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

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2007

Open Access 01-12-2007 | Research

Development and multi-site validation of a new condition-specific quality of life measure for eating disorders

Authors: Carol E Adair, Gisele C Marcoux, Brian S Cram, Carol J Ewashen, Janet Chafe, Stephanie E Cassin, Jorge Pinzon, Joanne L Gusella, Josie Geller, Yvette Scattolon, Patricia Fergusson, Lisa Styles, Krista E Brown

Published in: Health and Quality of Life Outcomes | Issue 1/2007

Login to get access

Abstract

Background

In eating disorders (EDs) treatment, outcome measurement has traditionally focused on symptom reduction rather than functioning or quality of life (QoL). Generic QoL measures lack sensitivity for some diagnoses and many not be responsive in eating disorder patients. This article describes the development and validation of a condition-specific QoL measure for adolescents and adults with eating disorders – the Eating Disorders Quality of Life Scale (EDQLS).

Methods

Multi-source and multi-stage methods were used to develop the EDQLS, with participation of patients with EDs, their family members and ED treatment providers. Sources for domain and item development included 39 articles, 12 patient and 10 treatment provider interviews, and 31 first person narratives from the internet. Four stages of validation and pre-testing involving 17 patients, 10 family members and 18 providers reduced 233 items to 40 items in 12 domains. These items were pilot tested in 41 ED patients.

Results

The final instrument was then validated in a 12 site sample of 171 individuals aged 14–60 with EDs. All items showed good dispersion. The total raw mean score was 110 out of 200 (SD 27.6) with higher scores indicating better QoL. Internal consistency was excellent (Cronbach's alpha = .96) and subscale internal consistency ranged from alpha .36 to .79 providing evidence for a strong overall construct and some multi-dimensionality. Validity was supported by significant differences in mean EDQLS according to severity levels on the EDI-2 (F = 95.3, p <.001) and the BSI (F = 86.9, p <.001). EDQLS scores were positively associated with time in treatment (F = 4.65, p = .01) suggesting responsiveness. A strong positive association was also found between EDQLS scores and stage of change (F = 15.1 p <.001). Pearson's correlations between the EDQLS and criterion instrument scores were .71 for the SF-12 mental subscale, .61 for the QoLI and .78 for the 16D, supporting construct validity. Exploratory principal components and item response theory analyses identified only a few poor fitting items.

Conclusion

The EDQLS has promising psychometric characteristics and may be useful for evaluating ED treatment effectiveness.
Appendix
Available only for authorised users
Literature
1.
Hudson JI, Hiripi E, Pope HG, Kessler RC: The prevalence and correlates of eating disorders in the National Comorbidity Survey replication. Biol Psychiatry 2007, 61: 348–358. 10.1016/j.biopsych.2006.03.040PubMedCentralPubMedCrossRef
2.
Jones JM, Bennett S, Olmsted MP, Lawson ML, Rodin G: Disordered eating attitudes and behaviours in teenaged girls: a school based study. CMAJ 2001,165(5):547–552.PubMedCentralPubMed
3.
4.
Field AE, Camargo CA, Barr-Taylor C, Berkley CS, Roberts SB, Colditz GA: Peer, parent, and media influences on the development of weight concerns and frequent dieting among preadolescent and adolescent girls and boys. Pediatrics 2001,107(1):54–60. 10.1542/peds.107.1.54PubMedCrossRef
5.
delaRie SM, vanFurth EF, deKoning A, Noordenbos G, Donker MCH: The quality of life of family caregivers of eating disorder patients. Eat Disord 2005, 13: 345–351. 10.1080/10640260591005236CrossRef
6.
Wilson GT, Shafran R: Eating disorders guidelines from NICE. Lancet 2005, 365: 79–81. 10.1016/S0140-6736(04)17669-1PubMedCrossRef
7.
Berkman ND, Bulik CM, Brownley KA, Lohr KN, Sedway JA, Rooks A, Gartlehner G: Management of Eating Disorders. In Evidence Report/Technology Assessment. Rockville, MD , AHRQ; 2006.
8.
Miller PM: Redefining success in eating disorders. Addict Behav 1996,21(6):745–754. 10.1016/0306-4603(96)00033-0PubMedCrossRef
9.
delaRie SM, Noordenbos G, Furth EF: Quality of life and eating disorders. Qual Life Res 2005, 14: 1511–1522. 10.1007/s11136-005-0585-0CrossRef
10.
Noordenbos G, Seubring A: Criteria for recovery from eating disorders according to patients and therapists. Eat Disord 2006, 14: 41–54. 10.1080/10640260500296756PubMedCrossRef
11.
Anderson DA, Lundgren LD, Shapiro JR, Paulosky CA: Assessment of eating disorders; review and recommendations for clinical use. Behav Modif 2004,28(6):763–782. 10.1177/0145445503259851PubMedCrossRef
12.
Hay PJ, Mond J: How to 'count the cost' and measure burden? A review of health-related quality of life in people with eating disorders. J Ment Health 2005,14(6):539–552. 10.1080/09638230500400274CrossRef
13.
14.
Doll HA, Peterson SE, Stewart-Brown SL: Eating disorders and emotional and physical well-being: associations between student self-reports of eating disorders and quality of life as measured by the SF-36. Qual Life Res 2005, 14: 705–717. 10.1007/s11136-004-0792-0PubMedCrossRef
15.
Wiebe S, Guyatt G, Weaver B, Matijevic S, Sidwell C: Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol 2003, 56: 52–60. 10.1016/S0895-4356(02)00537-1PubMedCrossRef
16.
Guyatt G: Commentary on Jack Dowie, "Decision validity should determine whether a generic or condition-specific HRQOL measure is used in health care decisions". Health Econ 2002, 11: 9–12. 10.1002/hec.666PubMedCrossRef
17.
Eiser C, Morse R: Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001.,5(4):
18.
Mallinson S: Listening to respondents: a qualitative assessment of the Short-Form 36 Health Status Questionnaire. Soc Sci Med 2002, 54: 11–21. 10.1016/S0277-9536(01)00003-XPubMedCrossRef
19.
Padierna A, Quintana JM, Arostegui I, Gonzalez N, Horcajo MJ: Changes in health related quality of life among patients treated for eating disorders. Qual Life Res 2002, 11: 545–552. 10.1023/A:1016324527729PubMedCrossRef
20.
Dijkers MP: Individualization in quality of life measurement: instruments and approaches. Arch Phys Med Rehabil 2003,84, Suppl 2(Suppl 2):S3–14. 10.1053/apmr.2003.50241CrossRef
21.
Guyatt GH, Naylor D, Juniper A, Heyland DK, Jaeschke R, Cook DJ: Users' guides to the medical literature. How to use articles about health-related quality of life. JAMA 1997,277(15):1232–1237. 10.1001/jama.277.15.1232PubMedCrossRef
22.
Kessler RC, Mroczek DK: Some methodological issues in the development of quality of life measures for the evaluation of medical interventions. J Eval Clin Pract 1996,2(3):181–191.PubMedCrossRef
23.
delaRie SM, Noordenbos G, Donker M, vanFurth E: The patient's view on quality of life and eating disorders. Int J Eat Disord 2006, 40: 13–20.CrossRef
24.
Fayers PM, Fayers DM: Quality of Life Assessment, Analysis and Interpretation. West Sussex , John Whiley & Sons Ltd.; 2000.
25.
Cremeens J, Eiser C, Blades M: Characteristics of health-related self-report measures for children aged three to eight years: a review of the literature. Qual Life Res 2006,15(4):739–754. 10.1007/s11136-005-4184-xPubMedCrossRef
26.
Mond JM, Hay PJ, Rogers B, Owen C, Beumont PJV: Assessing quality of life in eating disorder patients. Qual Life Res 2005, 14: 171–178. 10.1007/s11136-004-2657-yPubMedCrossRef
27.
Engel SG, Wittrock DA, Crosby RD, Wonderlich SA, Mitchell JE, Kolotkin RL: Development and psychometric validation of an eating disorder-specific health-related quality of life instrument. Int J Eat Disord 2006,39(1):62–71. 10.1002/eat.20200PubMedCrossRef
28.
LasHayas C, Quintana JM, Padierna A, Bilbao A, Munoz P, Madrazo A, Urresti B, Cook EF: The new questionnaire Health-Related Quality of Life for Eating Disorders showed good validity and reliability. J Clin Epidemiol 2006, 59: 192–200. 10.1016/j.jclinepi.2005.06.005CrossRef
29.
Abraham SF, Brown T, Boyd C, Luscombe G, Russell J: Quality of life: eating disorders. Aust NZ J Psychiatry 2006, 40: 150–155. 10.1111/j.1440-1614.2006.01762.xCrossRef
30.
Vitousek K, Watson S, Wilson GT: Enhancing motivation for change in treatment-resistant eating disorders. Clin Psychol Rev 1998,18(4):391–420. 10.1016/S0272-7358(98)00012-9PubMedCrossRef
31.
WHOQOL Group: The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995,41(10):1403–1409. 10.1016/0277-9536(95)00112-KCrossRef
32.
Burke L, Stifano T, Dawisha S: Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes 2006, 4: 79. 10.1186/1477-7525-4-79CrossRef
33.
Guyatt G, Jaeschke R, Feeny DH, Patrick L: Measurements in clinical trials: choosing the right approach. In Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edition. Edited by: Spilker B. Philadelphia , Lippincott-Raven; 1996:41–47.
34.
Juniper EF, Guyatt GH, Jaeschke R: How to develop and validate a new health-related quality of life instrument. In Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edition. Edited by: Spilker B. Philadelphia , Lippincott-Raven; 1996:49–55.
35.
McDowell I, Jenkinson C: Development standards for health measures. J Health Serv Res Policy 1996,1(4):238–246.PubMed
36.
Neuendorf KA: The Content Analysis Guidebook. Thousand Oaks , Sage Publications Ltd.; 2002.
37.
Adair CE, Marcoux G, Williams A, Reimer M: The Internet as a source of data to support the development of a quality-of-life measure for eating disorders. Qual Life Res 2006,16(4):358–546.
38.
Beck AT, Steer RA, Brown GK: Manual for the Beck Depression Inventory-II. San Antonio , Psychological Corporation; 1996.
39.
Garner GM: Eating Disorder Inventory-2, Professional Manual. Odesa , Psychological Assessment Resources Inc; 1991.
40.
Trauer T, MacKinnon A: Why are we weighting? The role of importance ratings in quality of life measurement. Qual Life Res 2001, 10: 579–585. 10.1023/A:1013159414364PubMedCrossRef
41.
Ware JE, Kosinski M, Keller S: A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996,34(3):220–233. 10.1097/00005650-199603000-00003PubMedCrossRef
42.
Frisch MB, Clark MP, Rouse SV, Rudd MD, Paweleck JK, Greenstone A, Kopplin AD: Predictive and treatment validity of life satisfaction and the Quality of Life Inventory. Assessment 2005,12(1):66–78. 10.1177/1073191104268006PubMedCrossRef
43.
Apajasalo M, Sintonen H, Holmberg C, Sinkkonen J, Aalberg V, Pihko H, Siimes MA, Kaitila I, Makela A, Rantakari K, Anttila R, Rautonen J: Quality of life in early adolescence: a sixteen-dimensional health-related measure (16D). Qual Life Res 1996, 5: 205–211. 10.1007/BF00434742PubMedCrossRef
44.
Derogatis LR: Brief Symptom Inventory (BSI) Administration, Scoring, and Procedures Manual. Minneapolis , NCS Pearson Inc.; 1993.
45.
Gusella J, Butler G, Nichols L, Bird D: A brief questionnaire to assess readiness to change in adolescents with eating disorders: its applications to group therapy. Eur Eat Disord Rev 2003, 11: 58–71. 10.1002/erv.481CrossRef
46.
Field A: Exploratory factor analysis. In Discovering Statistics Using SPSS. 2nd edition. London , Sage Publications; 2005.
47.
Watkins MW: Monte carlo PCA for parallel analysis (computer software). State College , Ed & Psyc Associates; 2000.
48.
49.
Padierna A, Quintana JM, Arostegui I, Gonzalez N, Horcao MJ: The health-related quality of life in eating disorders. Qual Life Res 2000, 9: 667–674. 10.1023/A:1008973106611PubMedCrossRef
50.
Mond J, Rodgers B, Hay P, Korten A, Owen C, Beumont P: Disability associated with community cases of commonly occurring eating disorders. Aust NZ J Public Health 2004,28(3):246–251.CrossRef
51.
Hay P: Quality of life and bulimic eating disorder behaviors: findings from a community-based sample. Int J Eat Disord 2003, 33: 434–442. 10.1002/eat.10162PubMedCrossRef
Metadata
Title
Development and multi-site validation of a new condition-specific quality of life measure for eating disorders
Authors
Carol E Adair
Gisele C Marcoux
Brian S Cram
Carol J Ewashen
Janet Chafe
Stephanie E Cassin
Jorge Pinzon
Joanne L Gusella
Josie Geller
Yvette Scattolon
Patricia Fergusson
Lisa Styles
Krista E Brown
Publication date
01-12-2007
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2007
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-5-23

Other articles of this Issue 1/2007

Health and Quality of Life Outcomes 1/2007 Go to the issue

Research

Validity of SF-12 summary scores in a Greek general population

Research

Quality of life of adult retinoblastoma survivors in the Netherlands

Research

Which health-related quality of life score? A comparison of alternative utility measures in patients with Type 2 diabetes in the ADVANCE trial

Research

Assessment of Survivor Concerns (ASC): A newly proposed brief questionnaire

Review

Theoretical framework and methodological development of common subjective health outcome measures in osteoarthritis: a critical review

Research

Validity and reliability of the Spanish version of the DN4 (Douleur Neuropathique 4 questions) questionnaire for differential diagnosis of pain syndromes associated to a neuropathic or somatic component