ArticleThe Clinical journal of pain2014
Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.
Article in The Clinical journal of pain, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 66 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
66 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Health State Utilities for Sickle Cell Disease: A Catalog Prepared From a Systematic Review.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2022Pooled it
- Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.Frontiers in pediatrics · 2022Pooled it
- Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium.American journal of hematology · 2020Trial
- Bone marrow transplantation for adolescents and young adults with sickle cell disease: Results of a prospective multicenter pilot study.American journal of hematology · 2019Trial
- Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks.Health and quality of life outcomes · 2014Trial
- Consistency of ASCQ-Me Scores Across Repeated Measures in Sickle Cell Disease.Western journal of nursing research · 2026Observational
- Cure Sickle Cell Initiative recommendations on common data elements for sickle cell disease gene therapy trials.Blood advances · 2026Article
- Psychometric evaluation of Patient-Reported Outcomes Measurement Information System (PROMIS) in pediatric sickle cell disease in Europe.European journal of pediatrics · 2026Article
- Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease.JAMA network open · 2026Observational
- A Scoping Review of Qualitative Studies on Inpatient Care for Individuals with Sickle Cell Disease.Journal of general internal medicine · 2026Article
- Low bone mineral density and pain impact in adults with sickle cell disease.Blood advances · 2026Article
- Impact of Isovolemic Hemodilution-Red Cell Exchange on Health-Related Quality of Life in Patients With Sickle Cell Disease: A Pilot Study.Journal of clinical apheresis · 2026Article
- Criterion validity of the functional status and pain assessment scale versus pain and length of stay in hospitalized adults with SCD.Journal of sickle cell disease · 2026Article
- Article
- A pilot study of dronabinol for the treatment of pain in sickle cell disease.Pilot and feasibility studies · 2025Article
- The Community Health Workers and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care (COMETS) Trial: Protocol for a Randomized Controlled Trial.JMIR research protocols · 2025Article
- Long-term mitapivat treatment is safe and efficacious in patients with sickle cell disease.Blood red cells & iron · 2025Article
- An Examination of John Henryism in Adults Living with Sickle Cell Disease.Journal of racial and ethnic health disparities · 2025Article
- Epidemiology of sickle cell disease in tribal population of Southern Rajasthan, India.Scientific reports · 2025Article
- The role of religiosity and spirituality in coping with sickle cell disease clinical severity.Journal of sickle cell disease · 2025Article
6 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
objectivesResearch-derived evidence about the impact of sickle cell disease (SCD) on the lives of affected adults is lacking. We conducted formative research to provide the basis for a comprehensive description of how SCD affects the lives of adults, with the goal of developing a SCD-specific quality-of-life measurement system.
methodsWe conducted a comprehensive literature review of patient-reported outcomes, followed by a series of focus groups and structured individual interviews with adults with SCD (n=122) and their health care providers (n=15).
resultsWe reviewed 473 abstracts and included 86 articles in the final review. The literature revealed broad categories of the impact of SCD and its treatment on the lives of adults-pain; emotional distress; social-role functioning; overall quality-of-life; and quality of care. We classified 1213 incidents from the focus groups and interviews into a taxonomy (16 domains) that met the criterion for saturation and was demonstrated to be reliable for the classification of incidents. The final conceptual model was built upon the taxonomy. DISCUSSION: Our conceptual model was similar to previous models with the effects of pain predominating, interwoven with emotional distress, quality of care, and stigmatization. We found a broad range of emotions reflected, including positive effects of SCD. Items for the quality-of-life measure were derived from the taxonomy and the conceptual model may be of use in generating hypotheses for clinical research and improving understanding for clinicians of the lived experience of adults with SCD.
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