Showing papers on "Quality of life published in 2001"

Quality-of-life measures in chronic diseases of childhood

Abstract: Scope of the report This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? Objectives (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. Method Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. Results Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)

Measuring quality of life: Is quality of life determined by expectations or experience?

Abstract: This is the first in a series of five articles The way we think about health and health care is changing. The two factors driving this change are the recognition of the importance of the social consequences of disease and the acknowledgement that medical interventions aim to increase the length and quality of survival. For these reasons, the quality, effectiveness, and efficiency of health care are often evaluated by their impact on a patient's “quality of life.” There is no consensus on the definition of quality of life as it is affected by health (health related quality of life). Definitions range from those with a holistic emphasis on the social, emotional, and physical wellbeing of patients after treatment1 to those that describe the impact of a person's health on his or her ability to lead a fulfilling life.2 This article assumes it to be those aspects of an individual's subjective experience that relate both directly and indirectly to health, disease, disability, and impairment. The central concern of this paper is the tendency to regard the quality of life as a constant. We contend that perceptions of health and its meaning vary between individuals and within an individual over time. People assess their health related quality of life by comparing their expectations with their experience. We propose a model of the relation between expectations and experience and use it to illustrate problems in measuring quality of life. The implications of these concepts for the use of quality of life as an indicator of the need for treatment and as an outcome of care are discussed. #### Summary points Health related quality of life is the gap between our expectations of health and our experience of it Perception of quality of life varies between individuals and is dynamic within them People with different …

The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the M. D. Anderson dysphagia inventory.

Abstract: Objective To design a reliable and validated self-administered questionnaire whose purpose is to assess dysphagia's effects on the quality of life (QOL) of patients with head and neck cancer. Design Cross-sectional survey study. Methods Focus groups were convened for questionnaire development and design. The M. D. Anderson Dysphagia Inventory (MDADI) included global, emotional, functional, and physical subscales. One hundred consecutive adult patients with a neoplasm of the upper aerodigestive tract who underwent evaluation by our Speech Pathology team completed the MDADI and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). Speech pathologists completed the Performance Status Scale for each patient. Validity and reliability properties were calculated. Analysis of variance was used to assess how well the MDADI discriminated between groups of patients. Results The internal consistency reliability of the MDADI was calculated using the Cronbach alpha coefficient. The Cronbach alpha coefficients of the MDADI subscales ranged from 0.85 to 0.93. Test-retest reliability coefficients of the subscales ranged from 0.69 to 0.88. Spearman correlation coefficients between the MDADI subscales and the SF-36 subscales demonstrated construct validity. Patients with primary tumors of the oral cavity and oropharynx had significantly greater swallowing disability with an adverse impact on their QOL compared with patients with primary tumors of the larynx and hypopharynx (P Conclusions The MDADI is the first validated and reliable self-administered questionnaire designed specifically for evaluating the impact of dysphagia on the QOL of patients with head and neck cancer. Standardized questionnaires that measure patients' QOL offer a means for demonstrating treatment impact and improving medical care. The development and validation of the MDADI and its use in prospective clinical trials allow for better understanding of the impact of treatment of head and neck cancer on swallowing and of swallowing difficulty on patients' QOL.

A review of measures of quality of life for children with chronic illness

Abstract: AIMS—To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures. METHODS—Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria. RESULTS—Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status. CONCLUSIONS—We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.

The burden of musculoskeletal diseases in the general population of Spain: results from a national survey

Abstract: Objective—The objective of the EPISER study was to estimate the prevalence of rheumatoid arthritis (RA), low back pain, hand and knee osteoarthritis (OA), and fibromyalgia in the adult Spanish population, and to assess the impact of these diseases on function and quality of life, and use of health and social resources Methods—2998 subjects aged 20 years or above were randomly selected by stratified multistage cluster sampling from the censuses of 20 municipalities Trained rheumatologists carried out structured visits at which subjects were asked about rheumatic symptoms and sociodemographic characteristics, completed validated instruments for measuring function (HAQ) and quality of life (SF-12), and underwent a standardised physical examination Cases were defined by previously validated criteria Results—The estimated prevalences with 95% confidence intervals were as follows: RA lifetime cumulative: 05% (03 to 09); low back pain: 148% (122 to 174); symptomatic knee OA: 102% (85 to 119); hand OA: 62% (59 to 65); fibromyalgia: 24% (15 to 32) Most conditions significantly impaired function and quality of life Conclusions—The EPISER study has internal and external validity for application of the results to the adult Spanish population The diseases studied aVect a significant proportion of the population, with various degrees of impact on disability and quality of life resulting in a significant number of physician visits, work disability, and medication use (Ann Rheum Dis 2001;60:1040‐1045)

Quality of life and obesity

Abstract: Interest in the quality of life of patients with different diseases continues to grow. Recent years have witnessed a dramatic rise in the prevalence of obesity worldwide, stimulating interest in the health and quality of life consequences of this phenomenon. The body of research on the quality of life of obese individuals has grown to a point that a review of this literature is warranted. Numerous studies have demonstrated that obese persons experience significant impairments in quality of life as a result of their obesity, with greater impairments associated with greater degrees of obesity. Weight loss has been shown to improve quality of life in obese persons undergoing a variety of treatments. Further research is needed to clarify whether quality of life differs among subsets of obese persons. Until recently, there has been little standardization of quality of life measures in obesity. The SF-36 has been used in a number of studies of obese persons. Several obesity-specific instruments have also been developed and have shown great promise. The quality of life of obese individuals is an important issue that should be included in weight management treatment and research.

Are quality of life measures patient centred

Abstract: This is the third in a series of five articles Quality of life measures are increasingly used to supplement objective clinical or biological measures of disease to assess the quality of service, the need for health care, the effectiveness of interventions, and in cost utility analyses. Their use reflects a growing appreciation of the importance of how patients feel and how satisfied they are with treatment in addition to the traditional focus on disease outcomes. In this respect, quality of life measures capture patients' perspectives of their disease and treatment, their perceived need for health care, and their preferences for treatment and outcomes. They are hailed as being patient centred. But the challenge in measuring quality of life lies in its uniqueness to individuals. Many of the existing measures of quality of life fail to take account of this by imposing standardised models of quality of life and preselected domains; they are thus measures of general health status rather than quality of life. Questions arise as to whether such measures are truly patient centred and to what extent they actually represent the quality of life of individual patients or groups of patients. Do they simply describe a patient's health in terms of what health professionals or society believe constitutes quality of life for people who are ill, something that may include factors that have little relevance to or importance for patients? This paper explores the extent to which standardised quality of life measures accurately quantify an individual patient's quality of life. It debates whether newer, individualised approaches, which allow patients to define their quality of life in relation to their goals and expectations, are more appropriate. #### Summary points Quality of life is an individual construct and measures should take account of this Many widely used measures are not patient centred because of …

Association Among SF36 Quality of Life Measures and Nutrition, Hospitalization, and Mortality in Hemodialysis

Abstract: Patients on maintenance hemodialysis (MHD) often show substantial reductions in quality of life (QoL). The SF36 (Short Form with 36 questions), a well-documented, self-administered QoL scoring system that includes eight independent scales and two main dimensions, has been widely used and validated. In 65 adult outpatients on MHD, the SF36 and its scales and dimensions, scored as a number between 0 and 100, and the nutritional and inflammatory state measured by subjective global assessment, near-infrared (NIR) body fat, body mass index (BMI), and pertinent laboratory values, including hemoglobin, albumin, and C-reactive protein were assessed. Twelve-month prospective hospitalization rates and mortality were used as the clinical outcomes. Multivariate (case-mix) adjusted correlation coefficients were statistically significant between SF36 scores and serum albumin and hemoglobin concentrations. There were significant inverse correlations between SF36 scores and the BMI and NIR body fat percentage. Hypoalbuminemic, anemic, and obese patients on MHD had a worse QoL. Prospective hospitalizations correlated significantly with the SF36 total score and its two main dimensions (r between -0.28 and -0.40). The Cox proportional regression relative risk of death for each 10 unit decrease in SF36 was 2.07 (95% CI, 1.08 to 3.98; P = 0.02). Of the eight components and two dimensions of the SF36, the Mental Health dimension and the SF36 total score had the strongest predictive value for mortality. Thus, in patients on MHD the SF36 appears to have significant associations with measures of nutritional status, anemia, and clinical outcomes, including prospective hospitalization and mortality. Even though obesity, unlike undernutrition, is not generally an indicator of poor outcome in MHD, the SF36 may detect obese patients on MHD at higher risk for morbidity and mortality.

Fatigue and quality of life outcomes of exercise during cancer treatment.

Abstract: Purpose: Despite the recognition of fatigue as a common and distressing symptom during cancer treatment, there are few evidence-based interventions available to manage such fatigue. The purpose of this multi-institutional pilot study was to explore the effects of a home-based moderate walking exercise intervention on fatigue, physical functioning, emotional distress, and quality of life (QOL) during breast cancer treatment. Description of study: Fifty-two women were recruited from five university hospital outpatient departments for this pilot study with an experimental design. Subjects were randomly assigned to the walking program or to usual care during adjuvant chemotherapy or radiation therapy for breast cancer. Symptoms, physical functioning, and QOL were measured at baseline, midtreatment, and at the end of treatment. Results: Women who exercised at least 90 minutes per week on 3 or more days reported significantly less fatigue and emotional distress as well as higher functional ability and QOL than women who were less active during treatment. Clinical implications: A home-based walking exercise program is a potentially effective, low-cost, and safe intervention to manage fatigue and to improve QOL during adjuvant chemotherapy or radiation therapy for breast cancer. This health-promoting self-care activity needs further testing in large randomized clinical trials.

The association of sleep-disordered breathing and sleep symptoms with quality of life in the Sleep Heart Health Study.

Abstract: This study assessed the extent to which sleep-disordered breathing (SDB), difficulty initiating and maintaining sleep (DIMS), and excessive daytime sleepiness (EDS) were associated with impairment of quality of life (QoL) using the SF-36. Participants (n=5,816; mean age=63 years; 52.5% women) were enrolled in the nation-wide population-based Sleep Heart Health Study (SHHS) implemented to investigate sleep-disordered breathing as a risk factor in the development of cardiovascular disease. Each transformed SF-36 scale was analyzed independently using multiple logistic regression analysis with sleep and other potential confounding variables (e.g., age, ethnicity) included as independent variables. Men (11.6%) were significantly more likely to have SDB compared to women (5.6%), while women (42.4%) were significantly more likely to report DIMS than men (32.5%). Vitality was the sole SF-36 scale to have a linear association with the clinical categories of SDB (mild, moderate, severe SDB). However, individuals with severe SDB indicated significantly poorer QoL on several SF-36 scales. Both DIMS and EDS were strongly associated with reduced QoL even after adjusting for confounding variables for both sexes. Findings suggest 1) mild to moderate SDB is associated with reduced vitality, while severe SDB is more broadly associated with poorer QoL, 2) subjective sleep symptoms are comprehensively associated with poorer QoL, and 3) SF-36 mean score profiles for SDB and sleep symptoms are equivalent to other chronic diseases in the U.S. general population.

Mortality and quality of life 12 months after myocardial infarction: effects of depression and anxiety.

Abstract: OBJECTIVE The purpose of this study was to determine the impact of symptoms of depression and anxiety on mortality and quality of life in patients hospitalized for acute myocardial infarction (MI). METHODS The Beck Depression Inventory and the State-Trait Anxiety Inventory were completed by 288 patients hospitalized for MI. Twelve-month survival status was ascertained, and quality of life among survivors was assessed at 12 months using the Dartmouth COOP charts. RESULTS Thirty-one (10.8%) patients died, 27 of cardiac causes, during the 12-month follow-up. Symptoms of depression and anxiety predicted neither cardiac nor all-cause mortality. Severity of infarction and evidence of heart failure predicted both cardiac and all-cause mortality. The same findings emerged from supplementary analyses of data from patients who died after discharge from the hospital. Symptoms of depression and anxiety, measured at entry, predicted 12-month quality of life among survivors, as did gender, partner status, employment status, living alone, previous frequency of exercise, and indices of disease severity (Killip class and Peel Index). In a multiple regression model in which all of these variables were entered, initial depression scores provided the best independent prediction of quality of life, although living alone, severity of infarction, and state anxiety also entered the model. CONCLUSIONS Symptoms of depression and anxiety did not predict either cardiac or all-cause mortality after MI, but they did predict quality of life among those who lived to 12 months.

The Association of Sleep-Disordered Breathing and Sleep Symptoms with Quality of Life in the Sleep Heart Health Study QUALITY OF LIFE IN THE SLEEP HEART HEALTH STUDY

Abstract: This study assessed the extent to which sleep-disordered breathing (SDB), difficulty initiating and maintaining sleep (DIMS), and excessive daytime sleepiness (EDS) were associated with impairment of quality of life (QoL) using the SF-36. Participants (n=5,816; mean age=63 years; 52.5% women) were enrolled in the nation-wide population-based Sleep Heart Health Study (SHHS) implemented to investigate sleep-disordered breathing as a risk factor in the development of cardiovascular disease. Each transformed SF-36 scale was analyzed inde- pendently using multiple logistic regression analysis with sleep and other potential confounding variables (e.g., age, ethnicity) included as inde- pendent variables. Men (11.6%) were significantly more likely to have SDB compared to women (5.6%), while women (42.4%) were significant- ly more likely to report DIMS than men (32.5%). Vitality was the sole SF-36 scale to have a linear association with the clinical categories of SDB (mild, moderate, severe SDB). However, individuals with severe SDB indicated significantly poorer QoL on several SF-36 scales. Both DIMS and EDS were strongly associated with reduced QoL even after adjusting for confounding variables for both sexes. Findings suggest 1) mild to moderate SDB is associated with reduced vitality, while severe SDB is more broadly associated with poorer QoL, 2) subjective sleep symptoms are comprehensively associated with poorer QoL, and 3) SF-36 mean score profiles for SDB and sleep symptoms are equivalent to other chron- ic diseases in the U.S. general population.

Chronic Pain and Its Impact on Quality of Life in Adolescents and Their Families

Abstract: OBJECTIVE: To study chronic pain not caused by somatic disease in adolescents and the effect of pain on the quality of life of the adolescents and their families. METHODS: One hundred twenty-eight youngsters (12-18 years) who had reported chronic pain kept a 3-week diary of their pain and completed a questionnaire on quality of life. Their mothers completed a questionnaire on the impact of their youngster's pain on the family. RESULTS: The most prevalent pains were limb pain, headache, abdominal, and back pain. The pain increased during the day, with the highest frequency around dinner time and the highest intensity around bedtime. Girls reported more intense and more frequent pain than boys. The higher the intensity and frequency of the pain, the lower the self-reported quality of life of the female or male adolescent, especially regarding psychological functioning (e.g. feeling less at ease), physical status (a greater incidence of other somatic complaints), and functional status (more impediments to leisure and daily activities). Chronic pain also had a negative impact on family life. The mothers reported restrictions, particularly in social life, and problems dealing with the stress of the adolescent's pain. CONCLUSIONS: Chronic pain, not caused by somatic disease, was present to a higher degree in girls; the pain increased during the day and had a negative impact on quality of life of the adolescents and the family. There is a need for future research aimed at identifying risk factors for chronic pain and pain-associated quality of life in children and adolescents.

Good Metabolic Control Is Associated With Better Quality of Life in 2,101 Adolescents With Type 1 Diabetes

Abstract: OBJECTIVE —It is unclear whether the demands of good metabolic control or the consequences of poor control have a greater influence on quality of life (QOL) for adolescents with diabetes. This study aimed to assess these relations in a large international cohort of adolescents with diabetes and their families. RESEARCH DESIGN AND METHODS —The study involved 2,101 adolescents, aged 10–18 years, from 21 centers in 17 countries in Europe, Japan, and North America. Clinical and demographic data were collected from March through August 1998. HbA 1c was analyzed centrally (normal range 4.4–6.3%; mean 5.4%). Adolescent QOL was assessed by a previously developed Diabetes Quality of Life (DQOL) questionnaire for adolescents, measuring the impact of diabetes, worries about diabetes, satisfaction with life, and health perception. Parents and health professionals assessed family burden using newly constructed questionnaires. RESULTS —Mean HbA 1c was 8.7% (range 4.8–17.4). Lower HbA 1c was associated with lower impact ( P P P P P P P P P P CONCLUSIONS —In a multiple regression model, lower HbA 1c was significantly associated with better adolescent-rated QOL on all four subscales and with lower perceived family burden as assessed by parents and health professionals.

SF-36: evaluation of quality of life in severe and mild insomniacs compared with good sleepers.

Abstract: Objective Despite many studies, the impact of chronic insomnia on daytime functioning is not well understood. The aim of our study was to detect this impact by evaluating quality of life (QoL) using a validated instrument, the 36-item Short Form Health Survey of the Medical Outcomes Study (SF-36), in three matched groups of severe insomniacs, mild insomniacs, and good sleepers selected from the general population. Methods Three matched groups of 240 severe insomniacs, 422 mild insomniacs, and 391 good sleepers were recruited from the general French population after eliminating those with DSM-IV criteria for anxiety or depression. All subjects were asked to complete the SF-36. Scores for each QoL dimension were calculated and compared statistically among the three groups. Results Severe insomniacs had lower QoL scores in eight dimensions of the SF-36 than mild insomniacs and good sleepers. Mild insomniacs had lower scores in the same eight dimensions when compared with good sleepers. No dimension was significantly more altered than the other. Conclusions The mental health status and role of emotional QoL dimensions were worse in severe and mild insomniacs than in good sleepers. This result held even though we screened for psychiatric diseases, which shows a clear interrelation between insomnia and emotional state. General health status was also worse in severe and mild insomniacs than in good sleepers. However, we could conclude only that insomnia was related to a worse health status and not whether it was a cause or consequence of this worse health status. Finally, the degradation of QoL scores was correlated with the severity of insomnia.

Health-related quality of life three years after diagnosis of head and neck cancer--a longitudinal study.

Abstract: Purpose To examine health-related quality of life (HRQL) of all head and neck cancer patients from diagnosis until 3 years later and to analyze its dependence on tumor site and other patient characteristics. Subjects and Methods Two hundred thirty-two patients (mean age 61 years; 70% men) were included and followed with clinical measures and mailed standardized HRQL questionnaires (The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30), the EORTC QLQ-Head and Neck Cancer module (QLQ-H&N35), and the Hospital Anxiety and Depression Scale (HADS). Results After 3 years 66 % of the patients were alive and 88% of these completed the study. The HRQL was worse during treatment and returned slowly thereafter to pretreatment values with few exceptions. After 3 years the best improvement was found for mental distress, followed by a significant global quality of life improvement and reduced pain compared with diagnosis. A significant deterioration was found for problems with dry mouth, senses, and teeth, as well as for opening the mouth wide (ie, they seemed to be related to the treatment given). There were few significant improvements between the 1- and 3-year follow-ups. Depression and physical functioning at diagnosis were independent predictors for global quality of life at 3 years. Patients who died during the study had a worse HRQL at diagnosis compared with patients completing the study. Patients with advanced disease (stage III + IV) scored worse than patients with small tumors for most of the HRQL domains. These differences increased over time. Few differences were found relating to gender and age. The pharyngeal cancer group scored worse compared with the other tumor sites, and these patients would probably benefit from a rehabilitation program right from diagnosis, including treatment for malnutrition and pain. Conclusions The largest HRQL changes for head and neck cancer patients are seen within the first year after diagnosis, with a significant deterioration just after finishing treatment. Thereafter, most of the variables return to pretreatment values. The significant problems with dry mouth, senses, and teeth after treatment are constant over time. © 2001 John Wiley & Sons, Inc. Head Neck 23: 113–125, 2001.

Who should measure quality of life

Abstract: This is the fourth in a series of five articles One of the reasons behind the rapid development of quality of life measures in health care has been the growing recognition of the importance of understanding the impact of healthcare interventions on patients' lives rather than just on their bodies. This is particularly important for patients with chronic, disabling, or life threatening diseases who live without the expectation of cure and have conditions that are likely to have an impact on their physical, psychological, and social wellbeing. Health professionals frequently make quality of life judgments when making decisions about the care of disabled patients,1 and the professional's view on expected quality of life is often the key factor in determining whether effective treatment for a life threatening condition will be given or withdrawn.2 Professionals' perceptions may, however, be at odds with those held by their patients.3 It is therefore important to ask patients to assess their own quality of life using one of a growing number of reliable and valid measures. Choosing an appropriate measure and using it in clinical practice can be problematic.4 Deciding to use a measure, however, presupposes that patients are able to assess their own quality of life and complete a quality of life measure. Some patients—and in some conditions many patients—are unable to do this because of cognitive impairments, communication deficits, severe distress caused by their symptoms, or because the quality of life measure is too burdensome physically or emotionally.5 These may be precisely the patients for whom information on quality of life is most needed to inform clinical decision making. Rather than lose all information on that patient, someone else (a family member or health professional) may be asked to act as a proxy or surrogate. In this paper …

Report of the Substudy Assessing the Impact of Neurocognitive Function on Quality of Life 5 Years After Cardiac Surgery

Abstract: Background and Purpose— The importance of perioperative cognitive decline has long been debated. We recently demonstrated a significant correlation between perioperative cognitive decline and long-term cognitive dysfunction. Despite this association, some still question the importance of these changes in cognitive function to the quality of life of patients and their families. The purpose of our investigation was to determine the association between cognitive dysfunction and long-term quality of life after cardiac surgery. Methods— After institutional review board approval and patient informed consent, 261 patients undergoing cardiac surgery with cardiopulmonary bypass were enrolled and followed for 5 years. Cognitive function was measured with a battery of tests at baseline, discharge, and 6 weeks and 5 years postoperatively. Quality of life was assessed with well-validated, standardized assessments at the 5-year end point. Results— Our results demonstrate significant correlations between cognitive funct...

Health-related quality of life of patients with psoriatic arthritis: a comparison with patients with rheumatoid arthritis.

Abstract: Objective To compare health-related quality of life (QOL) between patients with psoriatic arthritis (PsA) and patients with rheumatoid arthritis (RA), using the Medical Outcomes Study Short Form health survey (SF-36) and the Health Assessment Questionnaire (HAQ). Methods Both the SF-36 and the HAQ were administered to 107 PsA patients attending the University of Toronto Psoriatic Arthritis Clinic between January 1 and December 31, 1994, and to 43 RA patients attending a University of Toronto–affiliated RA clinic during the same period. Standardized assessments of disease activity and severity were also performed at each clinic visit. Logistic regression analysis was used to compare health-related QOL between PsA and RA. Results Both patient populations experienced lower physical health compared with that of a general population sample. The RA patients demonstrated more active inflammatory disease at the time of assessment than the PsA patients. The PsA patients were younger, and more were men. Logistic regression analyses showed that patients with PsA reported higher levels of vitality than patients with RA, even after adjusting for the observed differences in clinical and demographic characteristics. PsA patients, however, reported more role limitations due to emotional problems and more bodily pain after adjusting for the difference in vitality and other covariates. Conclusions Although both patient populations experienced reduced QOL, there were some meaningful differences in how the 2 conditions affect health-related QOL. Further, it appeared that there may be unique disabilities associated with the psoriasis dimension of PsA.

What is the impact of fecal incontinence on quality of life

Abstract: PURPOSE: The objective of this study was to determine at what point fecal incontinence affects quality of life. METHODS: In 35 patients who had anterior sphincter repair for fecal incontinence as a result of obstetric injury, continence evaluated by the Wexner score was compared with validated quality of life tests (Gastrointestinal Quality of Life Index and Medical Outcomes Study Short-Form General Health Survey). The questionnaires were sent by mail. Thirty-two patients responded. The Wexner score (0–20) was correlated with the Gastrointestinal Quality of Life Index and the Medical Outcomes Study Short-Form General Health Survey and matched with those of reference groups. RESULTS: The mean Wexner score was 8.8, corresponding with losing stools between once a week and once a month. The mean Gastrointestinal Quality of Life Index score was 105 (range, 48–136), which is significantly lower than the score found in a reference group of normal individuals. Medical Outcomes Study Short-Form General Health Survey scores were significantly lower in all six dimensions compared with the reference group. A Wexner score of 9 or higher was associated with a Gastrointestinal Quality of Life Index score of less than 105, which implies that patients were less mobile in the community and were confined to their homes. A similar correlation was found between a Wexner score higher than 9 and the Medical Outcomes Study Short-Form General Health Survey. CONCLUSIONS: A Wexner score of 9 or higher indicates a significant impairment of quality of life and can therefore be used in decision making.

The Infants' Dermatitis Quality of Life Index.

Abstract: Background The impact on quality of life (QOL) caused by atopic dermatitis (AD) has been quantified in children and adults using established QOL measures. However, these are not suitable for use in infants under the age of 4 years, when AD usually develops. Objectives To validate a new parent-generated QOL questionnaire, the Infants’ Dermatitis QOL Index (IDQOL), which measures the impact of AD on the infant, and to provide further validation of the Family Dermatitis Index (FDI), which measures the impact of a child’s dermatitis on the family. Methods Parents of 102 predominately caucasian infants under 4 years with AD (34 postal and 68 outpatients) were asked to complete the IDQOL and the FDI on two separate occasions to test for repeat validity. The Infants’ Behavioural Check List (BCL) was also given to the study group and to parents of 22 normal control infants. Post-treatment IDQOL and FDI questionnaires were obtained from 25 of the study group. Results The return rate for initial questionnaires was 87·3% (61 boys, 28 girls) and for retest 70·6%. The mean score for IDQOL was 7·89 and for FDI 8·87. Spearman rank correlation between the IDQOL and FDI was high (r = 0·87). Correlations of IDQOL and FDI with clinical severity assessment by parents were lower (r = 0·58 for IDQOL and r = 0·5 for FDI). Test–retest data for IDQOL and FDI confirmed repeatability, there being negligible differences between the pairs using the method of Bland and Altman. The three highest scoring questions for IDQOL referred to itching and scratching, mood change and sleep disturbance. For the FDI they were parental sleep disturbance, tiredness and exhaustion, and emotional distress. Post-treatment questionnaires from 25 patients indicated sensitivity to clinical change with both IDQOL and FDI. Parameters of behaviour measured using the BCL in 82 study infants and 22 controls showed greater problems with frequent night-time wakening (43% vs. 4·5%) and miserable mood changes (24·4% vs. 9%) in the study infants. Conclusions Initial validation of the IDQOL and further validation of the FDI show good test–retest repeatability and apparent sensitivity to change with treatment. The effect on health-related QOL as measured by these methods is poorly correlated with clinical severity, confirming that QOL measures should be used in conjunction with clinical measures for global assessments of disease impact. This work requires further validation but suggests that QOL measures may be useful as outcome measures in clinical practice and research. Their simple construction allows quick and easy use, which is particularly valuable in large-scale and postal studies.

The impact of blood glucose self-monitoring on metabolic control and quality of life in type 2 diabetic patients: an urgent need for better educational strategies.

Abstract: OBJECTIVE —The role of self-monitoring of blood glucose (SMBG) in type 2 diabetes is still a matter of debate. In the framework of a nationwide outcomes research program, we investigated the frequency of SMBG and its association with metabolic control and quality of life (QoL). RESEARCH DESIGN AND METHODS —The study involved 3,567 patients with type 2 diabetes who were recruited by 101 outpatient diabetes clinics and 103 general practitioners. Patients completed a questionnaire investigating SMBG practice and QoL (diabetes-related stress, diabetes health distress, diabetes-related worries, and Centers for Epidemiologic Studies-Depression scale). RESULTS —Data on SMBG were available for 2,855 subjects (80% of the entire study population). Overall, 471 patients (17%) stated that they tested their blood glucose levels at home ≥1 time per day, 899 patients (31%) tested their blood glucose levels ≥1 time per week, and 414 patients (14%) tested their blood glucose levels CONCLUSIONS —Our findings suggest that SMBG can have an important role in improving metabolic control if it is an integral part of a wider educational strategy devoted to the promotion of patient autonomy. In patients not treated with insulin, self-monitoring is associated with higher HbA 1c levels and psychological burden. Our data do not support the extension of SMBG to this group.

Randomized Trial of Coordinated Psychosocial Interventions Based on Patient Self-Assessments Versus Standard Care to Improve the Psychosocial Functioning of Patients With Cancer

Abstract: PURPOSE: To determine whether making patient-reported cancer needs, quality-of-life (QOL), and psychosocial information available to the health care team, allowing coordinated specifically targeted psychosocial interventions, resulted in reduced cancer needs, improved QOL, and increased satisfaction with care received. METHODS: Self-reported cancer needs, QOL, and psychosocial information was collected from 450 people with cancer, using standardized questionnaires via a touch-screen computer. For a randomly chosen two thirds, this information was made available to the health care team who coordinated targeted psychosocial interventions. Information from the remaining one third was not seen. Patients were assessed 2 and 6 months after randomization for changes in their cancer needs, QOL, and psychosocial functioning and satisfaction with overall care received. RESULTS: There were no significant differences between the two arms with respect to changes in cancer needs, QOL, or psychosocial functioning betwee...

Quality of life and oral function in patients treated with radiation therapy for head and neck cancer.

Abstract: Background Multiple oral complaints develop during radiation therapy for head and neck cancer, and quality of life is affected after treatment. The purpose of this investigation was to assess the quality of life, oral function, and oral symptoms in a cohort of patients during and after radiation therapy. Methods A general quality of life survey (the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30), with an added oral symptom and function scale was administered to a consecutive series of patients who received radiation therapy for head and neck malignant disease. Patients completed surveys at the beginning of radiation therapy, immediately after, and 6 months after treatment. Results and Discussion The questionnaire used in this study provides increased information regarding the oral and dental function that is frequently affected by radiation therapy. Results of this study indicate the need to determine oral dysfunction after head and neck cancer therapy, so that the most predictable cure or best palliation of the malignancy with the least impact on oral function and quality of life is chosen. Oral complications during and after radiation therapy for head and neck cancer are common and affect quality of life. Oral QOL does not return to pretreatment levels by 6 months after radiation therapy. This study supports the use of a general function scale such as the EORTC questionnaire with the addition of disease/site-specific scales to provide data on outcomes of therapy and on the complications associated with therapy. The EORTC QLQ 30 questionnaire with the oral assessment addendum provides a measure of the quality of life and oral function in head and neck cancer patients and may provide useful outcome measures for assessment of oral care prevention and management strategies in these patient populations. The results show that the questionnaire is responsive to change throughout the course of radiation therapy for head and neck cancer. © 2001 John Wiley & Sons, Inc. Head Neck 23: 389–398, 2001.

Factors associated with perceived quality of life many years after traumatic brain injury.

Abstract: Objectives To explore factors associated with perceived quality of life (QOL) 8 to 24 years after traumatic brain injury (TBI). Design Retrospective cohort study. Participants Two hundred seventy-five individuals who sustained moderate to severe TBI who were discharged from a rehabilitation hospital participated in this study. We interviewed consenting participants up to 24 years after injury. Outcome measures Self-rated Quality of Life Scale. Results Multivariate linear regression analyses revealed that perceived mental health, self-rated health, gender (women rating QOL higher), participation in work and leisure, and the availability of emotional support were significantly associated with QOL (P Conclusion The importance of designing ongoing support programs to further reintegrate TBI survivors several years after injury is discussed.