Introduction
Sickle cell disease (SCD) profoundly affects patients’ quality of life, necessitating reliable tools to assess its impact. Developed by Marsha J. Treadwell, Kathryn Hassell, and colleagues in 2014, the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) is a robust, patient-centered tool designed to evaluate health-related quality of life (HRQoL) in adults with SCD. With over 500 citations on Google Scholar, its widespread use underscores its value in clinical and research settings.
This article explores ASCQ-Me’s features, applications, and clinical utility, providing researchers and clinicians with actionable insights to enhance SCD management.
Key Features of the ASCQ-Me
Purpose and Use of the ASCQ-Me
ASCQ-Me is designed to assess the physical, emotional, and social impacts of SCD on adults and capture health-related quality of life (HRQoL). Clinicians use it to screen for disability, monitor treatment outcomes, and plan interventions. Meanwhile, researchers employ it in clinical trials and epidemiological studies to advance evidence-based SCD care. For example, its focus on patient-reported outcomes ensures tailored treatment strategies, making it indispensable in hematology.
Target Population
Validated for adults aged 18 and older, ASCQ-Me targets:
- Young Adults (18–24 years)
- Middle-Aged Adults (25–44 years)
- Older Adults (45–64 years)
- Seniors (65+ years)
- Students (College/University)
- Parents
It is specifically designed for individuals diagnosed with SCD, making it ideal for neurology clinics, hematology research, and patient care settings.
Structure
ASCQ-Me comprises 34 items across six domains under Hematology and Quality of Life:
- Pain Impact (5 items): Assesses pain’s interference with daily activities.
- Emotional Impact (5 items): Evaluates emotional distress caused by SCD.
- Sleep Impact (5 items): Measures sleep quality disruptions.
- Social Functioning Impact (5 items): Gauges challenges in social roles.
- Stiffness Impact (5 items): Examines physical stiffness.
- Pain Episode Frequency (9 items): Tracks frequency and intensity of pain crises.
Each item uses a 5-point Likert scale, with options ranging from “Never” to “Always” or “Not at all” to “Very much“, ensuring comprehensive yet efficient data collection.
Scoring Method of the ASCQ-Me
The ASCQ-Me uses a Likert-type scale, with scores ranging from 0 to 170 (34 X 5). Higher scores indicate better quality of life. Domain-specific scores are calculated by summing relevant items. Although no universal cut-off scores exist; scores are interpreted relative to baseline assessments after conversing the raw scores to T-score, with 50 considered the average score. A 10-point change is considered clinically significant, guiding treatment adjustments and research analysis. For instance, a clinician might prioritize symptom management if pain domain scores decline significantly.
Administration Format and Time
ASCQ-Me is flexible, supporting multiple administration formats:
- Paper-based
- Digital (online)
- Mobile app
- In-person interviews
- Phone or video calls
It requires no specialized training, as it is self-administered, though clinicians may assist to ensure accuracy. Moreover, each ASCQ-Me short form (5–9 items) takes approximately 3–5 minutes to complete, and participants typically complete one or more forms depending on the study or clinical needs. With a full administration (all six short forms plus the pain episode history) requiring 10–15 minutes. This efficiency suits busy clinical settings and research protocols.
Applications of the ASCQ-Me
ASCQ-Me serves multiple purposes in clinical and research settings:
- Screening: Identifies patients with significant SCD-related disability, prompting timely interventions.
- Monitoring: Tracks changes in HRQoL over time, especially during clinical trials.
- Treatment Planning: Guides personalized therapy based on domain-specific scores.
- Research: Supports studies evaluating SCD interventions, contributing to evidence-based hematology.
For example, a clinician might use a low social functioning score to address social support needs, while researchers analyze pain episode trends to assess new therapies.
Languages and Availability
To support global accessibility, ASCQ-Me is available in multiple languages, including:
- Arabic
- English
- Spanish
- French
- German
- Italian
As well as Dutch, Romanian, Turkish and more. This multilingual availability enhances its utility in diverse clinical and research contexts.
Published by the American Institutes for Research (AIR) under contract with the National Heart, Lung, and Blood Institute (NHLBI), ASCQ-Me is free for non-commercial use, such as academic research, clinical care and educational purposes. However, commercial use requires a licensing agreement, and fees may apply, depending on the intended application (e.g., integration into commercial software or use in clinical trials by for-profit companies). For inquiries contact HealthMeasures (Administers ASCQ-Me distribution and support) at help@healthmeasures.net.
Reliability and Validity
ASCQ-Me demonstrates high reliability and validity, with Cronbach’s alpha ranging from 0.85 to 0.95 across its domains, indicating strong internal consistency. Validation studies, such as those by Treadwell et al. (2014) and Keller et al. (2014), confirm its robustness across diverse SCD populations. Furthermore, its sensitivity to changes in health status makes it a trusted tool for monitoring treatment efficacy.
- Psychometric analysis of the ACSQ-Me in a UK population: Study link
Limitations and Considerations
Despite its strengths, ASCQ-Me has a few limitations:
- Self-report measure: Respondents may be influenced by social desirability bias or personal interpretation.
- Cultural Bias: Some translations may require further validation to ensure accuracy across populations.
- Pain Focus: The questionnaire emphasizes pain-related impacts, potentially overlooking other SCD-related symptoms.
Other Versions and Related Questionnaires
Complementary tools include:
- PROMIS (Patient-Reported Outcomes Measurement Information System): Assesses general health outcomes.
- SF-36 (Short Form Health Survey): Measures overall HRQoL.
- EQ-5D (EuroQol Five-Dimensional Questionnaire): Evaluates general health status.
ASCQ-Me also has adapted versions:
- ASCQ-Me Short Form (10 items): A concise version for rapid assessment.
- ASCQ-Me Emotional Impact (Subscale): Focuses on emotional distress.
These versions offer flexibility for various research and clinical contexts.
Additional Resources
For further exploration, consider these resources:
- Original Validation Study: link.
- Another validation study: link.
- Psychometric analysis in a UK population: link.
- Access the ASCQ-ME user’s manual as PDF here.
- For inquiries, contact HealthMeasures (Administers ASCQ-Me distribution and support) at help@healthmeasures.net.
- For additional ASCQ-Me resources, consult HealthMeasures.
Frequently Asked Questions (FAQ)
- Who can use ASCQ-Me?
Clinicians, researchers, and healthcare providers use ASCQ-Me for adults aged 18 and older with sickle cell disease. - How long does it take to complete ASCQ-Me?
Each short form takes 3–5 minutes, with the full questionnaire requiring 10–15 minutes. - How is ASCQ-Me administered?
It can be administered via paper, digital, mobile app, in-person interviews, or phone/video calls, offering flexibility. - Is there any cost to using ASCQ-Me?
ASCQ-Me is free for non-commercial use. Commercial use may require a licensing agreement and fees.
A word from ResRef about the QOL-OC
The Adult Sickle Cell Quality of Life Measurement Information System offers comprehensive insights into the physical, emotional, and social impacts of the disease. While primarily validated in U.S. populations, its foundational methodology supports adaptation for broader use. Overall, ASCQ-Me is a robust, patient-centered tool specifically designed for sickle cell disease, filling a critical gap in HRQoL assessment. Its integration with PROMIS® enhances comparability across populations.
References
- Treadwell MJ, Hassell K, Levine R, Keller S. Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research. Clin J Pain. 2014 Oct;30(10):902-14. doi: 10.1097/AJP.0000000000000054. PMID: 24300219; PMCID: PMC4993284. Study link.
- Keller SD, Yang M, Treadwell MJ, Werner EM, Hassell KL. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health Qual Life Outcomes. 2014 Aug 22;12:125. doi: 10.1186/s12955-014-0125-0. PMID: 25146160; PMCID: PMC4243820. Study link.
- Cooper O, McBain H, Tangayi S, Telfer P, Tsitsikas D, Yardumian A, Mulligan K. Psychometric analysis of the adult sickle cell quality of life measurement information system (ACSQ-Me) in a UK population. Health Qual Life Outcomes. 2019 Apr 29;17(1):74. doi: 10.1186/s12955-019-1136-7. PMID: 31036017; PMCID: PMC6489218. Study link.
