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PubMed2003

Using focus groups to determine what constitutes quality of life in clients receiving medical nutrition therapy: first steps in the development of a nutrition quality-of-life survey.

OBJECTIVE: As the first part of a multiphase process to develop a Nutrition Quality of Life (NQOL) survey, our objective was to identify items that later will be psychometrically evaluated for inclusion into the NQOL survey, a survey that can be used in routine practice to monitor the impact of medical nutrition therapy (MNT). DESIGN: We used a prospective, six-step iterative process involving focus groups, surveys, and consensus processes to build a conceptual framework to describe health-related quality of life in individuals receiving MNT, to identify items for inclusion in an NQOL survey, and to refine these items and the survey format. Subjects/Setting and Methods Items were generated from 65 patients in five geographically diverse locations participating in 10 focus groups and 46 dietitians in the same geographic locations participating in seven focus groups. Patients represented a variety of ages, ethnicities, and clinical and economic conditions. Dietitians were primarily from outpatient locations with both general and speciality practices. Sixty-one percent of the participants provided feedback via mailed surveys. Additional input was received from audience attendees at sessions at two national nutrition meetings. RESULTS: Based on comments generated in client and dietitian focus groups, we identified 50 items in six clusters: 9 items in food impact; 6, self-image; 10, psychological factors; 7, social/interpersonal; 9, physical; and 9, self-efficacy. Whenever possible, we developed items using the clients' own words. Clients, responding to the mailed survey, indicated that they took approximately 10 minutes to complete the NQOL survey. Applications/Conclusions At this time, dietitians may use the 50 questions to probe the impact of MNT on their clients' NQOL. However, psychometric and clinical testing will be necessary to further refine these items before the NQOL survey can be scored and used to measure the NQOL of patients at baseline, to monitor the impact of MNT over time, and to manage future MNT interventions by using an NQOL survey in a quality improvement program.

Adolescent↗
PubMed1999

Quality of life of women with urinary incontinence: further development of the incontinence quality of life instrument (I-QOL)

OBJECTIVES: To report on the further development of the Incontinence Quality of Life Instrument (I-QOL), a self-report quality of life measure specific to urinary incontinence (UI), including its measurement model, responsiveness, and effect size. METHODS: Incontinent female patients (141 with stress, 147 with mixed UI) completed the I-QOL and comparative measures at screening, pretreatment, and four subsequent follow-up visits during participation in a multicenter, double-blind, placebo-controlled, randomized trial assessing the efficacy of duloxetine. Psychometric testing followed standardized procedures. RESULTS: Factor analysis confirmed an overall score and three subscale scores (avoidance and limiting behaviors, psychosocial impacts, and social embarrassment). All scores were internally consistent (alpha = 0.87 to 0.93) and reproducible (ICC = 0.87 to 0.91). The pattern of previously reported correlations with the Short-Form 36-item Health Survey and Psychological Well-Being Schedule were confirmed. Responsiveness statistics using changes in the independent measures of stress test pad weight, number of incontinent episodes, and patient global impression of improvement ranged from 0.4 to 0.8. Minimally important changes ranged from 2% to 5% in association with these measures and effect sizes. CONCLUSIONS: In a clinical trial, the I-QOL proved to be valid, reproducible, and responsive to treatment for UI in women.

Adolescent↗
PubMed2003

Reliability and validity of Quality of Life assessed by the Short-Form 36 and the Modular System for Quality of Life in patients with schizophrenia and patients with depression.

Reliability and validity of the Quality of Life (QoL) construct were investigated in healthy controls (N=346), patients with depression (N=114) and patients with schizophrenia (N=91) using two different QoL instruments: the Short-Form 36 (SF-36), a well-established generic instrument measuring eight dimensions; and the Modular System for Quality of Life (MSQoL), a recently developed instrument measuring seven core dimensions and four specific modules (objective data, partnership, family, occupation). The MSQoL and the SF-36 were administered at three intervals (hospital admission, discharge and 4-month follow-up). Reliability, group profiles (clinical specificity), responsiveness, discriminant validity (with regard to sociodemographic, psychopathological, clinical and state variables) and convergent validity were tested. At admission, patients with depression had the lowest QoL level, patients with schizophrenia had an intermediate level, and controls had the highest QoL level. At discharge and follow-up, the two patient groups did not differ from each other, but still had lower levels than controls. Both patient groups improved significantly in QoL from admission to discharge. This improvement was confounded by improvement in depressive symptoms, but not in positive or negative symptoms. Current mood state influenced QoL assessments in all three samples substantially. In conclusion, QoL can be measured reliably and with sufficient responsiveness by the MSQoL and the SF-36 in psychiatric and non-clinical populations, although discriminant validity with regard to depression and current mood is questionable.

Adult↗
PubMed1995

[The quality-of-life questionnaire with asthma patients: the Spanish version of the Asthma Quality of Life Questionnaire].

This paper describes the translation to Castilian and adaptation of a quality of life measurement instrument: the Asthma Quality of Life Questionnaire (AQLQ). The AQLQ, developed by Juniper et al, contains 32 items, 5 of which relate to habitual activities that the patient can choose from among a list of 26 possibilities. Answers are given on a scale of 7 points. To adapt this instrument for use in Spain, we subjected it to a process of translation/back translation by bilingual informants. The translated and original versions of each item, activity and answer option were evaluated as being totally equivalent (A), fairly equivalent but with some questionable wording (B), or of questionable equivalence (C). The naturalness and correctness of the Spanish version were also evaluated on a scale of 1 to 10. Three (9%) items and 1 (4%) activity were considered to be of questionable equivalence (C) and 12 (37%) items and 1 activity (4%) were considered to be of type B equivalence. The questionable aspects of types B and C equivalence were discussed in 2 meetings, along with expressions that were equivalent but unnatural or grammatically incorrect; the first meeting involved researchers and translators and the second was held with a group of 6 asthmatics. Consensus was finally obtained for each item and activity included in the second draft. That draft was then administered to another group of 7 patients in order to check comprehension and equivalence, after which a definitive version was produced by the researchers.(ABSTRACT TRUNCATED AT 250 WORDS)

Asthma↗
PubMed2001

European Resuscitation Council Guidelines 2000 for Advanced Paediatric Life Support. A statement from Paediatric Life Support Working Group and approved by the Executive Committee of the European Resuscitation Council.

The European Resuscitation Council (ERC) last issued guidelines for Paediatric Life Support (PLS) in 1998 [1]. These were based on the "Advisory Statements" of the International Liaison Committee on Resuscitation (ILCOR) published in 1997 [2]. Following this, the American Heart Association, together with representatives from ILCOR, undertook a series of evidence-based evaluations of the science of resuscitation which culminated in the publication of "Guidelines 2000 for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care" in August 2000 [3,4]. The Paediatric Life Support Working Party of the European Resuscitation Council has considered this document and the supporting scientific literature and has recommended changes to the ERC Advanced PLS guidelines. These are presented in this paper. There have been few major changes to the ERC recommended guidelines as some of the changes agreed in "Guidelines 2000" had already been introduced into Europe subsequent to the 1998 ILCOR "Advisory Statements" (Fig. 1).

Advanced Cardiac Life Support↗
PubMed1997

Paediatric life support. An advisory statement by the Paediatric Life Support Working Group of the International Liaison Committee on Resuscitation.

This document reflects the deliberations of ILCOR. The epidemiology and outcome of paediatric cardiopulmonary arrest and the priorities, techniques and sequence of paediatric resuscitation assessments and interventions differ from those of adults. The working group identified areas of conflict and controversy in current paediatric basic and advanced life support guidelines, outlined solutions considered and made recommendations by consensus. The working group was surprised by the degree of conformity already existing in current guidelines advocated by the American Heart Association (AHA), the Heart and Stroke Foundation of Canada (HSFC), the European Resuscitation Council (ERC), the Australian Resuscitation Council (ARC), and the Resuscitation Council of Southern Africa (RCSA). Differences are currently based upon local and regional preferences, training networks and customs, rather than scientific controversy. Unresolved issues with potential for future universal application are highlighted. This document does not include a complete list of guidelines for which there is no perceived controversy and the algorithm/decision tree figures presented attempt to follow a common flow of assessments and interventions, in coordination with their adult counterparts. Survival following paediatric prehospital cardiopulmonary arrest occurs in only approximately 3-17% and survivors are often neurologically devastated. Most paediatric resuscitation reports have been retrospective in design and plagued with inconsistent resuscitation definitions and patient inclusion criteria. Careful and thoughtful application of uniform guidelines for reporting outcomes of advanced life support interventions using large, randomized, multicenter and multinational clinical trials are clearly needed. Paediatric advisory statements from ILCOR will, by necessity, be vibrant and evolving guidelines fostered by national and international organizations intent on improving the outcome of resuscitation for infants and children worldwide.

Adolescent↗
PubMed2003

Quality of life assessment in the community-dwelling elderly: validation of the Assessment of Quality of Life (AQoL) Instrument and comparison with the SF-36.

Measurement of Health-Related Quality of Life (HRQoL) of the elderly requires instruments with demonstrated sensitivity, reliability, and validity, particularly with the increasing proportion of older people entering the health care system. This article reports the psychometric properties of the 12-item Assessment of Quality of Life (AQoL) instrument in chronically ill community-dwelling elderly people with an 18-month follow-up. Comparator instruments included the SF-36 and the OARS. Construct validity of the AQoL was strong when examined via factor analysis and convergent and divergent validity against other scales. Receiver Operator Characteristic (ROC) curve analyses and relative efficiency estimates indicated the AQoL is sensitive, responsive, and had the strongest predicative validity for nursing home entry. It was also sensitive to economic prediction over the follow-up. Given these robust psychometric properties and the brevity of the scale, AQoL appears to be a suitable instrument for epidemiologic studies where HRQoL and utility data are required from elderly populations.

Aged↗
PubMed1997

The development of the 'Quality-of-life for Respiratory Illness Questionnaire (QOL-RIQ)': a disease-specific quality-of-life questionnaire for patients with mild to moderate chronic non-specific lung disease.

Chronic non-specific lung disease (CNSLD) encompasses asthma as well as chronic obstructive pulmonary disease (COPD). Recently in health care, there has been increasing awareness in the functional, psychological and social aspects of the health of patients; their quality of life (QOL). Quality-of-life research addressing CNSLD patients has been rather underdeveloped for a long period of time. Recently, however, the importance of QOL is being increasingly recognized, and several research groups have started to study QOL in CNSLD patients in more detail. This paper describes the construction of a disease-specific QOL instrument for patients with mild to moderately severe CNSLD. Items relating to several domains of QOL were listed, and 171 CNSLD patients in general practice were asked how much of a problem each item had been (assessed on a seven-point Likert scale). After applying an item-selection procedure, a uni-dimensional QOL questionnaire was constructed consisting of 55 items divided into seven domain subscales: breathing problems, physical problems, emotions, situations triggering or enhancing breathing problems, general activities, daily and domestic activities, and social activities, relationships and sexuality. Reliability estimates of the domain subscales of the constructed questionnaire varied from 0.68 to 0.89, and was 0.92 for the QOL for Respiratory Illness Questionnaire (QOL-RIQ) total scale. A first impression of the construct validity of the questionnaire was gained by investigation of the relationship between the QOL domain subscales and several indicators of illness severity, as well as the relative contribution of illness severity variables, background characteristics and symptoms to QOL, using regression analysis. Further research to validate the questionnaire to a greater extent (construct validity, test-retest reliability and responsiveness to change) is currently taking place.

Adolescent↗
PubMed1999

Development of a disease specific quality of life (QoL) questionnaire module to supplement the EORTC core cancer QoL questionnaire, the QLQ-C30 in patients with pancreatic cancer. EORTC Study Group on Quality of Life.

There is overwhelming consensus that quality of life assessment is urgently required in pancreatic cancer, yet little research has been conducted. We report on the development of a disease specific questionnaire module to supplement the EORTC core cancer module, the QLQ-C30 in patients with pancreatic cancer, using EORTC quality of life study group guidelines for module development. Relevant QoL issues were generated from literature searches and interviews with health professionals and patients with pancreatic cancer. Issues were constructed into items and provisionally translated. The provisional module was pretested in patients in 8 European centres. The resulting module the QLQ-PAN26 includes 26 items related to disease symptoms, treatment side-effects and emotional issues specific to pancreatic cancer. This should ensure that the module will be sensitive to assess the small but important disease and treatment related QoL changes in pancreatic cancer. The use of the QLQ-C30 and QLQ-PAN26 will provide a comprehensive system of QoL assessment in international trials of pancreatic cancer.

Adult↗
PubMed1997

Life on Mars: a clue to life on Earth?

A martian meteorite has recently been claimed to show evidence of life and certainly shows the presence of organic matter. What might we learn about how life on Earth developed from studies of Mars?

Earth, Planet↗
PubMed2004

Validation of the Dermatology Life Quality Index as an outcome measure for urticaria-related quality of life.

BACKGROUND: Chronic idiopathic urticaria (CIU) is a debilitating skin disease that affects patients' quality of life (QOL). The Dermatology Life Quality Index (DLQI) assesses QOL parameters across several types of dermatologic conditions. However, an evaluation of the validity of the DLQI for use in CIU patients has not been undertaken, because CIU, unlike other chronic skin conditions, is subject to daily or weekly symptom fluctuations. OBJECTIVE: To test the reliability and validity of the DLQI in 2 samples of CIU patients treated with fexofenadine hydrochloride (20, 60, 120, or 240 mg twice daily). METHODS: Data were obtained from 2 similar multicenter, double-blind, randomized, placebo-controlled, parallel-group studies of CIU patients (n = 418 and n = 439). Patients completed the 10-item DLQI during 3 clinic visits (approximately 2 weeks apart). Clinic personnel also recorded patients' symptoms. RESULTS: The results of the DLQI items were similar to those obtained with other skin disease populations, indicating the presence of relatively symmetrical distributions. Reliability was high, demonstrating the lack of excessive random measurement error (alpha coefficient = .89 and .87 for samples 1 and 2). Factor analysis resulted in a unidimensional pattern, supporting the use of a total DLQI score. Most DLQI items distinguished patients with varying degrees of QOL impairment, highlighting the sensitivity of this instrument. Construct validity was moderate, providing evidence that the DLQI was responsive to changes in patients' clinical status. CONCLUSIONS: The DLQI is a valid, reliable, and clinically useful outcome measure for assessing QOL in CIU patients.

Chronic Disease↗
PubMed1998

Health-related quality of life in Australian children with asthma: lessons for the cross-cultural use of quality of life instruments.

The development of Australian forms of the Childhood Asthma Questionnaires (CAQs) is reported. Focus group methods and psychometric analyses were used to establish the conceptual, semantic and technical equivalence of these forms with the UK versions. Both versions also provide for data collection from non-asthmatic youngsters. The internal consistency was found to be acceptable (Cronbach's alpha 0.52-0.90) and the health-related quality of life (HRQoL) scores were found to vary with asthma severity (p < 0.05). Comparison with the UK data revealed that the non-asthmatic scores were higher for Australian than British children (p < 0.001) but that the scores for children with asthma did not differ between the two countries. It was only in the Australian sample that the group with asthma reported impaired HRQoL when compared to their healthy peers. These findings were interpreted in the context of cultural expectations of life quality and conclusions are presented regarding the importance of the gap between experience and expectations. The difficulties raised by the developmental and cultural issues inherent in paediatric HRQoL research were discussed.

Adaptation, Psychological↗
PubMed1999

The Assessment of Quality of Life (AQoL) instrument: a psychometric measure of health-related quality of life.

This paper describes constructing the Assessment of Quality of Life (AQoL) instrument; designed to measure health-related quality of life (HRQoL), and to be the descriptive system for a multi-attribute utility instrument. Unlike previous utility instruments' descriptive systems, the AQoL's has been developed using state-of-the-art psychometric procedures. The result is a descriptive system which emphasizes five different facets of HRQoL and which can claim to have construct validity. Based on the WHO's definition of health a model of HRQoL was developed. Items were written by focus groups of doctors and the researchers. These were administered to a construction sample, comprising hospital patients, and community members chosen at random. Final construction was through an iterative process of factor and reliability analyses. The AQoL measures 5 dimensions: illness, independent living, social relationships, physical senses and psychological wellbeing. Each has three items. Exploratory factor analysis showed the dimensions were orthogonal, and each was unidimensional. Internal consistency was alpha = 0.81. Structural equation modeling explored its internal structure; the comparative fit index was 0.90. These preliminary results indicate the AQoL has the prerequisite qualities for a psychometric HRQoL instrument for evaluation; replication with a larger sample is needed to verify these findings. Scaling it for economic evaluation using utilities is being undertaken. Respondents have indicated the AQoL is easy to understand and is quickly completed. Its initial properties suggest it may be widely applicable.

Adult↗
PubMed1999

Distinguishing between quality of life and health status in quality of life research: a meta-analysis.

Despite the increasing acceptance of quality of life (QOL) as a critical endpoint in medical research, there is little consensus regarding the definition of this construct or how it differs from perceived health status. The objective of this analysis was to understand how patients make determinations of QOL and whether QOL can be differentiated from health status. We conducted a meta-analysis of the relationships among two constructs (QOL and perceived health status) and three functioning domains (mental, physical, and social functioning) in 12 chronic disease studies. Instruments used in these studies included the RAND-36, MOS SF-20, EORTC QLQ-30, MILQ and MQOL-HIV. A single, synthesized correlation matrix combining the data from all 12 studies was estimated by generalized least squares. The synthesized matrix was then used to estimate structural equation models. The meta-analysis results indicate that, from the perspective of patients, QOL and health status are distinct constructs. When rating QOL, patients give greater emphasis to mental health than to physical functioning. This pattern is reversed for appraisals of health status, for which physical functioning is more important than mental health. Social functioning did not have a major impact on either construct. We conclude that quality of life and health status are distinct constructs, and that the two terms should not be used interchangeably. Many prominent health status instruments, including utility-based questionnaires and health perception indexes, may be inappropriate for measuring QOL. Evaluations of the effectiveness of medical treatment may differ depending on whether QOL or health status is the study outcome.

Health Status↗
PubMed2000

Randomised comparison of losartan vs. captopril on quality of life in elderly patients with symptomatic heart failure: the losartan heart failure ELITE quality of life substudy.

OBJECTIVE: To measure health-related quality-of-life (HRQoL) in elderly symptomatic heart failure patients following treatment with an angiotensin II receptor antagonist (losartan) vs. an angiotensin-converting-enzyme (ACE) inhibitor (captopril). METHODS: Patients (age > or = 65 years) were randomised to losartan, titrated to 50 mg once daily, or captopril, titrated to 50 mg three times daily, as tolerated. Sickness Impact Profile (SIP) and Minnesota Living with Heart Failure (LIhFE) questionnaires were administered at baseline, weeks 12 and 48. Composite hypothesis testing of change in HRQoL from baseline for completers, and withdrawal for unfavourable events (death, clinical/laboratory adverse experience) was used to account for differential dropout rates. RESULTS: In 203 patients completing the substudy (week 48), significant and comparable improvements in HRQoL from baseline were observed for both treatment groups (p < or = 0.001). Although there was a trend favouring losartan vs. captopril for the composite HRQoL endpoint (unadjusted p = 0.018, one-sided), this was not considered significant after adjusting for multiple testing. Significantly more captopril patients in the substudy subset withdrew for unfavourable reasons (19.6 vs. 10.9%, p = 0.038). CONCLUSIONS: Significant improvements in HRQoL were observed in elderly patients with symptomatic heart failure treated with losartan and captopril long-term. A trend favouring losartan in the composite measure of drug tolerability/quality of life was not significant, but losartan was generally better tolerated than captopril in that significantly fewer losartan patients discontinued therapy.

Aged↗
PubMed1998

Knowledge, self-management, compliance and quality of life in asthma: a cross-sectional study of the French version of the Asthma Quality of Life Questionnaire.

The Asthma Quality of Life Questionnaire (AQLQ) is a well-validated instrument. Our objectives were to explore the cross-sectional validity of the French version, using usual outcomes of asthma, as well as assessment of knowledge of asthma, self-management and compliance. A self-administered version of the AQLQ was given to 124 consecutive patients recruited from two out-patient clinics and an emergency room in order to reflect a wide range of asthma severity. The other outcomes of asthma measured were the FEV1, patient-perceived asthma severity using a visual analogue scale, compliance, knowledge of asthma condition and self-management autonomy. Correlations were predicted before analysis ( r > 0.5, strong correlation, ++ r = 0.35-0.5, moderate correlation and + r = 0.20-0.35, fair correlation). The AQLQ scores correlated moderately to strongly with asthma severity and fairly with the pulmonary function results. Of the behavioural outcomes assessed, only knowledge of asthma correlated fairly with the AQLQ scores, as expected. This study of the French version of the AQLQ, while showing similar cross-sectional correlations with functional assessment and asthma severity to those observed with the original English version, suggested in addition a positive association between quality of life and knowledge of asthma.

Adult↗
PubMed1999

The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer.

Family caregivers have become increasingly responsible for providing home care for cancer patients. Research has documented the distress of family caregivers; however, little has been done to evaluate the broader impact of caregiving on quality of life (QoL). The objectives of this study were to evaluate the reliability and validity of the Caregiver Quality of Life Index-Cancer (CQOLC), a new self-report instrument. Two hundred and sixty-three family caregivers of patients with lung, breast or prostate neoplasms participated. Test-retest reliability was 0.95 and internal consistency was 0.91. As expected, there were moderate correlations with overall mental health (r = 0.64), emotional distress (r = -0.50 to -0.52), burden (r = -0.65) and patient's performance status (r = -0.47) and low correlations with overall physical health (r = 0.13), social support (r = 0.22) and social desirability (r = 0.08). These results show that increased overall mental health is associated with better QoL, while more emotional distress and worsening patient performance status are associated with poorer QoL. Thus, the CQOLC appears to possess adequate validity, test-retest reliability and internal consistency. Future directions include further evaluation of sensitivity to change and factor analysis to determine the principal health-related QoL domains evaluated by the CQOLC.

Activities of Daily Living↗