AGREEMENT BETWEEN PATIENTS’ AND CLINICIANS’-REPORTED OUTCOMES IN LIPODYSTROPHY (HIV/AIDS)
Author(s)
Duracinsky M1, Acquadro C2, Wu A3, Chassany O4, 1Hopital de Bicetre, Le Kremlin-Bicetre, France; 2MAPI Research Institute, Lyon, France; 3Johns Hopkins University, Baltimore, MD, USA; 4Assistance Publique - Hopitaux de Paris, Paris, France Duracinsky M1, Acquadro C2, Wu A3, Chassany O4, 1Hopital de Bicetre, Le Kremlin-Bicetre, France; 2MAPI Research Institute, Lyon, France; 3Johns Hopkins University, Baltimore, MD, USA; 4Assistance Publique - Hopitaux de Paris, Paris, France
OBJECTIVES: Lipodystrophy may greatly impairs quality of life (QoL). Nevertheless, the recognition of the scientific value of QoL and more broadly the patient's perspective in evaluating therapies is questioned. It may be useful to quantify the added value of the patient's perspective, using correlations between patient-reported outcomes (PRO's) and clinician-reported and biological outcomes. METHODS: We performed a cross-sectional survey in 143 HIV French outpatients with lipodystrophy. Clinical and demographic data were collected. Patients completed a new specific lipodystrophy questionnaire "Assessment of Body Change and Distress" (ABCD), consisting of 3 parts: signs of lipodystrophy (6 items), global satisfaction (n=1) and 20 items evaluating QoL. An HIV specific (MOS-HIV) and generic (SF-12) QoL questionnaires were also filled-in. RESULTS: Mean age was 43 ± 10 yrs (71% of men), and mean duration of HAART was 4.5 ± 1.7 yrs. ABCD QoL score is weak or not associated with viral load (r=0.03), CD4 count (r = 0.13) and CDC classification (p = NS). Its correlation with the clinician's report of number of sites of lipodystrophy is weak (r = 0.17). Correlations between different PRO's are logically higher. ABCD QoL score is more correlated with the patient's report of number of sites of lipodystrophy (r = 0.39) and with satisfaction (r = 0.58). ABCD QoL score is correlated with health distress and social dimensions of the MOS-HIV (r > 0.6) and with mental component of the SF-12 (r = 0.65), but not with physical dimensions of these questionnaires (r <0.2). CONCLUSIONS: PRO's are weakly correlated with biological markers, and although overlapping, each one of PRO's measures a distinct concept. Clinicians cannot infer the QoL of their patients neither from a viral load nor from a clinical exam. The patient's perspective is essential in medical decision making and so it is with lipodystrophy.
Conference/Value in Health Info
2004-10, ISPOR Europe 2004, Hamburg, Germany
Value in Health, Vol. 7, No. 6 (November/December 2004)
Code
QL1
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Infectious Disease (non-vaccine)
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