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Table 1 Adult 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
Coping, Self-efficacy, Self-esteem
 Multidimensional Health Locus of Control Scale (MHLC) [18] To assess respondents’ beliefs about whether their health status is determined by their own actions, the actions of other individuals, or is determined by fate or chance 18 items across 3 subscales (internal, chance, and external) rated on a 6-point Likert scale; scoring system not reported No Unclear Strong
(0.82)
Unclear Unclear Unclear
 Rosenberg’s Self-esteem Scale (SES) [18] To measure global self-esteem 10 items scored on a 4-point Likert scale; higher scores correspond to higher self-esteem No Unclear Strong
(0.85)
Unclear Unclear Unclear
 Sense of Mastery Scale (SOM) [18] To assess general sense of life control and mastery 7-item instrument on a 4-point Likert scale; scoring system not reported No Unclear Good
(0.77)
Unclear Unclear Unclear
 Sickle Cell Disease Self-efficacy Scale (SCD-SES) [18, 22] To assess respondent’s ability to function on a day-to-day basis and to manage SCD symptomatology 9 items ranked on a 5-point Likert scale; higher scores indicate greater self-efficacy Yes Unclear Strong
(0.80–0.89)
Unclear Unclear Unclear
 Sickle Cell Transition Intervention Programs Skills Checklists [25] To assess the transition readiness of patients with SCD 5 knowledge skills sets (medical, educational/vocational, health benefits, social, independent) and 3 psychological checklists (self-efficacy, sickle cell stress, feelings about transition); scoring system not reported Yes Good Good
(0.46–0.86)
Unclear Unclear Unclear
 Simple Rathus Assertiveness Scale-Short Form (SRAS-SF) [21] To measure a patient’s assertiveness in the health care setting 19 items ranked on a 6-point Likert scale; higher scores indicate higher levels of assertiveness No Unclear Strong
(0.85)
Unclear Unclear Unclear
Pain
 PAINReportIt [23] To help clinicians better understand the experience and etiology of pain in their patients Patient marks areas of pain on a body outline drawing, circles words to describe pain quality and pattern, and writes narrative text to indicate activities that increase or reduce the pain, and selects pain severity indicators; scoring system not reported No Unclear Unclear Unclear Unclear Unclear
 Sickle Cell Disease Pain Burden Interview-Youtha (ages 7–21) (SCPBI-Y) [26] To assess the impact of pain on physical, social/community, and emotional aspects of daily function 7 items ranked on a 5-point Likert scale; higher scores indicate higher pain burden Yes Good Strong
(0.89)
Good Good Unclear
 West Haven-Yale Multidimensional Pain Inventory (WHYMPI) [17] To assess patients’ ability to cope with chronic pain 52 items ranked on a 7-point Likert scale; scoring system not reported No Unclear Good
(0.64–0.86)
Unclear Unclear Unclear
Depression
 Beck Depression Inventory-Fast Screen (BDI-FS) [20] To measure symptoms of depression 7 items ranked on a 4-point Likert scale, indicating frequency of symptom experienced over previous week; higher scores indicate more depressive symptoms No Unclear Strong
(0.81)
Unclear Unclear Unclear
Family Impact
 Parental Bonding Instrument (PBI) – Maternal Version [22] To assess adults’ perceptions of maternal overprotection and care prior to the age of 16 years 25 items; score system not reported No Unclear Strong
(0.83–0.89)
Unclear Weak Unclear
Quality of Life
 Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me) [24] To assess HRQL in adult patients with SCD 4 item sets (cognitive, emotional, social functioning, and physical impact) and 5 additional items assessing pain episode severity and frequency; scoring system not reported Yes Strong Strong
(0.92–0.96)
Unclear Good Unclear
Spirituality
 Spiritual Well-being Scale [17] To assess the general spirituality pertaining to existential and religious well-being 20 items scored on a 6-point Likert scale; scoring system not reported No Unclear Strong
(0.82–0.88)
Unclear Unclear Unclear
Stigma
 Sickle Cell Disease Health-related Stigma Scale (SCD-HRSS) [20] To assess the stigma patients with SCD perceive from the general public, physicians, and family 30 items ranked on a 6-point Likert scale; higher scores indicate higher perceived stigma No Unclear Strong
(0.84)
Unclear Unclear Unclear
Treatment Satisfaction
 Adult Sickle Cell Quality of Life Measurement Quality of Care (ASCQ-Me QOC) [19] To measure patients’ perceived quality of received health care services 27 items on four domains (access, provider communication, ED care, and ED pain treatment); scoring system not reported Yes Good Good
(0.70–0.86)
Unclear Unclear Unclear
  1. aAs this instrument includes young adults up to age 21 years, it was included in both the Adult and Pediatric categories
  2. 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)
  3. Abbreviations: HRQL health-related quality of life, SCD sickle cell disease