HRQL

Distribution by Scientific Domains
Distribution within Medical Sciences

Kinds of HRQL

  • generic hrql

  • Terms modified by HRQL

  • hrql assessment
  • hrql measure
  • hrql questionnaire
  • hrql score

  • Selected Abstracts


    Patient-assessed health outcome measures for diabetes: a structured review

    DIABETIC MEDICINE, Issue 1 2002
    A. M. Garratt
    Abstract Aims To identify available disease-specific measures of health-related quality of life (HRQL) for diabetes and to review evidence for the reliability, validity and responsiveness of instruments. Methods Systematic searches were used to identify instruments. Instruments were assessed against predefined inclusion and exclusion criteria. Letters were sent to authors requesting details of further instrument evaluation. Information relating to instrument content, patients, reliability, validity and responsiveness to change was extracted from published papers. Results The search produced 252 references. Nine instruments met the inclusion criteria: Appraisal of Diabetes Scale (ADS), Audit of Diabetes-Dependent Quality of Life (ADDQoL), Diabetes Health Profile (DHP-1, DHP-18), Diabetes Impact Measurement Scales (DIMS), Diabetes Quality of Life Measure (DQOL), Diabetes-Specific Quality of Life Scale (DSQOLS), Questionnaire on Stress in Diabetic Patients-Revised (QSD-R), Diabetes-39 (D-39) and Well-being Enquiry for Diabetics (WED). The shortest instrument (ADS) has seven items and the longest (WED) has 50 items. The ADS and ADDQoL are single-index measures. The seven multidimensional instruments have dimensions covering psychological well-being and social functioning but vary in the remainder of their content. The DHP-1 and DSQOLS are specific to Type 1 diabetes patients. The DHP-18 is specific to Type 2 diabetes patients. The DIMS and DQOL have weaker evidence for reliability and internal construct validity. Patients contributed to the content of the ADDQoL, DHP-1/18, DQOL, DSQOLS, D-39, QSD-R and WED. The authors of the ADDQoL, DHP-1/18, DQOL, DSQOLS gave explicit consideration to content validity. The construct validity of instruments was assessed through comparisons with instruments measuring related constructs and clinical and sociodemographic variables. None of the instruments has been formally assessed for responsiveness to changes in health. Conclusions Five of the diabetes-specific instruments have good evidence for reliability and internal and external construct validity: the ADDQoL, DHP-1/18, DSQOLS, D-39 and QSD-R. Instrument content should be assessed for relevance before application. The instruments should be evaluated concurrently for validity and responsiveness to important changes in health. [source]


    A Comparison of Clinically Important Differences in Health-Related Quality of Life for Patients with Chronic Lung Disease, Asthma, or Heart Disease

    HEALTH SERVICES RESEARCH, Issue 2 2005
    Kathleen W. Wyrwich
    Objective. On the eight scales of the Medical Outcomes Study Short-Form 36-Item Health Survey (SF-36), Version 2, we compared the clinically important difference (CID) thresholds for change over time developed by three separate expert panels of physicians with experience in quality of life assessment among patients with chronic obstructive pulmonary disease (COPD), asthma, and heart disease. Study Design. We used a modified Delphi technique combined with a face-to-face panel meeting within each disease to organize and conduct the consensus process among the expert panelists, who were familiar with the assessment and evaluations of health-related quality of life (HRQL) measures among patients with the panel-specific disease. Principal Findings. Each of the expert panels first determined the magnitude of the smallest numerically possible change on each SF-36 scale, referred to as a state change, and then built their CIDs from this metric. All three panels attained consensus on the scale changes that constituted small, moderate, and large clinically important SF-36 change scores. The CIDs established by the heart disease panel were generally greater than the CIDs agreed on by the asthma and COPD panels. Conclusions. These panel-derived thresholds reflect possible differences in disease management among the represented panel-specific diseases, and are all greater than the minimal CID thresholds previously developed for the SF-36 scales among patients with arthritis. If confirmed among patients with the relevant diseases and those patients' physicians, these disease-specific CIDs could assist both researchers and practicing clinicians in the use and interpretation of HRQL changes over time. [source]


    The effects of HCV infection and management on health-related quality of life,

    HEPATOLOGY, Issue 3 2007
    Zobair Younossi
    Infection with HCV leads to an array of symptoms that compromise health-related quality of life (HRQL). Chronic hepatitis C is treated primarily with pegylated interferon (peg-IFN) and an inosine 5, monophosphate dehydrogenase inhibitor, ribavirin (RBV), with the goal of achieving a sustained virologic response (SVR). SVR reduces the rate of hepatic fibrosis and other disease-related complications and, in turn, increases HRQL. Although combination therapy with peg-IFN and RBV produces SVRs in more than 50% of treated patients, it is associated with side effects that can reduce short-term HRQL, can lead to dose reductions and discontinuations, and may impair treatment response. Fatigue and depression are common symptoms of chronic HCV infection that may also be caused by IFN-based therapy. Hemolytic anemia and IFN-mediated bone marrow suppression are well-known consequences of IFN/RBV therapy, often resulting in dose reductions or discontinuations, and have the potential to affect SVR rates. Management of these symptoms is vital to successful outcomes and generally relies on therapy that is adjunctive to the primary treatment of the viral infection itself. Several new drugs with the potential to increase SVR rates without compromising HRQL are in development. Conclusion: The relationship of chronic HCV infection, treatment, and HRQL is complex. Successful treatment of chronic hepatitis C requires an understanding of the intricacies of this relationship and appropriate management of treatment-related symptoms. (HEPATOLOGY 2007;45:806,816.) [source]


    Relationship of health-related quality of life to treatment adherence and sustained response in chronic hepatitis C patients

    HEPATOLOGY, Issue 3 2002
    David Bernstein
    Interferon therapy may exacerbate health-related quality of life (HRQL) deficits associated with hepatitis C virus (HCV) early in the course of therapy. Treatment with polyethylene glycol,modified interferon (peginterferon) alfa-2a (40 kd) provides improved sustained response over interferon alfa-2a, but its effect on HRQL is unknown. The objective of this study was to (1) evaluate the effect of sustained virologic response on HRQL in patients with HCV and (2) determine whether impairment of HRQL during treatment contributes to early treatment discontinuation. Data consisted of a pooled secondary analysis of patients (n = 1,441) across 3 international, multicenter, open-label, randomized studies that compared peginterferon alfa-2a (40 kd) with interferon alfa-2a. ANCOVA was used to examine the effect of sustained virologic response on HRQL. Repeated-measures mixed-models ANCOVA was used to compare Fatigue Severity Scale (FSS) and SF-36 scores during treatment by treatment group. Logistic regression analysis was used to examine the association between changes at baseline in on-treatment HRQL and early treatment discontinuation. Sustained virologic response was associated with marked improvements from baseline to end of follow-up in all subjects, including patients with cirrhosis. During treatment, patients receiving peginterferon alfa-2a (40 kd) had statistically significantly better scores on both the SF-36 and FSS. Baseline to 24-week changes in fatigue and SF-36 mental and physical summary scores significantly predicted treatment discontinuation. In conclusion, sustained virologic response is associated with improvements in quality of life in patients with or without advanced liver disease. This parameter may be an important consideration in maximizing treatment adherence. [source]


    Relative association of treatment-emergent adverse events with quality of life of patients with schizophrenia: post hoc analysis from a 3-year observational study

    HUMAN PSYCHOPHARMACOLOGY: CLINICAL AND EXPERIMENTAL, Issue 6 2010
    Cecilia Adrianzén
    Abstract Objective To explore the relative association of adverse events with health-related quality of life (HRQL) in patients (N,=,16,091) with schizophrenia, treated with antipsychotic medication. Methods In this post hoc analysis of data from two 3-year observational studies, a mixed effects model with repeated measures was used to evaluate the association between HRQL (EuroQoL visual analogue scale (EQ-VAS)) and pre-specified covariates including: severity of illness, extrapyramidal symptoms, tardive dyskinesia, sexual dysfunction, and clinically significant weight gain (>,7% increase from baseline after ,,3 months of treatment). Results Mean EQ-VAS increased from 47.8,±,21.7 at baseline to 72.4,±,18.4 after 36 months. The rank order of the negative association of adverse events with HRQL was: sexual dysfunction (effect estimate ,4.04; 95% CI ,4.30 to ,3.79), extrapyramidal symptoms (effect estimate ,2.09; 95% CI ,2.43 to ,1.75), and tardive dyskinesia (effect estimate ,0.89; 95% CI ,1.46 to ,0.32). Conclusions Differences were observed in the direction and magnitude of the association between each adverse event and HRQL. Recognition of the relative association of adverse events with HRQL may contribute to improved adherence of patients with schizophrenia to antipsychotic therapy. Copyright © 2010 John Wiley & Sons, Ltd. [source]


    Effects of solifenacin on overactive bladder symptoms, symptom bother and other patient-reported outcomes: results from VIBRANT , a double-blind, placebo-controlled trial

    INTERNATIONAL JOURNAL OF CLINICAL PRACTICE, Issue 12 2009
    M. D. Vardy
    Summary Aim:, The aim of this study was to evaluate the efficacy of solifenacin on symptom bother using the Overactive Bladder Questionnaire (OAB-q). Methods:, In VIBRANT, a double-blind, US-based trial, patients with OAB for , 3 months received flexibly dosed solifenacin or placebo for 12 weeks. At baseline and 4-week intervals, patients completed the OAB-q [symptom bother and health-related quality of life (HRQL) scales] and 3-day bladder diaries; other patient-reported outcome measures were also assessed at baseline and week 12. The primary efficacy end-point was the change from baseline to end of treatment (EOT) on the OAB-q Symptom Bother scale. Adverse events (AEs) were monitored. Results:, At EOT, solifenacin (n = 377) vs. placebo (n = 374) significantly improved mean symptom bother (,29.9 vs. ,20.4, p < 0.0001), HRQL total (25.3 vs. 16.7, p < 0.0001) and all HRQL domain scores (Ps < 0.0001). Solifenacin vs. placebo significantly improved daily episodes of urgency, incontinence and frequency but not nocturia. Significant separation from placebo was evident as early as week 4. Overall, significantly more solifenacin vs. placebo patients reported treatment benefit (84% vs. 63%), satisfaction (80% vs. 59%) and willingness to continue (79% vs. 60%; Ps< 0.0001). Treatment-related AEs in solifenacin vs. placebo patients were dry mouth (13% vs. 2%), constipation (8% vs. 2%) and dry eye (2% vs. 0.3%). Conclusions:, As early as week 4 and through EOT, flexibly dosed solifenacin significantly improved OAB symptom bother and HRQL as well as the symptoms of urgency, frequency and incontinence compared with placebo. Significantly more solifenacin patients reported treatment benefit and satisfaction at week 12 compared with placebo. [source]


    Impact of COPD severity on physical disability and daily living activities: EDIP-EPOC I and EDIP-EPOC II studies

    INTERNATIONAL JOURNAL OF CLINICAL PRACTICE, Issue 5 2009
    J. M. Rodriguez Gonzalez-Moro
    Summary Aims:, The severity of chronic obstructive pulmonary disease (COPD) is associated to patients' health-related quality of life (HRQL). Physical impairment increasingly affects daily activities creating economic, social and personal burden for patients and their families. This burden should be considered in the management of COPD patients; therefore, we intended to assess the impact of the disease severity on physical disability and daily activities. Methods:, Two epidemiological observational cross-sectional descriptive studies were carried out in 1596 patients with moderate COPD and 2012 patients with severe or very severe COPD in the routine clinical practice. Demographic and basic clinical-epidemiological data were collected and patients completed questionnaires to assess their physical disability because of COPD [Medical Research Council (MRC)], COPD repercussion on daily activities [London Chest Activity of Daily Living (LCADL)], job, economy and family habits and their health status [EQ-5D visual analogue scale (VAS)]. Results:, In all, 37% of severe/very severe COPD patients and 10% of moderate (p < 0.0001) had MRC grades 4 and 5. Mean global LCADL was significantly higher in severe/very severe than in moderate patients [29.6 (CI 95%: 28.91,30.25) vs. 21.4 (CI 95%: 20.8,21.9); p < 0.0001]. COPD job impact and economic and family habits repercussions were significantly higher and health status significantly worse in severe/very severe cases than in patients with moderate COPD. Conclusions:, COPD severity is highly associated with physical disability by MRC grading, with functionality on daily activities and with impairment of other social and clinical activities. Moderate COPD patients show already a significant degree of impairment in all these parameters. [source]


    Effects of flexible-dose fesoterodine on overactive bladder symptoms and treatment satisfaction: an open-label study

    INTERNATIONAL JOURNAL OF CLINICAL PRACTICE, Issue 4 2009
    J.-J. Wyndaele
    Summary Aims:, To evaluate the efficacy and tolerability of flexible-dose fesoterodine in subjects with overactive bladder (OAB) who were dissatisfied with previous tolterodine treatment. Methods:, This was a 12-week, open-label, flexible-dose study of adults with OAB (, 8 micturitions and , 3 urgency episodes per 24 h) who had been treated with tolterodine (immediate- or extended-release) for OAB within 2 years of screening and reported dissatisfaction with tolterodine treatment. Subjects received fesoterodine 4 mg once daily for 4 weeks; thereafter, daily dosage was maintained at 4 mg or increased to 8 mg based on the subject's and physician's subjective assessment of efficacy and tolerability. Subjects completed 5-day diaries, the Patient Perception of Bladder Condition (PPBC) and the Overactive Bladder Questionnaire (OAB-q) at baseline and week 12 and rated treatment satisfaction at week 12 using the Treatment Satisfaction Question (TSQ). Safety and tolerability were assessed. Results:, Among 516 subjects treated, approximately 50% opted for dose escalation to 8 mg at week 4. Significant improvements from baseline to week 12 were observed in micturitions, urgency urinary incontinence episodes, micturition-related urgency episodes and severe micturition-related urgency episodes per 24 h (all p < 0.0001). Approximately 80% of subjects who responded to the TSQ at week 12 reported satisfaction with treatment; 38% reported being very satisfied. Using the PPBC, 83% of subjects reported improvement at week 12 with 59% reporting improvement , 2 points. Significant improvements from baseline (p < 0.0001) exceeding the minimally important difference (10 points) were observed in OAB-q Symptom Bother and Health-Related Quality of Life (HRQL) scales and all four HRQL domains. Dry mouth (23%) and constipation (5%) were the most common adverse events; no safety issues were identified. Conclusion:, Flexible-dose fesoterodine significantly improved OAB symptoms, HRQL, and rates of treatment satisfaction and was well tolerated in subjects with OAB who were dissatisfied with prior tolterodine therapy. [source]


    What do we know about quality of life in dementia?

    INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 1 2009
    A review of the emerging evidence on the predictive, explanatory value of disease specific measures of health related quality of life in people with dementia
    Abstract Objective Given its complexity, there is growing consensus on the need to measure patient-rated broad outcomes like health-related quality of life (HRQL) as well as discrete functions like cognition and behaviour in dementia. This review brings together current data on the distribution, determinants and course of HRQL in dementia to investigate the predictive and explanatory value of measures of HRQL in people with dementia. Design A systematic review of papers in English published up to October 2007 to identify data on the use of disease-specific measures of HRQL in dementia. Results There are no clear or consistent associations between socio-demographic variables and HRQL. There is no convincing evidence that lower cognition or greater activity limitation is associated with lower HRQL. There is a strong suggestion that depression is consistently associated with decreased HRQL in dementia. However, the magnitude of the associations observed is moderate only and the proportion of variance explained is low suggesting that depression and HRQL are different constructs. We currently know almost nothing about the natural history of HRQL in dementia or what attributes or interventions promote or inhibit HRQL life for people with dementia. Conclusions While in other illnesses there may be simple association between HRQL and an easily measurable clinical variable, in dementia this is not so. There are now instruments available with which to measure disease-specific HRQL directly in clinical trials and other studies that can yield informative data. Copyright © 2008 John Wiley & Sons, Ltd. [source]


    Systematic pelvic floor training for lower urinary tract symptoms post-prostatectomy: a randomized clinical trial

    INTERNATIONAL JOURNAL OF UROLOGICAL NURSING, Issue 1 2008
    Joanne P. Robinson
    Abstract Because the majority of prostate cancers are diagnosed in the local or regional stages, radical prostatectomy is a treatment of choice for many patients, particularly men younger than 65 years of age. However, radical prostatectomy carries a significant risk of lower urinary tract symptoms (LUTS) and may also impair quality of life. The aim of the study was to examine the effects of systematic postoperative pelvic floor training (PFT) on LUTS intensity, LUTS distress and health-related quality of life (HRQL) at 3, 6 and 12 months following radical prostatectomy. This randomized clinical trial was guided by the Theory of Unpleasant Symptoms. All participants (n = 126) received brief instructions for exercising pelvic floor muscles before surgery and the offer of a biofeedback evaluation session 1 month following catheter removal. The intervention group (n = 62) received an additional 4 weeks of PFT immediately following catheter removal. Intervention and control groups both reported steady declines in the intensity and distress associated with LUTS, but no between-group differences were found. Similarly, no between-group differences were found in impact on HRQL; however, the pattern of HRQL impact differed by group (p < 0·01) in the direction of greater impairment over time for the control group. LUTS intensity, LUTS distress and negative effects on HRQL decline for many radical prostatectomy patients over the first postoperative year; however, improvement does not occur in all patients. Further research is needed to improve our understanding of factors that influence development, resolution and management of LUTS following radical prostatectomy. [source]


    Agreement Between Patient and Proxy Responses of Health-Related Quality of Life After Hip Fracture

    JOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 7 2005
    C. Allyson Jones PT
    Objectives: To examine agreement between patient and proxy respondents on health-related quality of life (HRQL) over time during the 6-month recovery after hip fracture. Design: Prospective longitudinal cohort study. Setting: A healthcare region serving Edmonton, Alberta, and the surrounding area. Participants: Two hundred forty-five patients aged 65 and older, were treated for hip fracture, and had Mini-Mental State Examination scores greater than 17; 245 family caregivers participated as proxy respondents. Measurements: Primary outcome was HRQL (Health Utilities Mark 2 and Mark 3). Interviews were completed within 5 days after surgery and at 1, 3, and 6 months. Agreement was evaluated using intraclass correlation coefficients (ICCs). Results: Agreement was considered moderate to excellent for HRQL. ICC values ranged from 0.50 to 0.85 (P<.001) for physically based observable dimensions of health status and from 0.32 to 0.66 (P<.01) for less-observable dimensions. Agreement improved with time. Time and the number of days between patient and proxy interviews were significant factors in accounting for patient,proxy differences. Conclusion: Although proxy and patient responses are not interchangeable, proxy responses provide an option for assessing function and health status in patients who are unable to respond on their own behalf. [source]


    A Group-Mediated Cognitive-Behavioral intervention for Increasing Adherence to Physical Activity in Older Adults,

    JOURNAL OF APPLIED BIOBEHAVIORAL RESEARCH, Issue 1 2000
    Lawrence R. Brawley
    This study examined the efficacy of a group-mediated cognitive behavioral intervention (GMCB) on adherence rates to physically active lifestyles in older adults. Sixty older adults were randomized to I of 3 groups: waiting list control (WLC), a standard physical activity program (SPA), or GMCB. The SPA and GMCB involved 6 months of combined center- and home-based activity. Contact with participants was then terminated with a follow-up assessment at 9 months. Results revealed that, at the 9-month follow-up the GMCB group had a higher frequency of weekly physical activity than the SPA group. At 6 months, both groups were more active, had higher aerobic power, and improved HRQL when compared with the control group. [source]


    A psychometric evaluation of the Chinese version of the Cardiovascular Limitations and Symptoms Profile in patients with coronary heart disease

    JOURNAL OF CLINICAL NURSING, Issue 17 2008
    Violeta Lopez
    Aims and objectives., The aim of this study was to translate from English and evaluate the validity, reliability and cultural relevance of the Cardiovascular Limitations and Symptoms Profile (CLASP) as a health-related quality-of-life (HRQL) measure in Chinese patients with coronary heart disease. Background., Improvement in HRQL is increasingly used as a primary outcome in determining the treatment benefit using a generic instrument. However, disease-specific instruments are being cited as more responsive and sensitive in detecting even the smallest changes in health status. Therefore, valid and reliable disease-specific measures for patients with coronary heart disease are now being developed and evaluated. Design., Questionnaire design. Methods., The translation equivalence and content validity of the Chinese version of CLASP were evaluated by an expert panel. Measurement performance was tested on a convenience sample of 369 Chinese coronary heart disease patients. Results., The instrument demonstrated good content validity (content validity index 0·94), acceptable internal consistency (>0·70), except for two subscales of angina and tiredness and significant positive correlations among the subscales of CLASP, Hospital Anxiety Depression Scale and the Short Form 36 Health Survey. Principal components analysis revealed nine factors that together explained 69% of the variance. Conclusions., The results of this study support that CLASP is a valid and reliable disease-specific health status measure for Chinese patients with coronary heart disease. However, further item modifications and testings are needed when considering the cross-cultural context. Relevance to clinical practice., The use of disease-specific HRQL measures could effectively evaluate nursing interventions in clinical practice. Further validations of CLASP among different diagnostic groups, such as patients with heart failure and those who have survived an acute myocardial infarction, would provide further empirical support for its use with all patients with heart disorders. [source]


    The epidemiologic, health-related quality of life, and economic burden of gastrointestinal stromal tumours

    JOURNAL OF CLINICAL PHARMACY & THERAPEUTICS, Issue 6 2007
    P. Reddy PharmD
    Summary Background and objectives:, Gastrointestinal stromal tumours (GIST) are uncommon tumours believed to arise from interstitial cells of Cajal or their precursors in the gastrointestinal (GI) tract, accounting for a small percentage of GI neoplasms and sarcomas. Given the recent recognition of GIST as a distinct cancer, as well as new treatment options available today, a review of the epidemiologic, health-related quality of life (HRQL), and economic burden of GIST is timely from a payer, provider and patient perspective and may provide guidance for treatment decision making and reimbursement. Methods:, A systematic literature review of PubMed and five scientific meeting databases, was conducted to identify published studies and abstracts describing the epidemiologic, HRQL and economic impact of GIST. Publications deemed worthy of further review, based on the information available in the abstract, were retrieved in full text. Results and discussion:, Thirty-four publications met the review criteria: 29 provided data on GIST epidemiology, one provided cost data, three reported HRQL outcomes, and one reported cost and HRQL outcomes. The annual incidence of GIST (cases per million) ranged from 6·8 in the USA to 14·5 in Sweden, with an estimated 5-year survival rate of 45,64%. On the Functional Illness of Chronic Therapy-fatigue instrument, GIST patients scored 40·0 compared with 37·6 in anaemic cancer patients (0 = worst; 52 = least fatigue). Total costs over 10 years for managing GIST patients with molecularly targeted treatment was estimated at £47 521,£56 146 per patient compared with £4047,£4230 per patient with best supportive care. Conclusions:, The incidence of GIST appears to be similar by country; the lower estimate in one country could be explained by differences in method of case ascertainment. Data suggest that the HRQL burden of GIST is similar to that with other cancers although this requires further exploration. The value of new therapies in GIST needs to consider not only cost but also anticipated benefits and the unmet medical need in this condition. [source]


    Psychometric properties of the MacNew heart disease health-related quality of life instrument in patients with heart failure

    JOURNAL OF EVALUATION IN CLINICAL PRACTICE, Issue 4 2008
    Stefan Höfer
    Abstract Rationale, aims and objectives, Heart failure (HF) is a severe chronic disease and impairs health-related quality of life (HRQL). While validated specific HRQL instruments are required for evaluation of treatment and rehabilitation in patients with HF, a single validated measure to document changes in HRQL for patients with different heart disease diagnoses would be invaluable. The purpose of this analysis was the psychometric analysis of the German MacNew Heart Disease Questionnaire (MacNew) in HF patients, which has previously been shown to be reliable and valid in patients with myocardial infarction, angina pectoris and arrhythmia. Methods, We recruited 89 patients (61.7 ± 11.5 years; 84.3% male) in two Austrian and one Swiss cardiology department with documented HF (effect sizes 28.9 ± 10.1%). The self-administered MacNew, the Short Form-36 (SF-36) and the Hospital Anxiety and Depression Scale were completed. Internal consistency reliability (Cronbach's ,), discriminative and evaluative validity were assessed. Results, Cronbach's , exceeded 0.80. Each MacNew scale differentiated between patients with and without anxiety (3.9 ± 1.0 vs. 5.3 ± 0.8, all P < 0.001), with and without depression (4.2 ± 1.2 vs. 5.2 ± 0.9 all P < 0.03) and by the SF-36 health transition item (deteriorate = 4.39, no change = 4.95, improve = 5.45, all P < 0.02). Evaluative validity was demonstrated with effect sizes >0.70 for a subsample attending a 12-week outpatient rehabilitation programme. Conclusions, The German language version of the MacNew demonstrates consistently acceptable psychometric properties of reliability, validity and responsiveness in patients with documented HF. Together with previous documentation of reliability, validity and responsive, these findings strengthen the argument for the MacNew as a potential ,core' HRQL measure, at least in the German language. [source]


    Validation of the Chinese version of the MacNew Heart Disease Health-related Quality of Life questionnaire

    JOURNAL OF EVALUATION IN CLINICAL PRACTICE, Issue 2 2008
    Doris S. F. Yu RN PhD
    Abstract Rationale, Patient-reported outcomes such as health-related quality of life (HRQL) describe or characterize what patients have experienced as a result of their health care. However, treatment outcome comparisons among different pure or mixed populations of patients with myocardial infarction, angina or heart failure cannot be made using existing coronary heart disease (CHD)-specific HRQL instruments. Aims and objectives, The aim of this study was to evaluate the psychometric properties of the Chinese version of the MacNew in a cohort of Hong Kong patients diagnosed with CHD. Methods, Chinese translations of a CHD-specific HRQL instrument, the MacNew Heart Disease HRQL questionnaire (MacNew), the Short-form 36 Health Survey and the Hospital Anxiety and Depression Scale were administered to 365 Chinese-speaking patients with CHD at baseline and again 3 months later (n = 363). The Medical Outcomes Trust Scientific Advisory Committee criteria were used to examine the psychometric properties of the Chinese MacNew Heart Disease HRQL questionnaire. Results, The results warrant recommending the use of the MacNew as an outcome measure to enhance treatment evaluation in Chinese patients with CHD and a diagnosis of myocardial infarction, angina or heart failure, substantiating previous psychometric data on the MacNew in a number of different studies in patients speaking seven different languages. Conclusion, The MacNew questionnaire may have value as a core CHD questionnaire for treatment outcome comparisons among pure or mixed populations of patients with myocardial infarction, angina or heart failure. [source]


    Treatment of paediatric atopic dermatitis with pimecrolimus (Elidel®, SDZ ASM 981): impact on quality of life and health-related quality of life

    JOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY & VENEREOLOGY, Issue 3 2006
    SP McKenna
    Abstract Aim, To report on quality of life (QoL) and health-related quality of life (HRQL) impacts of pimecrolimus (Elidel®, Novartis A.G., Basel, Switzerland, SDZ ASM 981) 1% cream in the long-term treatment of paediatric atopic dermatitis. Methods, QoL and HRQL data are presented from two 12-month international clinical trials evaluating the efficacy and safety of pimecrolimus 1% cream. Both trials were randomized and double blinded and compared two treatment strategies, one involving the use of emollients, pimecrolimus and topical corticosteroids, the other is ,usual care' (emollients plus topical corticosteroids) with a vehicle cream to maintain study blinding. The first trial (the infant trial) involved patients between ages 3 months and 2 years, whereas the children trial included patients aged 2,17 years. In both trials, QoL of the affected child's parent was evaluated with the parent's index of quality of life in atopic dermatitis (PIQoL-AD). HRQL was assessed in the children trial only with the children's dermatology life quality index (CDLQI). QoL and HRQL assessments were conducted at baseline, 6 weeks, 6 months and 12 months. Results, Generalized linear modelling of PIQoL-AD scores at each post-baseline visit showed a greater impact on parent's QoL for pimecrolimus compared with control at all time-points in both trials. HRQL scores showed a greater improvement from baseline for children in the pimecrolimus group compared with those in the control group at all time-points. Conclusions,, The results show a beneficial impact of pimecrolimus on parents' QoL in paediatric atopic dermatitis, confirming findings from earlier shorter term trials. There was also a clear benefit to the HRQL of the children treated. [source]


    Predictors of health-related quality of life in patients with chronic liver disease

    ALIMENTARY PHARMACOLOGY & THERAPEUTICS, Issue 5 2009
    A. AFENDY
    Summary Background, Patient-reported outcomes like health-related quality of life (HRQL) have become increasingly important for full assessment of patients with chronic liver diseases (CLD). Aim, To explore the relative impact of different types of liver disease on HRQL as well as predictors of HRQL domains in CLD. Methods, Our HRQL databases with Short-Form 36 (SF-36) data were used. Scores for each of SF-36 scales (PF , physical functioning, RP , role functioning, BP , bodily pain, GH , general health, VT , vitality, SF , social functioning, RE , role emotional and MH , mental health, MCS , mental component score, PCS , physical component score) were compared between different types of CLD as well as other variables. Results, Complete data were available for 1103 CLD patients. Demographic and clinical data included: age 54.2 ± 12.0 years, 40% female, 761 (69%) with cirrhosis. Analysis revealed that age correlated significantly (P < 0.05) with worsening HRQL on every scale of the SF-36. Female patients had more HRQL impairments in PF, RP, BP, GH, VT and MH scales of SF-36 (, scale score: 6.6,10.7, P < 0.05). Furthermore, cirrhotic patients had more impairment of HRQL in every scale of SF-36 (, scale score: 6.6,43.0, P < 0.05). In terms of diagnostic groups, non-alcoholic fatty liver disease patients showed more impairment of HRQL. Conclusions, Analysis of this large CLD cohort suggests that a number of important clinicodemographic factors are associated with HRQL impairment. These findings contribute to the full understanding of the total impact of CLD on patients' health. [source]


    Health-related quality of life in patients with gastro-oesophageal reflux disease under routine care: 5-year follow-up results of the ProGERD study

    ALIMENTARY PHARMACOLOGY & THERAPEUTICS, Issue 6 2009
    M. NOCON
    Summary Background, Gastro-oesophageal reflux disease (GERD) is a common disorder associated with substantial reductions in health-related quality of life (HRQL). Aim, To describe patterns of change in HRQL during 5 years of follow-up in a large population of GERD patients. Methods, In 2000, a total of 6215 GERD patients were enrolled in the Progression of GERD (ProGERD) study. During follow-up, patients received any medication considered necessary. HRQL was assessed yearly with the Short-Form 36 and the Quality of Life in Reflux and Dyspepsia (QOLRAD) questionnaires. Associations between patient characteristics and changes in HRQL were analysed using multiple logistic regression models. Results, After 5 years, data on HRQL were available for 4597 (74%) patients. Both generic and disease-specific HRQL improved after baseline and remained well above baseline levels in the following years. A clinically relevant decrease in QOLRAD scores was reported by 3,5% of patients. According to our multivariate analysis, a decrease in HRQL was associated with a higher reflux symptom load and the presence of night-time heartburn. Conclusions, Only a small minority of the ProGERD population reported a clinically relevant decrease in HRQL, which was associated most strongly with nocturnal heartburn. [source]


    Comparing the safety, tolerability and quality of life in patients with chronic hepatitis B vs chronic hepatitis C treated with peginterferon alpha-2a

    LIVER INTERNATIONAL, Issue 4 2008
    Patrick Marcellin
    Abstract Background/Aims: Hepatitis B and C viruses (HBV and HCV) are two clinically distinct but related diseases. Pooled data from five studies of peginterferon alpha-2a in patients with chronic HCV infection (CHC) were compared with two studies of the drug in patients with chronic HBV infection (CHB). Method: The HBV studies included both hepatitis B e antigen (HBeAg)-positive (n=271) and HBeAg-negative (n=177) patients; 791 patients took part in the HCV trials. In all studies, patients were treated with 180 ,g peginterferon alpha-2a monotherapy once weekly for 48 weeks. The number of adverse events (AEs), discontinuations and dose modifications were documented. Health-related quality of life (HRQL) was assessed using the Short-Form 36 questionnaire. Safety was assessed throughout the treatment period. A 24-week treatment-free follow-up period was also included. Results: Differences (HBV vs HCV) were observed in the incidence of AEs (88,89 vs 96,100%), serious AEs (4,5 vs 7,16%) and treatment withdrawals (6,8 vs 17,33%). The frequency of depression-related events was lower in CHB patients (4 vs 22%, P<0.001), as was the impact of treatment on HRQL. Conclusions: The safety and tolerability of peginterferon alpha-2a in patients with CHB compares favourably with that observed in CHC patients, with a lower incidence of common interferon-related AEs and a significantly lower incidence of depression. [source]


    Health-related quality of life of food allergic patients measured with generic and disease-specific questionnaires

    ALLERGY, Issue 8 2010
    B. M. J. Flokstra-de Blok
    To cite this article: Flokstra-de Blok BMJ, van der Velde JL, Vlieg-Boerstra BJ, Oude Elberink JNG, DunnGalvin A, Hourihane JO'B, Duiverman EJ, Dubois AEJ. Health-related quality of life of food allergic patients measured with generic and disease-specific questionnaires. Allergy 2010; 65: 1031,1038. Abstract Background:, Health-related quality of life (HRQL) has never been measured with both generic and disease-specific questionnaires in the same group of food allergic patients. The aim of this study was to compare HRQL of food allergic patients as measured with generic and disease-specific questionnaires. Methods:, Generic questionnaires (CHQ-CF87 and RAND-36) and disease-specific HRQL questionnaires (FAQLQ-CF, -TF and -AF) were completed by 79 children, 74 adolescents and 72 adults with food allergy. Floor and ceiling effects, percentage of agreement and multivariate stepwise regression analysis were used to compare the generic and disease-specific measurements. Results:, The Food Allergy Quality of Life Questionnaires (FAQLQs) showed minimal floor or ceiling effects. The CHQ-CF87 and RAND-36 showed minimal floor effects, but remarkable ceiling effects (>73%) were found for the scales role functioning-emotional (RE), role functioning-behaviour (RB), role functioning-physical (RP) in children and adolescents and the scale RE (>79%) in adults. Additionally, we found low percentages of agreement between the generic and disease-specific questionnaires to identify the same food allergic patients with the best or worst HRQL. Only patients with the best disease-specific HRQL also tended to have the best generic HRQL. Finally, the explained variance in HRQL by patient characteristics was higher in the disease-specific questionnaires (30.7,62.8%) than in the generic scales (6.7,31.7%). Conclusion:, Disease-specific HRQL questionnaires may be more suitable to measure clinically important impairments in HRQL or HRQL differences over time in food allergic patients. However, generic HRQL questionnaires are indispensable for the comparison between different diseases and are thus complementary. [source]


    Health-related quality of life of food allergic patients: comparison with the general population and other diseases

    ALLERGY, Issue 2 2010
    B. M. J. Flokstra-de Blok
    To cite this article: Flokstra-de Blok BMJ, Dubois AEJ, Vlieg-Boerstra BJ, Oude Elberink JNG, Raat H, DunnGalvin A, Hourihane JO'B, Duiverman EJ. Health-related quality of life of food allergic patients: comparison with the general population and other diseases. Allergy 2010; 65: 238,244. Abstract Background:, To date no studies have compared generic health-related quality of life (HRQL) of food allergic patients from childhood to adulthood with that of the general population or patients with other chronic diseases. The aim of this study was to compare generic HRQL of food allergic patients with the general population and other diseases. Methods:, Generic HRQL questionnaires (CHQ-CF87 and RAND-36) were completed by 79 children, 74 adolescents and 72 adults with food allergy. The generic HRQL scores were compared with scores from published studies on the general population and patients with asthma, irritable bowel syndrome (IBS), diabetes mellitus (DM) and rheumatoid arthritis (RA). Results:, Food allergic children and adolescents reported fewer limitations in school work due to behavioural problems (P , 0.013), but food allergic adolescents and adults reported more pain (P = 0.020), poorer overall health (P < 0.001), more limitations in social activities (P < 0.001) and less vitality (P = 0.002) than individuals from the general population. Food allergic patients reported poorer generic HRQL than patients with DM, but better generic HRQL than patients with RA, asthma and IBS. Conclusion:, HRQL is impaired in food allergic adolescents and adults, compared to the general population, and it is intermediate in magnitude between DM and RA, asthma and IBS. Children show the least impact on generic HRQL from food allergy. [source]


    Development and validation of the Food Allergy Quality of Life Questionnaire , Adult Form

    ALLERGY, Issue 8 2009
    B. M. J. Flokstra-de Blok
    Background:, Health-related quality of life (HRQL) may be affected by food allergy. Presently, no disease-specific HRQL questionnaire exists for food allergic adults. Therefore, we developed and validated the Food Allergy Quality of Life Questionnaire , Adult Form (FAQLQ-AF) in the Dutch language. Methods:, Twenty-two food allergic patients (,18 years) were interviewed and generated 180 HRQL items. The most important items were identified by 54 food allergic patients using the clinical impact method resulting in the FAQLQ-AF containing 29 items (score range 1 ,not troubled' to 7 ,extremely troubled'). The FAQLQ-AF, the Food Allergy Independent Measure (FAIM) and a generic HRQL questionnaire (RAND-36) were sent to 100 other food allergic adults for cross-sectional validation of the FAQLQ-AF. Results:, Cross-sectional validity was assessed by the correlation between FAQLQ-AF and FAIM (, = 0.76, P < 0.001). The FAQLQ-AF had excellent internal consistency (Cronbach's , = 0.97). The FAQLQ-AF discriminated between patients who differ in severity of symptoms (anaphylaxis vs no anaphylaxis, total FAQLQ-AF score 4.9 vs 4.1; P = 0.041) and number of food allergies (>3 food allergies vs,3 food allergies, total FAQLQ-AF score 5.2 vs 4.2; P = 0.008). The total FAQLQ-AF score was correlated with one RAND-36 scale (convergent/discriminant validity). Conclusions:, The FAQLQ-AF is the first disease-specific HRQL questionnaire for food allergic adults and reflects the most important issues that food allergic patients have to face. The questionnaire is valid, reliable and discriminates between patients with different disease characteristics. The FAQLQ-AF is short and easy to use and may therefore be a useful tool in clinical research. [source]


    Quality-of-life and asthma-severity in general population asthmatics: results of the ECRHS II study

    ALLERGY, Issue 5 2008
    V. Siroux
    Background: Health-related quality-of-life (HRQL) has been poorly studied in large samples of asthmatics from the general population. HRQL and its relationship to asthma-severity were assessed among 900 asthmatics enrolled in the European Community Respiratory Health Survey. Methods: Among asthmatics, 864 completed the short form-36 (SF-36) questionnaire and 477 also completed the Asthma Quality-of-life Questionnaire (AQLQ). A 4-class asthma-severity scale, combining clinical items, forced expiratory volume in 1 s and the level of treatment and the different asthma-severity components (each of the clinical items and hospitalization) were studied in relation to HRQL. Results: Mean SF-36 Physical Component Summary (PCS) and Mental Component Summary (MCS) scores (45.5 and 48.8 respectively) were lower than expected in a general population. The mean total AQLQ score was 5.8. The AQLQ score and to a lesser extent the PCS score were significantly related to the 4-class asthma-severity scale, although the risk of having a lower HRQL score did not vary proportionally across the levels of severity. Asthma-severity had no impact on the MCS score. Asthma attack frequency and hospitalization were associated with both total AQLQ and PCS scores, whereas nocturnal symptoms and lung function were more strongly related to the AQLQ and PCS score respectively. Conclusion: In population-based asthmatics, the specific AQLQ questionnaire, and also to a lesser extent the generic SF-36 questionnaire, were sensitive to asthma-severity. Frequencies of asthma attacks, of nocturnal symptoms and hospitalization for asthma have independent impact on HRQL. [source]


    The impact of food hypersensitivity reported in 9-year-old children by their parents on health-related quality of life

    ALLERGY, Issue 2 2008
    E. Östblom
    Background:, There are only a few studies on the impact of food hypersensitivity (FHS) in children on health-related quality of life (HRQL). The present study was designed to examine this impact in a population-based birth cohort (BAMSE). Methods:, A nested case,control study was performed within the cohort. The parents of 1378 nine-year-old children filled out a generic questionnaire with 13 subscales (Child Health Questionnaire Parental Form 28 , CHQ-PF28) supplemented with disease-specific questions concerning FHS. There were 212 children with report of FHS. Another 221 children with allergic diseases but not FHS were examined for comparison. Furthermore, the impact of pronounced symptoms of FHS and of increasing levels of food-specific IgE antibodies on HRQL was also analysed. Results:, The children with FHS exhibited significantly lower scores on the subscales physical functioning, role/social limitations , physical and general health in the generic instrument. Furthermore, children with food-related symptoms from the lower airways were scored lower on Self Esteem, Parental Impact , time and Family Cohesion. Sensitization per se did not alter these patterns, but high levels of food-specific IgE-antibodies affected mental health and general health negatively. A physician's diagnosis of food allergy did not affect any of the subscales negatively. Conclusions:, Parents reported that FHS exerts a negative impact on the HRQL of 9-year-old children, in particular in children with symptoms from the lower airways or if the FHS is associated with high levels of food-specific IgE-antibodies. Healthcare-givers must put major effort into improving and maintaining the HRQL of these children. [source]


    Long-term effects of bilateral subthalamic nucleus stimulation on health-related quality of life in advanced Parkinson's disease

    MOVEMENT DISORDERS, Issue 6 2006
    Andrew Siderowf MD, MSCE
    Abstract We evaluated the long-term effects of subthalamic nucleus (STN) stimulation on health-related quality of life (HRQL) in patients with advanced Parkinson's disease (PD). STN stimulation improves motor function and decreases medication requirements in patients with advanced PD. The impact of STN stimulation on HRQL is less well established, especially beyond 1 year after surgery. We report HRQL outcomes for 18 patients with advanced PD. Patients were evaluated with the Parkinson's Disease Questionnaire-39 (PDQ-39), the Medical Outcome Study Short Form (SF-36), and the EuroQol visual analogue scale (VAS) before surgery, 6 months postoperatively, and at a long-term follow-up visit (mean, 35.9 months; range, 18,57 months after surgery). Preoperative scores on HRQL measures were compared to results obtained at short- and long-term follow-up evaluations. The VAS and all domains of the PDQ-39 except for cognition, communication, and social support showed marked improvements at 6 months after surgery. At the long-term follow-up, there were sustained improvements in the VAS (63% improvement; P = 0.0009) and in several domains of the PDQ-39 [mobility: 20%, P = 0.01; activities of daily living (ADL): 29%, P = 0.005; emotional well-being: 26%, P = 0.02; stigma: 43%, P = 0.003; and bodily discomfort: 35%, P = 0.007]. At the long-term evaluation, only the vitality domain of the SF-36 was significantly improved from baseline (16%; P = 0.01). In this selected group of patients, many of the short-term gains in HRQL persist beyond 18 months after STN implantation. Benefits in nonmotor aspects of HRQL such as bodily discomfort and stigma appear to be among the most durable. © 2006 Movement Disorder Society [source]


    Psychometric performance and clinical meaningfulness of the Patient Assessment of Constipation , Quality of Life questionnaire in prucalopride (RESOLOR®) trials for chronic constipation

    NEUROGASTROENTEROLOGY & MOTILITY, Issue 2 2010
    D. Dubois
    Abstract Background, The Patient Assessment of Constipation,Quality of Life (PAC-QOL) is a self-reported questionnaire measuring health-related quality of life (HRQL) of constipated patients and was used as secondary endpoint in three identical double-blind, randomized, placebo-controlled Phase III clinical trials. These 12-week trials in subjects with severe chronic constipation evaluated the effects of prucalopride, a selective 5-HT4 agonist given orally once daily. Methods, To consolidate the main treatment effect results observed in the prucalopride trial populations, analyses were undertaken on the pooled data of the three trials to confirm the psychometric properties of the PAC-QOL and to provide guidance for the interpretation of the clinical significance of its scores. Key Results, The evaluation of the psychometric properties confirmed the PAC-QOL reliability, validity and responsiveness to measure the impact of chronic constipation symptoms on HRQL in the prucalopride trials. The 1-point improvement in PAC-QOL scores used as target response level for the main treatment effect analyses was validated as a relevant definition of response for treatment group comparisons. Cumulative distribution curves, drawn for each treatment group to provide more complete information on treatment effects than single minimal important difference point estimates, demonstrated consistent superior effects of prucalopride over placebo on all PAC-QOL scores. Conclusions & Inferences, The PAC-QOL questionnaire is a useful measurement tool to assess, from a patient perspective, the potential therapeutic value of chronic constipation treatments in clinical trials and, by directly reflecting the patient's own perspective on constipation and its treatment, eventually also for informing daily medical practice. [source]


    The responsiveness of the OAB-q among OAB patient subgroups,

    NEUROUROLOGY AND URODYNAMICS, Issue 2 2007
    Karin S. Coyne
    Abstract Aims Although the majority of patients with overactive bladder (OAB) are continent, most patient-reported outcome measures for OAB were designed for patients with urinary incontinence. The overactive bladder questionnaire (OAB-q) was developed to assess symptom bother and HRQL among both continent and incontinent OAB patients; however, the responsiveness of the OAB-q among continent patients has not been evaluated. The purpose of this analysis was to assess the responsiveness of the OAB-q among OAB patient subgroups with a focus on continent patients. Methods Post-hoc analyses were conducted from two 12-week trials of tolterodine for the treatment of OAB. Patients completed the OAB-q and daily bladder diaries (assessing frequency, urgency, and incontinence episodes) at baseline, 4 weeks, and 12 weeks. Three patient subgroups were identified on the basis of continence status at all three timepoints: (1) continent; (2) incontinent; and (3) incontinent at baseline and continent by Week 12 (ITC). General linear models were used to compare changes from baseline, and Spearman correlations assessed the association between OAB-q changes and bladder diary changes. Effect sizes were computed separately for each group. Results A total of 262 continent, 552 incontinent, and 397 ITC patients were included in this analysis. Continent patients tended to be younger than incontinent patients, and patients were predominantly female, although continent patients had the highest percentage of male patients in both studies. Compared with continent patients, patients who were incontinent at baseline tended to have greater symptom bother and lower HRQL at baseline. All OAB-q change scores were consistently greatest for the ITC group (12.1,33.9), and greater for continent patients (10.8,28.6) than for incontinent patients (7.6,20.1). All three groups of patients experienced reductions in frequency and urgency episodes, and these changes were significantly correlated with changes in the OAB-q scales. Among all three groups, effect sizes were in the moderate-to-large range for all OAB-q subscales except Social Interaction. Conclusions The OAB-q is highly responsive to change between continent and incontinent patients with OAB, and is a valid tool for measuring treatment outcomes among continent OAB patients. Neurourol. Urodynam. 26:196,203, 2007. © 2006 Wiley-Liss, Inc. [source]


    The effect of parental mental health on proxy reports of health-related quality of life in children with sickle cell disease,

    PEDIATRIC BLOOD & CANCER, Issue 4 2010
    Julie A. Panepinto MD, MSPH
    Abstract Background The objectives of this study were to evaluate factors that influence agreement between parent-proxy and child self-report of health-related quality of life (HRQL) in sickle cell disease. We hypothesized that the mental health of the parent, parental HRQL and child characteristics would affect agreement. Procedure In a cross-sectional study of children with sickle cell disease, HRQL of the child and the parent's HRQL and mental health were assessed. The effect of parent and child characteristics on agreement between parent-proxy and child self-report of HRQL were determined. Results Rates of agreement between parent-proxy and child self-report of HRQL ranged between 42% and 49%. Parents with increased symptoms of distress had an increased odds of reporting a worse physical (Odds Ratio (OR) 1.12) and psychosocial HRQL (OR 1.10) compared to the child's self-report. Severe sickle cell disease was associated with an increased odds of the parent reporting the child's physical HRQL was worse, (OR 4.68) compared to the child's self-report. Conclusions Greater symptoms of distress in the parent are associated with worse parent-proxy report of the child's HRQL. Severe sickle cell disease is associated with greater disagreement between parent-proxy and child self-report of HRQL. These findings broaden our understanding of factors that influence proxy-reporting of a child's HRQL. Pediatr Blood Cancer. 2010;55:714,721. © 2010 Wiley-Liss, Inc. [source]


    Family, demographic and illness-related determinants of HRQL in children with brain tumours in the first year after diagnosis,

    PEDIATRIC BLOOD & CANCER, Issue 6 2009
    Anthony Penn MBBCh, MRCPCH
    Abstract Aims To evaluate the relationship between parent- and child-report Health-Related Quality of Life (HRQL) and demographic, tumour and family variables in children with a brain tumour in the first year after diagnosis and to identify determinants of HRQL at 12 months. Procedure Longitudinal prospective study: Semi-structured interviews took place approximately 1, 6 and 12 months after diagnosis. HRQL was measured using the self- and parent-report PedsQL 4.0 Total Scale Score. Tumour and treatment variables considered included tumour site and grade, hydrocephalus at diagnosis, chemotherapy and radiotherapy. Family variables included measures of family function, family support and family stress, the primary carer's coping strategies and symptoms of depression and anxiety. Univariate analyses were used at all three time points, and to identify potential early predictors of HRQL at 1 year. Regression analysis was then used to identify the most important determinants of HRQL at 1 year. Results Thirty-five patients completed the 12-month interviews. There were consistent significant negative correlations between concurrent family impact of illness and parent and self-report HRQL, and positive correlations between concurrent family support and parent-report HRQL. Treatment with radio- or chemotherapy correlated with child-report HRQL only at some time points. Multivariate analysis showed infratentorial tumour site, and poor HRQL at 1 month best predicted poor self- and parent-report HRQL at 12 months. Conclusion Children with infratentorial tumours and poor HRQL early after diagnosis tend to have poor HRQL at 1 year. While family factors are important modulators of concurrent HRQL, they do not appear important in predicting HRQL. Pediatr Blood Cancer 2009;53:1092,1099. © 2009 Wiley-Liss, Inc. [source]