Evaluating quality of life of patients with chronic liver disease: quest for a questionnaire

Abstract

Chronic liver disease is associated with significant morbidity and mortality, and is one of the major burdens for health care systems. Several scoring systems are available to evaluate the severity of chronic liver disease [1]; these include the well-known and popular Child-Turcotte-Pugh (CTP) score [2] and the recently established MELD scoring system [3].These scoring systems largely depend on symptoms, signs and laboratory investigations related to the disease. Though many symptoms and signs of chronic liver disease, such as ascites and encephalopathy, may be directly troublesome to patients, laboratory abnormalities such as those in serum albumin and prothrombin time may not be so. Furthermore, several other disabilities that are not included in these scoring systems may trouble the patients more. Patient-reported outcomes are considered more important in assessment of health outcomes. Thus, a holistic system to evaluate the health and well-being from the patient’s perspective is of utmost importance [4]. Considering these issues, determining overall quality of life (QOL) is of considerable importance in outcome assessment of chronic diseases [5]. Health-related QOL (HRQL) is often regarded in terms of how QOL is adversely affected by debilitating chronic disease processes. Researchers at the University of Toronto’s Quality of Life Research Unit define QOL as “the degree to which a person enjoys the important possibilities of his or her life.” While QOL has long been an explicit or implicit policy goal, an adequate definition and an accurate measurement tool have been elusive [6]. HRQL has been generally described as how well individuals function in daily lives and their own perception of well-being in physical, psychological and social aspects. Instruments used to measure HRQL are broadly of two types: generic and disease-specific [7]. Generic instruments cover the common but important health aspects, and are used to assess and compare HRQL across different health conditions [7]. SF-36 is a popular generic instrument for assessment of HRQL. It consists of eight scaled scores, which are the weighted sums of responses to questions contained in a particular section. Each scale is directly transformed into a 0–100 scale on the assumption that each question carries equal weight. The eight sections include vitality, physical functioning, bodily pain, general health perception, physical, emotional and social role functioning, and mental health [7, 8]. In contrast, disease-specific instruments are designed to reflect unique problems most relevant to a particular disease and evaluation of its outcome [7]. Therefore, disease-specific instruments are expected to be more precise and sensitive to pickup changes in HRQL, compared to generic instruments [7, 8]. Each question for assessment of HRQL, however, has to be adapted to the local population where it is being employed, according to the language, local interpretation of various terminology, lifestyle of the population, and sociocultural and economic issues [9]. Several disease-specific HRQL questionnaires have been developed assessment in specific diseases; [10–13] the chronic liver disease questionnaire (CLDQ) assesses U. C. Ghoshal Department of Gastroenterology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow 226 014, India