Publications and Presentations

Publications:

 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. 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.

Presentations:

Adair CE. Validity and responsiveness of the Eating Disorders Quality of Life Scale (EDQLS) in a longitudinal multi-site sample. accepted Academy for Eating Disorders, Seattle WASH, May 2008
In eating disorders (EDs) treatment, outcome measurement has traditionally focused on symptom reduction rather than functioning or quality of life (QoL).  Until recently no ED-specific QoL instrument was available. We examined psychometric characteristics of a new condition-specific measure for eating disorders – the Eating Disorders Quality of Life Scale (EDQLS), in a longitudinal multi-site study. Participants were 124 women and 6 men with eating disorders (mean age 25.6 years; range 14-60) from 12 treatment programs in 4 Canadian provinces. The EDQLS and 3 generic QoL scales were completed in-person at baseline, and by mail 3 and 6 months later. Internal consistency was excellent overall (alpha .96) and for the 12 subscales (.36 to .79). Trends in EDQLS scores, at baseline, in predicted directions with comparator instrument total scores and specific items, as well as a strong positive association with stage of change (F = 15.1, p = .000) supported construct validity.  93 (75%) and 85 (65%) responses were received at 3 and 6 months.  No significant differences were found on age, sex, diagnosis, severity (BSI and EDI scores), comorbidity, or time in treatment across time point samples.  EDQLS total mean scores increased from 110 (SD 28) to 124.5 (SD 29) at 3 months and 129 (SD 28) at 6 months (p=.000 using repeated measures GLM). Responsiveness was very good using Cohen’s d calculation (.53 and .70) and other distribution methods, and confirmed using anchor methods (across 5 levels of self-reported improvement (p=.000)). EDQLS responsiveness exceeded that of the Qoli and SF-12 (both subscales), and was similar to the 16D.  The EDQLS is responsive in a relatively short time period, under heterogeneous treatment conditions across multiple sites, and thus may be useful as an outcome measure.
Adair CE, Marcoux G, Cram B, Ewashen CJ, Pinzon J, Gusella JL, Geller J, Scattolon Y, Fergusson P, Cassin SE, Brown K. Responsiveness of the Eating Disorders Quality of Life Scale (EDQLS) in a longitudinal multi-site sample. Eating Disorders Association of Canada, Calgary AB Feb. 2008

 Purpose - In eating disorders (EDs) treatment, outcome measurement has traditionally focused on symptom reduction rather than functioning or quality of life (QoL).  Until recently no ED-specific QoL instrument was available. We examined responsiveness of the Eating Disorders Quality of Life Scale (EDQLS) in a longitudinal multi-site study.
Methods - 124 women and 6 men (mean age 25.6 years; range 14-60) from 12 treatment programs in 4 provinces participated.  EDQLS scores along with comparator generic QoL scales were collected in-person at baseline, and by mail 3 and 6 months later.
Results - 93 (75%) and 85 (65%) responses were received at 3 and 6 months.  No significant differences were found on age, sex, diagnosis, severity (BSI and EDI scores), comorbidity, or time in treatment across time point samples.  EDQLS total mean scores increased from 110 (SD 28) to 124.5 (SD 29) at 3 months and 129 (SD 28) at 6 months (p<.000 using GLM). Responsiveness was very good using Cohen’s d calculation (.53 and .70) and other distribution methods, and confirmed using anchor methods (across 5 levels of self-reported improvement (p<.000)). Internal consistency (alpha .96) held across measurement points and patterns of responsiveness held across all 12 subscales. EDQLS responsiveness exceeded that of the Qoli and SF-12 (mental and physical subscales), and was similar to the 16D.
Conclusions - The EDQLS is reponsive to change in geographically diverse ED patients in a relatively short time period and thus may be useful as an outcome measure for both research and practice.
 

Adair CE, Marcoux G, Cram B, Ewashen C, Chafe J and the National EDQOL Research Team. Multi-site validation of a new disease-specific quality of life measure for eating disorders. Canadian Society for Epidemiology and Biostatistics, Calgary, Alberta, May 2007.
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 may lack sensitivity and responsiveness in ED patients. We report on the development and validation of a disease-specific QoL measure for eating disorders - the Eating Disorders Quality of Life Scale (EDQLS).
Methods: Sources for domains and items were 39 articles, 12 patient and 10 provider interviews, and 31 first person narratives from the internet. Four stages of pre-testing with 50 patients, providers and family members reduced 233 items to 40 in 12 domains, which were pilot tested in 41 patients in Calgary.
Results:  The instrument was then validated in 12 ED programs in four provinces with 171 individuals aged 14-60.  All items showed good dispersion. The total raw mean score was 110 out of 200 (SD 27.6). Internal consistency was excellent (Cronbach’s alpha = .96) and subscale internal consistency alphas ranged from .36 to .79 providing evidence for a strong overall construct and some multi-dimensionality. Trends in EDQLS scores in predicted directions and correlations with item and total scores on the SF-12, QoLi and 16D support construct validity. EDQLS scores were positively associated with time in treatment (<3 months (110.3, SD 29); 3-12 months (100, SD 23.6) and over 12 months (116, SD 25.4); F = 4.65, p = .01)) suggesting good responsiveness. This association was not linear, possibly due to egosyntonic reporting and was likely dampened by confounding by age and severity. Validity was also supported by a strong association between EDQLS scores and stage of change (F = 15.1 p = .000). Exploratory factor and item response theory analyses identified only a few poor fitting items.
Conclusion:  The EDQLS has promising psychometric characteristics and may be useful for outcomes research in EDs.

Marcoux G, Adair CE, Ewashen C, Cram B.  Quality of life in eating disorders project – A case study in recruitment woes and wisdom. Mental Health Research Showcase, Banff, Alberta, Oct./Nov. 2006.

Objective:  A new quality of life measure for eating disorders (the EDQLS) is being tested in ED programs across Canada.  A large and geographically diverse sample with an age range spanning adolescence through adulthoood is needed with follow-up over 6 months.  Effective recruitment methods are critical in difficult to engage populations  (Morrison-Beedy et al. 2001) and there is sparse literature on recruitment in eating disorder populations (Fletcher & Hunter, 2003). We report on the experience of recruiting and following study participants in ED programs as identified in our national validation study.
Methods: Naturalistic, observational case study of 11 sites in four provinces. The main study involved completion of baseline questionnaires and 3 and 6 month follow-up questionnaires by mail. Eligible participants were approached by clinical staff in all sites except one, so cooperation had to be elicited from both staff and patients.  Recruitment methods included in-person contact and written materials. Comprehensive notes were taken during the process and qualitatively analysed for general patterns.
Results: Several program characteristics seemed to influence the effectiveness of recruitment. The most successful recruitment sites had the following: A local study champion; face-to-face encounters with a friendly, and professional research associate (RA); direct introduction of the project by the RA and continued presence in the program during the recruitment period. Presentations to treatment groups generated the most positive response because the participation of one would often encourage others. Some of the challenges encountered that seemed to impede recruitment were internal politics and heavy caseloads, which negate staff interest and support. Additional steps for obtaining parental consent in adolescent populations are also a challenge.
Conclusion: Recruitment in ED patient populations requires patience, organization and perseverance which can be costly to a project. Increased awareness of the challenges and strategies in recruitment for ED research can improve planning and effectiveness of studies. 
Implications for policy & practice: Support from research funders and program managers related to successful recruitment in special research populations will result in stronger research findings which will ultimately benefit individuals suffering from such disorders.

Ewashen C, Marcoux G, Adair CE, Reimer M, & Cram B.  A new quality of life instrument for eating disorders: item generation, reduction, and pre-testing.  The Canadian Psychological Association 67th Annual Convention, Calgary, Alberta, Jun. 2006.

We discuss development of the first known disease-specific quality of life (QL) instrument to evaluate treatment effectiveness for adolescent and young adults diagnosed with eating disorders (ED). Generic QL measures lack the responsiveness to detect changes important to evaluating treatment in this population. Additionally, traditional outcome measurement in ED predominantly focuses on symptom reduction rather than functioning or QL.
Item generation involved systematic literature content analysis, patient and expert provider interviews, and first-person narratives from the internet. Patient focus groups further (a) validated identified domains, and (b) tested specific items of concern. Focus groups were extremely valuable in identifying items participants considered most relevant, and in offering suggestions for item revision. Several stages of pre-testing reduced a pool of approximately 500 items to the final set of 40 over 12 domains.
The final 40 item-instrument, the Eating Disorders Quality of Life Scale (EDQLS), was piloted with 41 girls and women with anorexia, bulimia or both (30%, 40%, 10% respectively) aged 15-44 (mean 24.4, SD 8). The EDQLS has good preliminary psychometric characteristics, including a most encouraging finding – those in treatment longer reported better QL. National field testing and validation (against the SF-12 QoLI and 16D) in 10 programs across Canada is planned for 2005/2006.

Adair CE, Reimer M, Marcoux G, Cram B, Ewashen C.  A new quality of life instrument for eating disorders: pilot results.  The Association for Eating Disorders International Conference, Barcelona, Spain, Jun. 2006.

In eating disorders (ED), outcome measurement typically focuses on symptom reduction rather than functioning or quality of life (QL).  Generic OL measures lack utility in ED patients, and disease-specific QL measures have not been available. Using multi-source and multi-stage methods, we developed a developmentally appropriate, ED-specific QL instrument with preference weighting. Item generation sources included the literature, patient and provider interviews, and internet narratives. Four stages of validation and pre-testing involving patients, professionals and families reduced 300 items to 40 in 12 domains. The final instrument, the EDQLS, (mean completion time 5 minutes) was piloted with 41 girls/women with anorexia, bulimia or both (30%, 40%, 10%) aged 15-44 (mean 24.4, SD 8). All items showed good dispersion. The total raw mean score was 115.9 (SD 29). Internal consistency was high (Cronbach’s alpha = .97 (item to total scale)) and ranged from .41 to .86 (subscales to total) suggesting multi-dimensionality. Trends in QL scores (untested due to small sample) in predicted directions suggest construct validity. Those under 18 reported higher QL (127, SD 31) than those 19-24 (114, SD 28), 25-29 (112, SD 30) and over 30 (106, SD 26). Respondents with anorexia reported higher QL (123, SD 33) than those with bulimia (117, SD 25) or both diagnoses (107, SD 35).  Those in treatment longer reported better QL:  <3 months (106, SD 24); 4-8 months (115, SD 23) and >8 months (128, SD 35) despite probable confounding by age and severity, suggesting good responsiveness. The EDQLS has promising preliminary characteristics, which require statistical confirmation in larger samples. It is currently being field tested and validated in a longitudinal study in 10 programs. The EDQLS may hold promise for the evaluation of ED treatment effectiveness.

Adair CE, Reimer M, Marcoux G, Cram B, Ewashen C.  A new quality of life instrument for eating disorders: pilot results.  Mental Health Research Showcase, Banff, Alberta, Nov. 2005.

Objective: Outcome measurement is important for determining treatment effectiveness and improving services. In eating disorders (ED), outcome measurement has traditionally and predominantly focused on symptom reduction rather than functioning or quality of life (QL). However, generic QL measures lack relevance and responsiveness in this population.  Design and Methods: We’ve developed the first known disease-specific QL instrument for ED using literature content analysis, patient and provider interviews, and first person narratives from the internet. Several stages of pre-testing reduced a pool of over 300 items to the final set of 40 in 12 domains.Results: The final instrument, the EDQLS, was piloted with 41 girls and women with anorexia, bulimia or both (30%, 40%, 10% respectively) aged 15-44 (mean 24.4, SD 8) in the Calgary ED program. Mean completion time was 5 minutes (range 2 to 11). All items showed good dispersion (minimal ceiling or floor effects). The total raw mean score was 115.9 (SD 29). Internal consistency was very high (Cronbach’s alpha = .965 (item: total scale)) and ranged .410 - .859 for domains: total score as would be expected in a multi-dimensional instrument. Patterns of rated QL were consistent with the literature or in predicted directions, supporting construct validity. Those under 18 reported a higher mean raw score QL (127 SD 31) than those 19-24 (114 SD 28), 25-29 (112 SD 30) and over 30 (106 SD 26). Respondents with anorexia reported higher QL (123 SD 33) than those with bulimia (117 SD 25) or both diagnoses (107 SD 35). The most encouraging finding is those in treatment longer reported better QL <3 months (106 SD 24); 4-8 months (115 SD23) and >8 months (128 SD 35) even with probable confounding by age and severity. These preliminary patterns require statistical confirmation in larger samples.    Conclusions: The EDQLS has good preliminary psychometric characteristics. It will be field tested and validated (against the SF-12 QoLI and 16D) in 10 programs across Canada in 2005/2006.Implications for Policy and Practice: The EDQLS may hold promise as a standard QL instrument for the evaluation of ED service effectiveness at the individual, program and system levels. 
 
Eating Disorders Quality of Life Scale