclear
Pain
 Faces Pain Scale-Revised (FPS-R) [31] To assess pain intensity in pediatric populations experiencing acute pain 6 faces depicting different levels of increasing pain intensity No Good Unclear Unclear Unclear Unclear
 Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y) [26] To assess the pain burden among children and adolescents with SCD over the previous month 7 items ranked on a 5-point Likert scale; higher scores indicate higher pain burden Yes Good Strong
(0.89)
Good Good Unclear
Coping, Self-efficacy
 Coping Strategy Questionnaire (CSQ) [30] To measure coping with pain in adults, adolescents, and young children 13 subscales, each with 6 items rated on a 7-point Likert-type scale; higher scores indicate greater pain No Unclear Unclear Unclear Unclear Unclear
 Sickle Cell Self-efficacy Scale (SCSES) [27] To assess adults and adolescent’s self-appraisals of their ability to engage in daily functional activities despite having SCD 9 items rated on a 5-point Likert scale; higher scores indicate greater self-efficacy Yes Unclear Strong
(0.87)
Unclear Weak Unclear
Functioning
 Youth Acute Pain Functional Ability Questionnaire (YAPFAQ) [37] To assess physical function and functional recovery in youth undergoing acute and procedural pain 40 items rated on a 5-point Likert scale; higher scores indicate greater difficulty performing functional activities No Unclear Strong
(0.92)
Unclear Unclear Unclear
Family Impact
 Psychosocial Assessment Tool 2.0 (PAT2.0) [32] To measure psychosocial risk in families of a child newly diagnosed with cancer 7 subscales; higher scores indicate many stressors No Unclear Strong
(0.84)
Unclear Unclear Unclear
  1. Note: “Weak” indicates poor performance (e.g., evidence of poor reliability) or a weakness that should be considered within the trial design (e.g., requires significant input by research team to administer, or no availability of language translations); “Good” indicates adequate or moderate performance (e.g., adequate reliability) or only mild limitations (e.g., availability of a small number of language translations, absence of evidence in a minority of adult patients (e.g., older adults)); “Strong” indicates excellent performance on all reported indicators (e.g., all subscales report excellent reliability; evidence) or notable advantages for use within a trial (e.g., freely accessible, wide range of language translations); “Unclear” indicates where no or insufficient evidence was reported to assess, or where evidence reported was conflicting (e.g., some subscales show excellent reliability while others did not)
  2. Abbreviations: HRQL health-related quality of life, SCD sickle cell diseas