Adair CE, Marcoux G, Theanna F Bischoff, Brian S Cram, Carol J Ewashen, Jorge Pinzon, Joanne L Gusella, Josie Geller, Yvette Scattolon, Patricia Fergusson, Lisa Styles, Krista E Brown. Responsiveness of the Eating Disorders Quality of Life Scale (EDQLS) in a longitudinal multi-site sample. Health & Quality of Life Outcomes, 2010, 8:83 .

In  eating disorders (EDs), treatment outcome measurement has traditionally focused on symptom reduction rather than functioning or quality of life (QoL). The Eating Disorders Quality of Life Scale (EDQLS) was recently developed to allow for measurement of broader outcomes. We examined responsiveness of the EDQLS in a longitudinal multi-site study.
Methods The EDQLS and comparator generic QoL scales were collected in person at baseline, and 3 and 6 months from 130 participants (mean age 25.6 years; range 14-60) in 12 treatment programs in four Canadian provinces. Total score differences across the time points and responsiveness were examined using both anchor- and distribution-based methods.
Results 98 (75%) and 85 (65%) responses were received at 3 and 6 months respectively. No statistically significant differences were found between the baseline sample and those lost to follow-up on any measured characteristic. Mean EDQLS total scores increased from 110 (SD=24) to 124.5 (SD=29) at 3 months and 129 (SD=28) at 6 months, and the difference by time was tested using a general linear model (GLM) to account for repeated measurement (p<.001). Responsiveness was good overall (Cohen’s d=.61 and .80), and confirmed using anchor methods across 5 levels of self-reported improvement in health status (p<.001). Effect sizes across time were moderate or large for for all age groups. Internal consistency (Chronbach’s alpha=.96) held across measurement points and patterns of responsiveness held across subscales. EDQLS responsiveness exceeded that of the Quality of Life Inventory, the Short Form-12 (mental and physical subscales) and was similar to the 16-dimension quality of life scale.
Conclusions The EDQLS is responsive to change in geographically diverse and clinically heterogeneous programs over a relatively short time period in adolescents and adults. It shows promise as an outcome measure for both research and clinical practice.

Adair CE, Marcoux G, Buller A, Reimer MA. The Internet as a source of data to support the development of a Quality of Life measure for eating disorders. (Qualitative Health Research, Vol. 16 No. 4, April 2006).

Despite the attractiveness of the Internet as a data source on individuals’ experiences with health conditions, few have studied its use in quality-of-life instrument development. In this article, the authors describe the use of Internet-based unsolicited first-person narratives to supplement qualitative material derived from other sources (published articles and interviews)
in the early stages of development of a quality-of-life instrument for eating disorders. In a systematic Internet search, they identified 31 posted first-person narratives. Sixteen (52%) authors had anorexia nervosa, 11 (35%) had bulimia nervosa, and 4 (13%) had either or both diagnoses. Themes arising from the narratives were very similar to those from other sources; however, some specific sensitive topics uniquely expressed in the narratives produced items that the authors later validated in focus groups. Despite some limitations, the Internet was an efficient, inexpensive, and fruitful source of supplementary information for item generation.
Keywords: qualitative data sources; quality of life; eating disorders

Adair CE, Marcoux GC, Cram BS, Ewashen CJ, Chafe J, Cassin SE, Pinzon J, Gusella JL, Geller J. Scattolon Y, Fergusson P, Styles L, Brown KE. Development and multi-site validation of a new condition-specific quality of life measure for eating disorders. Health and Quality of Life Outcomes 2007 5(23) .

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 the evaluating ED treatment effectiveness.

Adair C, Marcoux G, Reimer, M.  The EDQLS: a new instrument for measuring quality of life.  Eating Disorders Review Nov/Dec 2005 16(6): 1-2.

 Quality of life (QOL) is increasingly being recognized as an important outcome of treatment, yet eating disorders outcome measurement has often focused on reduction of symptoms rather than on functioning or quality of life. This may be caused by the fact that until recently no suitable instrument for measuring QOL has been available for people with eating disorders.  
Where QOL has been measured, reports from clinicians suggest that generic QOL instruments developed for other (typically adult) patient populations seem to lack relevance (i.e., questionnaire items fail to reflect the developmental issues of adolescents and young adults), and patient response has also been found to be poor.

Eating Disorders Quality of Life Scale