Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2019

Open Access 01-12-2019 | Research

Psychometric analysis of the adult sickle cell quality of life measurement information system (ACSQ-Me) in a UK population

Authors: Owen Cooper, Hayley McBain, Sekayi Tangayi, Paul Telfer, Dimitris Tsitsikas, Anne Yardumian, Kathleen Mulligan

Published in: Health and Quality of Life Outcomes | Issue 1/2019

Login to get access

Abstract

Background

The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) has been shown to be a reliable and valid questionnaire measuring health-related quality of life (HRQoL) in the US sickle cell disease (SCD) population. The study objective was to test the validity and reliability of the ASCQ-Me for use in the UK.

Methods

The US ASCQ-Me, Hospital Anxiety and Depression Scale (HADS), self-reported symptoms, and Medical Outcome Survey Short Form 36 (SF-36) were administered to 173 patients with SCD. Clinical severity was assessed by the number of painful episodes indicated by hospital admissions.

Results

The results showed that the item banks of the UK ASCQ-Me had good internal consistency. Anxiety and depression were strongly correlated with the emotional, and social item banks of the UK ASCQ-Me, with moderate correlations between the UK ASCQ-Me item banks and SF-36 components suggesting convergent validity. A confirmatory factor analysis confirmed the conceptual framework of the scale as being the same as the US ASCQ-Me, indicating construct validity. Known groups validity was found, with the ASCQ-Me being able to differentiate by SCD severity groups.

Conclusion

The analysis of the sample shows evidence of both validity and reliability of the ASCQ-Me for use in the UK SCD population.
Appendix
Available only for authorised users
Literature
1.
Streetly A, Latinovic R, Henthorn J. Positive screening and carrier results for the England-wide universal newborn sickle cell screening programme by ethnicity and area for 2005–07. J Clin Pathol. 2010;63:626–9.CrossRef
2.
National Institute for Health and Clinical Excellence clinical guideline 143: Sickle cell acute painful episode: Management of an Acute Painful Sickle Cell Episode in hospital. 2012.
3.
Lucas SB, Mason DG, Mason M, Weyman D on behalf of NCEPOD: A sickle crisis?: A report of the National Confidential Enquiry into Patient Outcome and death. NCEPOD; 2008.
4.
Anie KA, Steptoe A, Bevan DH. Sickle cell disease: pain, coping and quality of life in a study of adults in the UK. Br J Health Psychol. 2002;7:331–44.CrossRef
5.
Panepinto JA. Health-related quality of life in patients with hemoglobinopathies. Hematology American Society of Hematology Educ Program Book. 2012;2012:284–9.
6.
Panepinto JA, Bonner M. Health-related quality of life in sickle cell disease: past, present, and future. Pediatr Blood Cancer. 2012;59:377–85.CrossRef
7.
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992;30:473–83.
8.
Group TE. EuroQol-a new facility for the measurement of health-related quality of life. Health policy. 1990;16:199–208.CrossRef
9.
Bowling A. Measuring health: a review of quality of life measurement scales. Milton: Open University Press Milton Keynes; 1991.
10.
Beattie D, Golledge J, Greenhalgh R, Davies A. Quality of life assessment in vascular disease: towards a consensus. Eur J Vasc Endovasc Surg. 1997;13:9–13.CrossRef
11.
Bowling A. Research methods in health: investigating health and health services. Maidenhead: McGraw-Hill Education (UK); 2014.
12.
Adams-Graves P, Lamar K, Johnson C, Corley P. Development and validation of SIMS: an instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol. 2008;83:558–62.CrossRef
13.
Werner EM, Treadwell M, Hassell K, Keller S, Levine R. Sickle cell disease health-related quality of life questionnaire project. Blood. 2006;108:3339.
14.
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;30:902.CrossRef
15.
Meenan RF, Gertman PM, Mason JH. Measuring health status in arthritis. Arthritis Rheum. 1980;23:146–52.CrossRef
16.
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;12:125.CrossRef
17.
Keller S, Yang M, Treadwell MJ, Hassell KL. Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: comparison of PROMIS® to ASCQ-me℠. Health Qual Life Outcomes. 2017;15:117.CrossRef
18.
Fries JF, Bruce B, Cella D. The promise of PROMIS: using item response theory to improve assessment of patient-reported outcomes. Clin Exp Rheumatol. 2005;23:S53.PubMed
19.
Hofstede G. The cultural relativity of the quality of life concept. Acad Manag Rev. 1984;9:389–98.CrossRef
20.
Alonso J, Bartlett SJ, Rose M, Aaronson NK, Chaplin JE, Efficace F, Leplège A, Aiping L, Tulsky DS, Raat H. The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative. Health Qual Life Outcomes. 2013;11:210.CrossRef
21.
Keller S, Evensen C, Yang M. Adult Sickle Cell Quality of Life Measurement Information System: ASCQ Me User’s Manual. Bethesda: National Heart. Lung and Blood Institute; 2011.
22.
Asnani RM, Ali S, Lipps G, Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health. 2008;8:890.PubMed
23.
Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRef
24.
Johnston M, Pollard B, Hennessey P. Construct validation of the hospital anxiety and depression scale with clinical populations. J Psychosom Res. 2000;48:579–84.CrossRef
25.
Anie KA, Green J, Tata P, Fotopoulos CE, Oni L, Davies SC. Self-help manual-assisted cognitive behavioural therapy for sickle cell disease. Behav Cogn Psychother. 2002;30:451–8.CrossRef
26.
Ritter PL, González VM, Laurent DD, Lorig KR. Measurement of pain using the visual numeric scale. J Rheumatol. 2006;33:574–80.PubMed
27.
Charache S, Terrin ML, Moore RD, Dover GJ, Barton FB, Eckert SV, McMahon RP, Bonds DR. Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia. N Engl J Med. 1995;332:1317–22.CrossRef
28.
Little RJ. A test of missing completely at random for multivariate data with missing values. J Am Stat Assoc. 1988;83:1198–202.CrossRef
29.
George D, Mallery P. SPSS for Windows step by step: A simple guide and reference, 11.0 atualização (4ª edição). Boston: Allyn & Bacon; 2003.
30.
FDA. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims. Fed Regist. 2009;74:65132–3.
31.
Evans JD. Straightforward statistics for the behavioral sciences. Pacific Grove: Brooks/Cole; 1996.
32.
Brown TA, Moore MT. Confirmatory factor analysis. In: Handbook of structural equation modeling; 2012. p. 361–79.
33.
Cook KF, Kallen MA, Amtmann D. Having a fit: impact of number of items and distribution of data on traditional criteria for assessing IRT’s unidimensionality assumption. Qual Life Res. 2009;18:447–60.CrossRef
34.
Pereira SAS, Brener S, Cardoso CS, Proietti ABFC. Sickle cell disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter. 2013;35:325–31.PubMedPubMedCentral
35.
McClish DK, Penberthy LT, Bovbjerg VE, Roberts JD, Aisiku IP, Levenson JL, Roseff SD, Smith WR. Health related quality of life in sickle cell patients: the PiSCES project. Health Qual Life Outcomes. 2005;3:50.CrossRef
36.
Ferrucci L, Baldasseroni S, Bandinelli S, De Alfieri W, Cartei A, Calvani D, Baldini A, Masotti G, Marchionni N. Disease severity and health-related quality of life across different chronic conditions. J Am Geriatr Soc. 2000;48:1490–5.CrossRef
37.
Akinola N, Bolarinwa R, Faponle A. The import of abdominal pain in adults with sickle cell disorder. West Afr J Med. 2009;28:83–6.
38.
Steinberg MH. Predicting clinical severity in sickle cell anaemia. Br J Haematol. 2005;129:465–81.CrossRef
39.
Sebastiani P, Nolan VG, Baldwin CT, Abad-Grau MM, Wang L, Adewoye AH, McMahon LC, Farrer LA, Taylor JG, Kato GJ. A network model to predict the risk of death in sickle cell disease. Blood. 2007;110:2727–35.CrossRef
40.
Aisiku IP, Smith WR, McClish DK, Levenson JL, Penberthy LT, Roseff SD, Bovbjerg VE, Roberts JD. Comparisons of high versus low emergency department utilizers in sickle cell disease. Ann Emerg Med. 2009;53:587–93.CrossRef
41.
National Institute for Health and Care Excellence Sickle cell disease Quality standard. London: NICE; 2014.
Metadata
Title
Psychometric analysis of the adult sickle cell quality of life measurement information system (ACSQ-Me) in a UK population
Authors
Owen Cooper
Hayley McBain
Sekayi Tangayi
Paul Telfer
Dimitris Tsitsikas
Anne Yardumian
Kathleen Mulligan
Publication date
01-12-2019
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2019
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-019-1136-7

Other articles of this Issue 1/2019

Health and Quality of Life Outcomes 1/2019 Go to the issue

Research

Responsiveness and minimal clinically important difference of the Minnesota living with heart failure questionnaire

Research

Health-related quality of life of patients diagnosed with COPD in Extremadura, Spain: results from an observational study

Research

Rehabilitation interventions in randomized controlled trials for low back pain: proof of statistical significance often is not relevant

Research

Health-related quality of life and glycaemic control among adults with type 1 and type 2 diabetes – a nationwide cross-sectional study

Research

Medium-term health-related quality of life in patients with pulmonary arterial hypertension treated with goal-oriented sequential combination therapy based on exercise capacity

Research

Angioedema quality of life questionnaire (AE-QoL) - interpretability and sensitivity to change