Mesures de qualité de vie au cours du lupus systémique : état des lieux,actualité et utilisation pratique

Systemic lupus erythematosus (SLE) is a chronic disease that considerably hampers patient's daily living. Qualitative studies with patients’ interviews have been conducted to describe the experiences and perspectives of adults living with SLE. Among existing generic and disease-specific quality of life (QOL) questionnaires, none succeeded to exhaustively measure patient's preoccupations. However, these tools are useful to quantify the burden of the disease. Social precariousness, socioeconomic status and education level are intimately correlated to QOL measures, either generic or disease-specific. Musculoskeletal disease activity is also associated with a lower QOL. Using disease-specific tools may be useful because of a better aptitude to record an improvement in health status. Moreover, using generic and disease-specific questionnaires together may help to identify factors associated with a lower quality of life but not related to SLE from the patient's perspective (such as smoking or obesity). Developing new ways of recording QOL data in the future may help to evaluate the real benefit of using QOL scales in daily practice.     

Factors associated with health-related quality of life in chronic pancreatitis

OBJECTIVES: Chronic pancreatitis may lead to considerable reduction in health-related quality of life, but factors associated with a poor perceived health status have not been investigated. METHODS: We recruited 265 patients with chronic pancreatitis from a tertiary care gastroenterology clinic. Health-related quality of life was assessed using the Short Form-36 Health Survey. Data were compared with age- and gender-adjusted values from the German general population (6964 adults). Factors associated with poor perceived health status were identified by logistic regression. RESULTS: All domains of health-related quality of life were reduced in chronic pancreatitis. Decrements were most pronounced in role limitations caused by physical (-25%) and emotional health problems (-15%), and general health perceptions (-19%). Severity of abdominal pain, chronic pancreatic diarrhea, low body weight, and loss of work independently contributed to the physical component score of the Short Form-36 (adjusted R2= 33.8%) and were the factors most closely associated with poor health status perception. The etiology and duration of the disease or changes in pancreatic morphology had no impact on health-related quality of life. CONCLUSIONS: Patients with chronic pancreatitis experience substantial impairments in health-related quality of life. The severity of chronic pancreatitis-related symptoms is directly associated with patient function and well-being. These data offer further insight into the impact of chronic pancreatitis on patient health status and may serve as the basis for the development of disease-specific instruments, which are needed to measure the effect of therapeutic interventions on patient-derived health outcomes.     

Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health-related quality-of-life measure for cystic fibrosis

BACKGROUND: The Cystic Fibrosis Questionnaire (CFQ) is a disease-specific instrument that measures health-related quality of life (HRQOL) for adolescents and adults with cystic fibrosis (CF) > or = 14 years, consisting of 44 items on 12 generic and disease-specific scales. Versions of the CFQ are also available for children with CF and their parents. This study evaluated the psychometric properties of the CFQ in a national study at 18 CF centers in the United States. PARTICIPANTS: The CFQ-teen/adult was administered to 212 patients with CF ranging in age from 14 to 53 years. Test-retest reliability was assessed in a subset of patients over a 10- to 14-day interval. RESULTS: Multitrait analysis indicated a majority of items (95%) correlated more highly with their intended scale than a competing scale, supporting the conceptual model. Internal consistency coefficients indicated the CFQ scales had good reliability (Cronbach alpha = 0.67 to 0.94), and test-retest stability was acceptable (rs = 0.45 to 0.90). Validity was demonstrated by examining relationships between the CFQ, age, pulmonary function, and body mass index. As expected, the CFQ was inversely correlated with age, with older adults reporting lower CFQ scores than younger adults, better nutritional status was positively correlated with several weight-related scales, and the measure differentiated between individuals with varying levels of disease severity. Strong associations were also found between the CFQ and similar scales on the Short Form-36 Health Questionnaire, a well-known generic HRQOL measure. CONCLUSIONS: The results demonstrated that the CFQ-teen/adult is a reliable and valid measure of HRQOL for individuals with CF. It may be utilized in clinical trials to assess the effects of new therapies, to document the progression of disease, and to inform clinical practice.     

Development and validation of SIMS: an instrument for measuring quality of life of adults with sickle cell disease

In recent years, there has been a growing interest in the assessment of quality of life (QOL) issues, particularly in chronic debilitating conditions. Several instruments have been developed, tested, and validated in the general population and in other chronic diseases; however, few studies have examined QOL issues in adults with sickle cell disease (SCD). We developed Sickle Cell Impact Measurement Scale (SIMS), an instrument for measuring the QOL of adults with SCD. The 142-item multi-dimensional SIMS questionnaire was developed using 4 validated instruments and additional questions based upon recommendations of patient focus groups. The SIMS was self-administered to 106 SCD and 45 rheumatoid arthritis (RA) patients over 4 sites. SIMS was evaluated on measures of both internal consistency and construct validity. Item reduction was performed based on results of factor analysis. The SIMS achieved good internal consistency, with a Cronbach's alpha coefficient reported of 0.86, and distinguished between patients with SCD and RA. Overall, QOL did not differ significantly among SCD and RA patients. However, SCD patients scored higher in both physical and social domains, which was expected and reflected the differences in the pathophysiology of each disease. The SIMS is a reliable, valid, and responsive questionnaire, which functions well as a discriminative instrument for the measure of health-related QOL (HRQOL) of adults with SCD. The SIMS is currently being administered to adults with SCD across several centers for further validation to become a disease-specific, global QOL instrument.     

Health-related quality of life in asthma

One aim of caring for adults and children with asthma should be the identification and treatment of the functional impairments that are troublesome to these patients in their daily lives. Studies have shown that correlations between measures of clinical asthma severity and control and health-related quality of life (HRQL) impairment are only weak to moderate. Therefore, HRQL must be measured directly. In recent years, HRQL questionnaires have been developed and validated to measure the functional (physical, social, emotional, and occupational) impairments that are important to both adults and children with asthma. Most questionnaires are now available in a range of languages. More recently, methods have been developed for the clinical interpretation on HRQL data. Assessment of asthma-specific HRQL can be included in both clinical trials and clinical practice, in conjunction with the conventional measures of airway function, to provide a complete picture of patients' health status.     

Health-related quality of life: a primer for gastroenterologists

The evolution of health care has required physicians to evaluate more critically the impact of interventions on their patients' well-being. Prior clinical interventions focused primarily on biochemical and histological endpoints. These outcomes frequently were tenuously linked to patient benefit. Recently there has been a movement toward patient-oriented outcomes, including health-related quality of life (HRQL). The medical literature now frequently describes the effects of therapies on HRQL. Gastroenterologists need to understand the concepts behind HRQL and the use and utility of the various instruments employed to measure this outcome. The purpose of this article is: 1) to define the concept of health-related quality of life (HRQL); 2) to assess when measurement of HRQL can guide clinical decision-making; 3) to describe the desired properties of an HRQL instrument; and 4) to distinguish types of HRQL instruments. We discuss the varied definitions of HRQL and the clinical scenarios in which they are important. The psychometric properties of HRQL instruments, including validity, reliability, responsiveness, sensitivity, and coverage are defined and discussed. The types of instruments such as health profile, time trade-off, and standard gamble are contrasted. Finally, we compare generic and disease-specific instruments regarding their uses, strengths, and weaknesses. HRQL reflects patients' perceptions of disease and its impact on health status. It is becoming an increasingly important endpoint in therapeutic trials. By understanding its components and how it can meaningfully be measured, gastroenterologists may be better able to optimize the benefit patients receive from their medical interventions.     

Quality of life measures for fecal incontinence and their use in children

BACKGROUND: Fecal incontinence is a common problem within society from childhood through to the elderly. Its clinical assessment has focussed on severity and frequency of soiling episodes but it is increasingly recognized to have an impact on physical, psychological and social well-being (quality of life [QOL]). This is likely to be particularly important in childhood. The aim of the present study was to critically evaluate the development and application of disease-specific QOL measures, focusing particularly on their use in children. METHODS: Generally recognized disease-specific QOL measures for fecal incontinence were identified and their generation and validation were critically evaluated. RESULTS: Six instruments were identified: Ditesheim and Templeton QOL Scoring System, Manchester Health Questionnaire, Hirschsprung's Disease/Anorectal Malformation Quality of Life Questionnaire (HAQL), Gastrointestinal Quality of Life Index (GIQLI), Fecal Incontinence TyPE Specification, and the Fecal Incontinence Quality of Life Scale (FIQL). Although the FIQL appeared to be the better tool for adults with fecal incontinence because it was brief and had the best validity and reliability, it needed further modification to become appropriate for use in children. In particular, items relating to sexual activity were inappropriate. CONCLUSION: Neither the FIQL nor other disease-specific instruments met basic psychometric standards for use in children with fecal incontinence. Substantial revision of currently available instruments will be required to meet the needs of this population.     

Nutritional risk predicts quality of life in elderly community-living Canadians

BACKGROUND: Although nutrition parameters have been linked to quality of life (QOL), few studies have determined if nutritional risk predicts changes in QOL over time in older adults. METHODS: 367 frail older adults were recruited from 23 service agencies in the community. Baseline interview included nutritional risk as measured by SCREEN (Seniors in the Community: Risk Evaluation for Eating and Nutrition), as well as a wide variety of covariates. Participants were contacted every 3 months for 18 months to determine QOL as measured by three questions from the Behavioral Risk Factor Surveillance System (BRFSS), a general whole-life satisfaction question, and a general change in QOL question. "Good physical health days" from the BRFSS was the focus of bivariate and multivariate analyses, adjusting for influential covariates. RESULTS: Seniors with high nutritional risk had fewer good physical health days and whole-life satisfaction at each follow-up point compared with those at low risk. In general, participants reported decreases in general QOL from baseline, with those in the moderate nutritional risk category most likely to report this change. Nutritional risk predicted change in good physical health days over time. Other important covariates include: gender, number of health conditions, perceived health, and age. CONCLUSIONS: Nutritional risk is an independent predictor of change in health-related QOL. The results also indicate a relationship between nutrition and the more holistic view of QOL. Evaluation studies of interventions for older adults need to include QOL measures as potential outcomes to further demonstrate the benefits of good nutrition.     

Quality of life in children with systemic lupus erythematosus

Systemic lupus erythematosus (SLE) in children is a chronic multi-system disease with wide ranging effects on their quality of life (QOL). While SLE’s impact on different arenas of life and well-being has been extensively examined in the adult population, its effect on children has not received adequate attention. This paper briefly discusses the multi-dimensional aspect of QOL, the biopsychosocial implica-tions of SLE, factors complicating QOL measurement in the affected population, and the different generic and disease-specific scales used for measuring QOL and related constructs, and it also highlights the need for SLE-specific pediatric QOL instruments.     

A model of quality of life in the patients with Crohn's disease]

PURPOSE: To identify the integrated impact of psychological, social, and clinical factors onto the quality of life (QOL) in the patients with Crohn's disease. SUBJECTS AND METHODS: Two hundred twenty two out-patients participated in a cross-sectional questionnaire survey in which health-related QOL (SF36), disease-specific symptoms, psychological adaptation and social support were measured. Multi-variable regression models were used to test the impact of clinical, psychological, and social factors on the patient's QOL and symptom reports. RESULTS: The patient's symptoms and health-related QOL were significantly associated not only with disease activities, but also with the patient's psychological adaptation and the quality of social support. CONCLUSION: The results strongly suggest that a psychoeducational intervention may be useful in combination with a clinical intervention to improve the patient's QOL.     

Fibrillation atriale : parmi les enjeux cliniques,la qualité de vie

Atrial fibrillation (AF) patients’quality of life (QOL), as measured with generic or disease-specific instruments, is impaired. Age, sex and comorbidity impact QOL scores in AF patients. Therapeutic interventions have tried to improve QOL in AF patients with mitigated results.     

Why should we care about quality of life in persons with haemophilia?

The very high cost of haemophilia care, including the increase in use of factor prophylaxis in both children and adults requires that funders of clotting factor concentrates require objective measures of health, such as joint status and quality of life (QOL). Many clinical trials, especially those for licensing of new products, are including QOL instruments in their protocols to evaluate the patients' perspective of wellbeing before and during therapy. This article gives a perspective on QOL the importance of QOL measurement in the field of haemophilia and its impact on patient outcome.     

Measurement of health-related quality of life in the national emphysema treatment trial

PURPOSES: To evaluate two generic and two disease-specific measures of health-related quality of life (QOL) using prerandomization data from the National Emphysema Treatment Trial (NETT). METHOD: The analyses used data collected from the 1,218 subjects who were randomized in the NETT. Patients completed evaluations before and after completion of the prerandomization phase of the NETT pulmonary rehabilitation program. Using data obtained prior to participation in the rehabilitation program, QOL measures were evaluated against physiologic and functional criteria using correlational analysis. The physiologic criteria included estimates of emphysema severity based on FEV(1) and measures of Pao(2) obtained with the subject at rest and breathing room air. Functional measures included the 6-min walk distance (6MWD), maximum work, and hospitalizations in the prior 3 months. RESULTS: Correlation coefficients between QOL measures ranged from -0.31 to 0.70. In comparison to normative samples, scores on general QOL measures were low, suggesting that the NETT participants were quite ill. All QOL measures were modestly but significantly correlated with FEV(1), maximum work, and 6MWD. Patients who had stayed overnight in a hospital in the prior 3 months reported lower QOL on average than those who had not been hospitalized. There were significant improvements for all QOL measures following the rehabilitation program, and improvements in QOL were correlated with improvements in 6MWD.Comment: The disease-specific and general QOL measures used in the NETT were correlated. Analyses suggested that these measures improved significantly following the rehabilitation phase of the NETT.     

Quality of life in children and adults with constipation

This review summarises the literature on quality of life (QOL) assessments in both children and adults with functional constipation. Studies of adults with constipation include subjects from both tertiary care centres and population-based surveys whereas there are no population-based studies in children. The preponderance of evidence indicates that the adverse effects of chronic constipation on QOL in both children and adults are comparable to that seen in other chronic gastrointestinal and non-gastrointestinal disorders. There are no data on the effect of treatment of children with constipation with regard to QOL whereas several studies indicate that successful treatment of constipation in adults has a favourable effect on QOL. The emerging concept in the treatment of chronic constipation is to measure both objective measures such as frequency and ease of defecation and subjective parameters such as QOL.     

Health status: what does it mean for payers and patients?

Disturbances to health can be divided broadly into limitations of basic activities of daily living (washing, dressing, etc.) that are common to all patients and other limitations that depend on individual circumstances. A distinction should be drawn between health status and health-related quality of life. Health status questionnaires are standardized for "typical patients," and this should be borne in mind when interpreting such scores from studies that give an average result using population-based measurements. Such studies give a good indication to payers of the average effects of a treatment, but provide no indication other than probability of benefit to individuals. This applies even more with health improvements that manifest uniquely in each patient. Two widely used disease-specific questionnaires in chronic obstructive pulmonary disease-the Chronic Respiratory Questionnaire and the St. George's Respiratory Questionnaire-are health status, rather than quality of life, instruments. Health status scores from questionnaires provide measures of the effects of disease, not measures of the disease itself. The relationship between high health status score and increased risk of dying is due to the fact that both reflect underlying disease activity. In therapeutic studies, health status improves because the underlying disease activity has been moderated by therapy. Improved health does not improve mortality or morbidity per se. It is also important to appreciate that the impact of any measured change in health may also be determined by the patient's baseline state.     

Quality of life in adults following bone marrow transplantation during childhood

Summary:Quality of life (QOL) was assessed in 22 young adults, 14 years - on average- after having received bone marrow transplantation (BMT) during childhood at the Leiden University Medical Center. All were disease-free and >16 years when interviewed. The sickness impact profile and the Medical Outcome Study 36-item Short Form Health Survey were used as generic questionnaires in the assessment of QOL. The Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale (FACT-BMT) was used as a disease-specific measure of QOL. Coping was assessed by means of the Utrecht coping list. BMT-related variables were obtained from medical files. Of the generic QOL measures, most results fell within the normal range of functioning, although some illness-related impairment was reported on subscales for general and work-related functioning. Compared to a reference sample of patients who had received BMT as adults, patients involved in this study scored significantly higher on the 'emotional well-being' subscale of the FACT-BMT, indicating significantly better emotional functioning. The age at BMT and total body irradiation (TBI) were not related to patients' QOL. We can conclude that at long term, having received BMT during childhood does not negatively affect the QOL of patients.Bone Marrow Transplantation (2004) 33, 329-336. doi:10.1038/sj.bmt.1704345 Published online 1 December 2003     

The relationship of inflammatory bowel disease type and activity to psychological functioning and quality of life.

BACKGROUND & AIMS: We aimed to assess the relationship of disease type and disease activity with psychological functioning and quality of life (QOL) in a population-based cohort of patients with recently diagnosed inflammatory bowel disease (IBD). METHODS: A total of 388 individuals diagnosed within 7 years were recruited from a population-based registry of IBD patients for the Manitoba IBD Cohort Study. Participants completed a clinical interview and standardized self-report measures of positive and negative psychological functioning, and QOL. Disease activity was determined by symptom self-report over the prior 6 months; Harvey-Bradshaw or Powell-Tuck disease activity indices also were used. Disease type was determined through chart verification. RESULTS: Seventy-four percent of Crohn's disease and 66% of ulcerative colitis participants had active disease during the previous 6 months. Multivariate regression showed that those with active disease had higher levels of distress, health anxiety, and perceived stress, lower social support, well-being and mastery, and poorer disease-specific QOL, relative to those with inactive disease. Disease type was not contributory to psychological functioning or QOL. Pain anxiety (fear of pain) and pain-specific catastrophizing were not associated with disease activity, after controlling for other psychological variables. Participants with either active or inactive disease had suboptimal general QOL. CONCLUSIONS: Ulcerative colitis and Crohn's disease participants were not differentiated in their psychological profiles. Given the strong association between disease-specific QOL, psychological functioning, and disease activity, it is important to be aware of related difficulties in patients with active IBD. There is a continued impact on QOL by the disease, even when it is inactive.     

Measuring health-related quality of life in diabetic peripheral neuropathy: a systematic review

We undertook a systematic review of disease-specific measures of health-related quality of life (HRQL) in diabetic peripheral neuropathy (DPN) to appraise the scientific (psychometric) evidence and make recommendations about the best instrument(s) to use. DPN is a common complication of diabetes mellitus. A need to consider the broad impact of DPN, rather than just pain and the increasingly recognised need to assess patient-reported outcomes such as HRQL in evaluating healthcare has led to a demand for rigorous outcome measures. To identify appropriate disease-specific measures, we searched four databases: PubMed, Embase, PsycINFO and CINAHL Plus. Data were extracted from each article using a standard data extraction form and the psychometric properties of each HRQL measure were reviewed. We identified three DPN-specific measures of HRQL: PN-QOL-97, Norfolk QOL-DN, NeuroQoL. All three measures satisfy at least one criterion for both reliability and validity, though all also have some disadvantages. Where there is no requirement for multi-language versions, the PN-QOL-97 is a useful instrument. Studies that involve multiple languages would need to use the shorter QOL-DN but would also need to incorporate complementary instruments to address the psychological and emotional impact of DPN.     

Development and validation of a measure of disease-specific quality of life in young children with haemophilia

No disease-specific tool for measuring health-related quality of life (HRQL), an important outcome when assessing medical treatment, has been developed for children with haemophilia. The goal of this study was to develop a parent-administered questionnaire for evaluating quality of life (QOL) in paediatric haemophilia patients between 2 and 6 years of age. After interviewing physicians (5), nurses (5) and parents (10) of children with haemophilia aged between 2 and 6 years, 92 questions were developed and pilot-tested with parents (44) of children with haemophilia to create a 39-question instrument that assessed somatic symptoms, physical functioning, sleep disturbance, stigma, social functioning, fear/resentment, mood/behaviour, restrictions, treatment upset, haemophilia concern and energy level. Reliability and validity were evaluated with 103 parents of children with haemophilia and parents of 249 age- and gender-matched healthy children. Estimates of scale reliability (internal consistency) for eight multi-item scales ranged from 0.73 to 0.94. Results showed construct validity (correlations with age, severity of haemophilia, treatment type, days absent and days confined to bed) and correlated with two general, paediatric quality-of-life instruments (Impact on Family Scale and Functional Status II). Discriminant validity was demonstrated by comparing scores between patients receiving/not receiving prophylactic therapy and between haemophilia patients and healthy controls. This disease-specific HRQL measure should be of use in clinical trials and general practice to better understand disease and treatment impacts in young children with haemophilia.     

Health‐related quality of life following haematopoietic cell transplantation: patient education,evaluation and intervention

Health‐related quality of life (QOL) is a vital concern in the pre‐treatment consent process and post‐treatment care of recipients of haematopoietic cell transplantation (HCT). We propose that comprehensive care of such patients requires an integration of knowledge of the impact of HCT on QOL, assessment of QOL, as well as resources available for intervention. This knowledge may significantly improve patient care when incorporated into daily clinical practice in the transplant setting. As a framework for this approach, this article reviews the literature on QOL after allogeneic and autologous HCT for adults with haematological malignancies. We then discuss evidence in support of the beneficial impact of clinical QOL assessment, and finally evaluate behavioural interventions that show promise to maintain or improve QOL after HCT.