The International Health-Related Quality of Life Outcomes Database (IQOD). Reference values of the PGWBI on 8536 subjects

Article type
Authors
Chassany O, Duracinsky M, Lobo-Luppi L, Dubois D, Dimenas E, Wu A
Abstract
Background and objectives: IQOD aims at improving the lack of cross-cultural reference values. It is based on the analysis of multinational item responses to 3 health-related quality of life questionnaires and their translations: WHQ, MLwF, and Psychological General Well-Being Index (PGWBI). The PGWBI is a 22-item scale to measure affective or emotional states reflecting a sense of subjective well-being or distress, developed in English US, and translated into 36 languages.

Methods: The IQOD-PGWBI database includes 8536 eligible patients gathered from 11 studies (19 countries, 16 languages), in different conditions : digestive problems (65% of patients), controls (17%), chronic constipation (8%), colorectal cancer (4%), and IBS, menopause and HTA. The countries which contributed the most to the database are: USA (29% of patients), Italy (17%), Canada (12%), Netherlands (7%), Switzerland (6%), Japan (6%), Sweden (5%) and France (4%).

Results: Results showed substantial support for the construct validity of the 6 PGWBI dimensions and for cross-cultural equivalence (results reported elsewhere). We report some PGWBI values according to clinical and socio-demographic data. The global PGWBI index was 73+-16 [0, 100 (best)] on the whole sample. Score was slightly lower among women than men: 72+-16 vs 74+-16. This difference was seen across all diseases (except IBS) and all age categories. Scores differed with the marital status: divorced or widowed subjects (72+-16) had a lower score than if married (73+-15) or being single (74+-15), irrespective of the disease. Differences of scores of PGWBI dimensions and of global index are noteworthy. The diseases for which the impact on the global index is the highest are IBS (68+-17), and menopause (70+-16). IBS is a functional disorder, made of unpredictable bout of symptomatic crises. Menopause is due to hormonal disturbances and expresses with uncomfortable symptoms. Both of them impact greatly the perception of well-being and of quality of life. The impact is less marked by chronic constipation (71+-16), HTA (71+-16), and by digestive problems (73+-16). Surprisingly, patients with colorectal cancer had the less impaired well-being scores (75+-15), and a shift may be part of the explanation. Patients with cancer may redefine their priorities in life and the importance they give to them. Patients with colorectal cancer appear to have even better scores than the control patients (74+-15).

Conclusion: Thus, the impact of a disease on well-being or quality of life is not associated with its severity as perceived by the medical community, e.g. cancer vs. IBS or menopause. It cannot be simply inferred from physiological or clinician-reported assessments, or even from patient-reported symptoms. It needs to be measured by its own using quality of life questionnaires. This large database may help to constitute reference values for the PGWBI.

Acknowledgment: European Commission support under contract no: QLRI-CT-2000-00551