Table 1 Adult PRO instruments
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 |
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 |