Original ArticleThe new questionnaire Health-Related Quality of Life for Eating Disorders showed good validity and reliability
Introduction
Emphasis recently has been placed on the importance of health-related quality of life (HRQoL) in assessing states of health and outcomes of medical care, especially in chronic diseases. The term HRQoL does not have a unique definition; however, there is broad agreement that it is a subjective, multidimensional construct comprising three major aspects of functioning: physical, psychological, and social [1].
After reviewing the literature, we found that few studies have focused explicitly on measuring the HRQoL in patients with anorexia nervosa (AN) and bulimia nervosa (BN) [2], [3], [4], [5], [6]. Interestingly, most studies were concerned with the relationship between binge eating disorder and HRQoL [7], [8], [9], [10], [11], [12]. Padierna et al. [4] reported that patients with AN and BN had a perception of improvement in HRQoL after 2 years of treatment. Nevertheless, these patients were still more dysfunctional compared with the general population. All the studies reviewed may be limited due to the use of a generic HRQoL instrument that “may fail to capture the extent of the disability caused by the illness” [5] for the groups of patients with an eating disorder (ED). The creation of a specific HRQoL instrument would allow greater discrimination of severity of disease and responsiveness to treatment [6], [13], [14].
To offset these deficiencies, we developed the Health-Related Quality of Life in Eating Disorders (HeRQoLED) self-report questionnaire, which is comprised of 50 questions that measure eight health-related domains, including one symptom index (10 items). It also contains three single items that are not used to score any of the domains but provide useful data for clinical practice. They provide information about the regularity of menstrual periods, the effect of certain behaviors on the perception of the patient's quality of life, and the motivation of the patient to change his or her ED.
Section snippets
Aims of the study
We sought to develop an instrument to measure the HRQoL in ED patients. Its psychometric properties were explored, and we also wanted to test whether the HeRQoLED questionnaire could discriminate between subjects with an ED and a group comprised of members of the general population.
Participants and procedures
Four psychiatrists experienced with EDs, from three health centers in Bizkaia, Spain, collaborated in the recruitment of participants. The criteria for inclusion in the study were that participants had to (1) be diagnosed with an ED, according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria [15]; (2) be treated on a regular basis in one of the three centers; (3) not have a clinically serious multiorganic disorder, cerebral organic deterioration, or
Results
Data on the 324 respondents were compared against the 70 who did not return the questionnaire. No statistically significant differences were found in any of the variables, including the level of severity of the ED. Nevertheless, we observed that a higher percentage of the patients who did not respond to the HeRQoLED were in the precontemplation phase (i.e., patients responded that they did not consider that they had an eating problem) and contemplation phase (i.e., subjects were starting to
Discussion
As Fairclough pointed out [45], it is preferable to select a previously validated instrument than to create a new one. Should this instrument be unavailable in the required language, it is also advisable to make a cultural adaptation of a good instrument instead of creating a new one. Nevertheless, our creation of the HeRQoLED is reasonable due to the absence of a satisfactorily validated instrument with the basic aim of measuring HRQoL for persons with an ED. The available literature on the
Acknowledgments
This study was funded by the Instituto de Salud Carlos III (Expedient: 00/0115). We are grateful to all the patients with an ED and to the students who participated in the study. We also thank Dra. Esther Calvete, Inmaculada Arostegui, Dra. Begoña Matellanes, and the Foundation Escuela Diocesana de Educadores (Fundación EDE) for helping to recruit the general population group, and to Yarima Etxeberria for her important contribution in the study. We are also grateful for their helpful comments
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