Development and validation of a patient-based health-related quality of life questionnaire in schizophrenia: the S-QoL Utility of the PedsQL Rheumatology Module as an Outcome Measure in Juvenile Fibromyalgia Determinants of objective and subjective quality of life in first-time-admission schizophrenic patients in Poland: a longitudinal study Psychometric assessment of the Quality of Life Index. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Mapping the Paediatric Quality of Life Inventory (PedsQL™) Generic Core Scales onto the Child Health Utility Index–9 Dimension (CHU-9D) Score for Economic Evaluation in Children The Link Between Health-Related Quality of Life and Clinical Symptoms Among Children with Attention-Deficit Hyperactivity Disorder Evaluating the ability to detect change of health‐related quality of life in children with Hodgkin disease Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties. Changes in quality of life in chronic psychiatric patients: A comparison between EuroQol (EQ-5D) and WHOQoL Health-related quality of life for pediatric emergency department febrile illnesses: an Evaluation of the Pediatric Quality of Life Inventory™ 4.0 generic core scales The Pediatric Cancer Quality of Life Inventory: A modular approach to measuring health‐related quality of life in children with cancer Determinants of Health-Related Quality of Life in Long-Term Survivors of Hodgkin's Lymphoma Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample Health-related quality of life assessment in euthymic and depressed patients with bipolar disorder. Psychometric performance of four self-report measures. Measuring the impact of Parkinson's disease with the Parkinson's Disease Quality of Life questionnaire. Validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30) as a measure of psychosocial function in breast cancer patients.
We developed a self-administered instrument to assess  health-related quality of life ( HRQL ) among people with schizophrenia . The S-QoL , based on Calman 's approach to the subject 's point of view , is a multidimensional instrument that is sensitive to change . The scale is a 41-item question naire with eight subscales ( psychological well-being , self-esteem , family relationships , relationships with friends , resilience , physical well-being , autonomy and sentimental life ) and a total score . In-depth interviews with patients determined the pertinent issues for item development . The validation study , performed with 207 patients , showed high internal consistency reliability , reproducibility and responsiveness . Construct validity was confirmed using established clinical and HRQL measures . S-QoL covers domains that differ from areas tapped in other measures , with greater responsiveness . The S-QoL is an efficient instrument for the measurement of the impact of schizophrenia  on individuals ' lives The PedsQL rheumatology module is currently the only available measure of disease‐specific quality of life for children and adolescents with juvenile fibromyalgia ( FM ) , but limited information has been published about the psychometric properties of the instrument , specifically in juvenile FM . The objective of this study was to assess the reliability , validity , and sensitivity to change of the 5 scales ( pain and hurt , daily activities , treatment , worry , and communication ) of the patient and parent proxy versions of the PedsQL rheumatology module in the context of a r and omized controlled trial in juvenile FM Objectives This study involved a naturalistic , prospect i ve project assessing objective and subjective dimensions of quality of life ( QoL ) and the range of its putative determinants in first-episode schizophrenia . Methods Seventy-four patients , mean age 24.7 years , participated in the study . The patients were assessed 1 month following the first hospitalisation ( Time 1 ) , 12 months later ( Time 2 ) , and 4–6 years after Time 1 ( Time 3 ) . The Social Functioning Scale and World Health Organisation Quality of Life-BREF ( WHOQOL-BREF ) were applied to evaluate objective and subjective QoL , respectively . The Positive and Negative Syndrome Scale was used to examine psychopathological status , and the Global Assessment Scale was applied to evaluate social adjustment prior to hospitalisation . Results The objective and subjective QoL was relatively low at Time 1 . Over time , the objective QoL improved in three domains , decreased in one domain , and remained stable in three domains . The subjective QoL did not change . The most important predictors of both dimensions of QoL were psychopathology and duration of untreated psychosis . Conclusions Because psychopathology seems to have the greatest impact on the QoL , there is a need to develop community psychosocial treatment to reduce these symptoms and to support patients in the early phase of the disease The purpose of this study was to examine the psychometric properties of the  Quality of Life Index  ( QLI ) ( Ferrans & Powers , 1985a ) . The sample consisted of 349 patients selected r and omly from the adult , in-unit hemodialysis patient population of Illinois . Factor analysis was used to examine the underlying factor structure . A four-factors solution best fit the data , indicating that there were four dimensions underlying the QLI : health and functioning , socioeconomic , psychological/spiritual , and family . Factor analysis of the four primary factors revealed one higher order factor , representing quality of life . Construct validity also was supported by the contrasted groups approach . As predicted , it was found that those who had higher incomes had significantly higher quality of life scores on the social and economic subscale . Support for convergent validity was provided by a strong correlation ( r = .77 ) between scores from the QLI and an assessment of life satisfaction . Findings supported the internal consistency reliability of the entire QLI ( alpha = .93 ) and the four subscales ( alphas = .87 , .82 , .90 , .77 ) BACKGROUND The application of health-related quality of life  ( HRQOL ) as a pediatric population health measure may facilitate risk assessment and re source allocation , the tracking of community health , the identification of health disparities , and the determination of health outcomes from interventions and policy decisions . OBJECTIVE To determine the feasibility , reliability , and validity of the 23-item PedsQL 4.0 ( Pediatric Quality of Life Inventory ) Generic Core Scales as a measure of pediatric population health for children and adolescents . DESIGN Mail survey in February and March 2001 to 20 031 families with children ages 2 - 16 years throughout the State of California encompassing all new enrollees in the State 's Children 's Health Insurance Program ( SCHIP ) for those months and targeted language groups . METHODS The PedsQL 4.0 Generic Core Scales ( Physical , Emotional , Social , School Functioning ) were completed by 10 241 families through a statewide mail survey to evaluate the HRQOL of new enrollees in SCHIP . RESULTS The PedsQL 4.0 evidence d minimal missing responses , achieved excellent reliability for the Total Scale Score ( alpha = .89 child;.92 parent report ) , and distinguished between healthy children and children with chronic health conditions . The PedsQL 4.0 was also related to indicators of health care access , days missed from school , days sick in bed or too ill to play , and days needing care . CONCLUSION The results demonstrate the feasibility , reliability , and validity of the PedsQL 4.0 as a pediatric population health outcome . Measuring pediatric HRQOL may be a way to evaluate the health outcomes of SCHIP Background The Paediatric Quality of Life Inventory ( PedsQL ™ ) question naire is a widely used , generic instrument design ed for measuring health-related quality of life ( HRQoL ) ; however , it is not preference-based and therefore not suitable for cost – utility analysis . The Child Health Utility Index–9 Dimension ( CHU-9D ) , however , is a preference-based instrument that has been primarily developed to support cost – utility analysis . Objective This paper presents a method for estimating CHU-9D index scores from responses to the PedsQL ™ using data from a r and omised controlled trial of prednisolone therapy for treatment of childhood corticosteroid-sensitive nephrotic syndrome . Methods HRQoL data were collected from children at r and omisation , week 16 , and months 12 , 18 , 24 , 36 and 48 . Observations on children aged 5 years and older were pooled across all data collection timepoints and were then r and omised into an estimation ( n = 279 ) and validation ( n = 284 ) sample . A number of models were developed using the estimation data before internal validation . The best model was chosen using multi-stage selection criteria . Results Most of the models developed accurately predicted the CHU-9D mean index score . The best performing model was a generalised linear model ( mean absolute error = 0.0408 ; mean square error = 0.0035 ) . The proportion of index scores deviating from the observed scores by < 0.03 was 53 % . Conclusions The mapping algorithm provides an empirical tool for estimating CHU-9D index scores and for conducting cost – utility analyses within clinical studies that have only collected PedsQL ™ data . It is valid for children aged 5 years or older . Caution should be exercised when using this with children younger than 5 years , older adolescents ( > 13 years ) or patient groups with particularly poor quality of life . IS RCT N Registry ABSTRACT . Clinical research on attention-deficit hyperactivity disorder ( ADHD ) has begun to integrate measures of health-related quality of life ( HRQL ) as part of the overall assessment of treatment outcomes . This study examines the association between HRQL and measures of clinical symptoms of ADHD . Data were gathered from 297 children and adolescents in an 8-week , r and omized , double-blind , placebo-controlled , clinical trial of atomoxetine treatment for ADHD . HRQL was assessed with the Child Health Question naire 50-item Parent Form . ADHD symptoms were assessed with the ADHD Rating Scale-IV ; Parent Version and Clinical Global Impressions-ADHD-Severity . Associations between HRQL and clinical symptoms were assessed with correlations , analyses of variance with post hoc comparisons , and t tests . The Child Health Question naire 50-item Parent Form scales assessing psychosocial domains of HRQL were significantly negatively correlated with clinical measures . Improvement in clinical symptoms was associated with corresponding improvement in psychosocial aspects of HRQL . The findings suggest that HRQL instruments can add important information to efficacy measures in clinical trials of ADHD treatment We evaluated 4 different health‐related quality of life ( HRQL ) measures prospect ively to determine their ability to detect change over time : the Health Utilities Index Mark 2 and Mark 3 , the Pediatric Quality of Life Inventory ( PedsQL ) 4.0 Generic Core and Cancer Module , the EuroQol EQ‐5D visual analogue scale ( EuroQol ) , and the Lansky Play‐Performance Scale To gain a complete picture of a child 's health-status , measurement of health-related quality of life ( HRQL ) is necessary . Since parents do not accurately perceive children 's HRQL , information must be obtained from the children themselves . The aim of this study was to determine the minimum age and reading skills required by children to complete competently the Paediatric Asthma Quality of Life Question naire ( PAQLQ ) , the Health Utilities Index  ( HUI ) , the Feeling Thermometer and the St and ard Gamble , and to evaluate the validity of each for measuring HRQL in children with asthma . Fifty two children ( age 7 - 17 yrs ) with symptomatic asthma participated in a 9 week single cohort study with HRQL and clinical asthma control assessed every 4 weeks . All children provided very reliable data for the PAQLQ and the HUI but they needed > or = grade 6 reading skills to complete the St and ard Gamble and > or = grade 2 skills for the Feeling Thermometer . In those children who were able to provide reliable data , the PAQLQ had the best discriminative and evaluative measurement properties , followed closely by the Feeling Thermometer . Measurement properties in the St and ard Gamble were weaker and although the HUI was very reliable it was not actually measuring asthma-specific HRQL . The Paediatric Asthma Quality of Life Question naire may be used with confidence in clinical studies and practice to provide a profile of children 's day-to-day experiences . In those children with adequate skills to complete the test reliably , the Feeling Thermometer provides a good estimate of the value that children place on their asthma health status It has often been postulated that simple , short question naires are unable to reflect complex changes in well-being of individuals with chronic psychiatric disorders . To investigate these assumptions we included two recently developed instruments to measure quality of life  ( the WHOQoL-Bref and the EuroQoL EQ-5D ) in a r and omised control trial ( RCT ) in which two treatment conditions were compared . Aims of the study were to assess the sensitivity and validity of these  quality of life (QoL)-instruments  , to establish their relationship and to examine the predictors of changes in QoL. Subjective changes in QoL were measured on three assessment s waves in a period of 18 months and compared to objective changes in psychopathology and social functioning in a sample of 76 chronic schizophrenic patients who participated in the RCT . Results indicated that both WHOQoL-Bref and EuroQoL EQ-5D are capable of detecting changes in QoL over time in physical and psychological well-being . The instruments partly measure the same aspects of QoL , indicated by 50 % common variance on total scores . Reduction of positive psychotic symptoms appeared to be the most important factor in improving QoL. The weighted TTO-score of EuroQoL-5D , which is often used as an index in economic evaluations of health care , did however not correspond with these changes , which indicates that it is less sensitive to changes in social and psychological well-being . It ’s use as the core measure in ( economic ) health evaluation in the field of psychiatry therefore seems less appropriate Objective We sought to assess the validity and short-term responsiveness of the Pediatric Quality of Life Inventory ™ 4.0 Generic Core Scales ( PedsQL ™ ) for febrile illnesses evaluated in the pediatric emergency department ( ED ) . Design Prospect i ve cohort study of children 2–18 years discharged after ED evaluation for fever ( ≥ 38 ° C ) .  Self-administered , parent-report of health-related quality of life ( HRQOL ) was assessed using the PedsQL ™ Acute Version , a vali date d HRQOL instrument . HRQOL was measured on ED presentation and at 7–10 day follow-up . At follow-up , duration of fever , child functional impairment , missed daycare/school , and disrupted family unit functioning , were assessed . Results Of 160 subjects enrolled , 97 ( 61 % ) completed the study ; mean follow-up was 8.7 days . Mean total HRQOL score on ED presentation was 76.4 ; mean follow-up score was 86.3 . Compared to subjects that returned to baseline , statistically significant differences in HRQOL were noted for those with prolonged fever , child functional impairment , and relapse . Significant correlation was observed between HRQOL at follow-up and days of daycare/school missed ( r = -0.35 , p = .003 ) and days of family disruption ( r = -0.43 , p < .001 ) . Mean change in HRQOL within subjects , from ED visit to follow-up , was + 9.8 ( 95 % CI : 5.6–14.6 ) . Effect size was 0.53 , indicating moderate responsiveness . Conclusion The PedsQL ™ appears to be a valid and responsive indicator of HRQOL for short-term febrile illnesses evaluated in the ED Measurement of pediatric cancer patients ' health‐related quality of life ( HRQL ) in phase III r and omized , controlled clinical trials is being recognized increasingly as an essential component in evaluating the comprehensive health outcomes of modern anti‐neoplastic treatment protocol s. Use of a brief core measure of HRQL plus disease‐specific symptom modules is a way to assess specific HRQL outcomes with a minimum of subject burden . Demonstrating a measure 's feasibility , reliability and validity also represents children 's ability to provide reliable and valid responses to HRQL questions . The Pediatric Cancer Quality of Life Inventory ( PCQL ) Modular Approach consists of a 15‐item core measure of HRQL and 2 specific symptom modules : pain and nausea . To vali date a patient‐report form and a parent‐report form , the PCQL was administered to 291 pediatric cancer patients and to their parents . Feasibility and range of measurement , as well as patient – parent concordance , were assessed . Internal consistency reliability was assessed via Cronbach 's alpha . Validity was determined by the known‐groups approach and by correlating PCQL scores with days missed from school . Patients had minimal missing data , and the range of measurement for the items was good . Patient – parent concordance was large but not perfect . For both patient and parent forms , internal consistency reliability of the PCQL core scale ( 0.83 and 0.86 , respectively ) was strong . The internal consistency reliabilities of the 2 symptom modules for both patient and parent forms were in the acceptable range for group comparisons . Regarding clinical validity , the core scale and the 2 symptom modules distinguished between patients on and off treatment for both patient and parent reports . Further , both patient and parent reports correlated with days of missed school in the past 6 and 12 months . The PCQL Modular Approach has demonstrated acceptable internal consistency reliability and clinical validity for both patient‐report and parent‐report forms . By implication , children are capable of providing reliable and valid responses to these HRQL questions . Int . J. Cancer Suppl . 12:71–76 , 1999 . © 1999 Wiley‐Liss , In this study health-related quality of life ( HRQL ) in long-term survivors of Hodgkin 's lymphoma ( HL ) was evaluated and the findings were analyzed using a conceptual model developed by Wilson and Cleary . A better underst and ing of the relationships between the variables explaining HRQL may improve care and rehabilitation of HL patients . The population s were long-term survivors of HL ( n=121 ) and a control group ( n = 236 ) . Participants were approached with one semi-structured interview , an extended version of the Schedule for the Evaluation of Individual Quality of Life – Direct Weighting ( SEIQoL-DW ) and three st and ardized question naires : Hospital Anxiety and Depression ( HAD ) scale , Short Form 12 health survey question naire ( SF-12 ) and  Sense of Coherence ( SOC ) scale . No differences regarding the mean scores were found between the HL survivors and the controls except for the SF-12 , where the patients considered themselves to be in poorer physical health than the controls ( p < 0.01 ) . Even though physical health was diminished , patients did not evaluate overall QoL worse compared to the controls . The major determinants of perception of general QoL were self-rated physical and mental health as well as SOC . The HRQL of persons who have survived a median of 14years with HL is similar to that of controls Objective To evaluate feasibility , internal consistency , test – retest reliability , and concurrent and discriminative validity of the Infant and Toddler Quality of Life Question naire ( ITQOL ) for parents of pre-school children with 12 scales ( 103-items ) covering physical and psychosocial domains and impact of child health on parents , in comparison with the TNO-AZL Pre-school Children Quality of Life Question naire ( TAPQOL ) . Methods Parents of children from a r and om general population sample ( 2 months–4 years old ; n = 500 ) and of an outpatient clinic sample of children with respiratory disease ( 5 months–5 1/2 years old ; n = 217 ) were mailed ITQOL and TAPQOL question naires ; a retest was sent after two weeks . Results Feasibility : The response was ≥80 % with few missing and non-unique ITQOL-answers ( < 2 % ) in both study population s. Some ITQOL-scales ( 3–4 scales ) showed a ceiling effect ( > 25 % at maximum score ) . Internal consistency : All Cronbach ’s α > 0.70 . Test – retest Intraclass Correlation Coefficients ( ICCs ) were moderate or adequate ( ≥0.50 ; p lt ; 0.01 ) for 10 ITQOL-scales . Validity : ITQOL-scales , with a few exceptions , correlated better with predefined parallel TAPQOL scales than with non-parallel scales . Five to eight ITQOL-scales discriminated clearly between children with few and with many parent-reported chronic conditions , between children with and without doctor-diagnosed respiratory disease and with a low and a high parent-reported medical consumption ( p < 0.05 ) . Conclusions This study supported the evidence that the ITQOL is a feasible instrument with adequate psychometric properties . The study provided reference ITQOL scores for gender/age subgroups . We recommend repeated evaluations of the ITQOL in varied population s , especially among very young children , including repeated assessment s of test – retest characteristics and evaluations of responsiveness to change . We recommend developing and evaluating a shortened ITQOL version The purpose of this study was to evaluate the psychometric properties of selected health-related quality of life ( HRQL )  self-report measures in 62 euthymic and depressed patients diagnosed with bipolar disorder . Patients completed the Quality of Life in Depression Scale ( QLDS ) , Mental Health Index-17 ( MHI-17 ) , Cognitive Function Scale , and Medical Outcomes Study Short Form-36 ( SF-36 ) at baseline and 8 weeks following treatment . Hamilton and Young Rating Scales were used to assess clinical status and vali date the HRQL measures . The MHI-17 , Cognitive Function Scale , QLDS , and SF-36 social function , vitality , role limitations -emotional , and mental health scales have good reliability and validity , and are responsive to changes in clinical status in patients with bipolar disorder . Although the small sample size limits generalizablity , euthymic and depressed out patients with bipolar disorder appear to contribute reliable self reports on selected aspects of their quality of life OBJECTIVES To assess the validity of the Parkinson 's Disease Quality of  Life  ( PDQL ) question naire , a patient-specific multi-dimensional quality of life measure , in a community-based sample of patients with Parkinson 's disease ( PI ) ) using st and ardized measures of disease severity , depressive symptomatology and cognitive function . DESIGN A group of 194 patients with probable PD were r and omly selected from a community-based register and were invited to self-complete the 37-item PDQL .  Disease severity was measured by the disease-specific Webster scale , cognition by the  CAMCOG neuropsychological test  and depressive symptomatology by the self-report 15-item GDS-15 geriatric depression scale . RESULTS A total of 136 patients returned completed PDQL question naires . Significant differences ( P < 0.05 ) emerged between the pooled PDQL score of patients grouped on the basis of disease severity . Depressive symptoms and cognition were also associated with poorer perceived quality of life as measured by the PDQL . CONCLUSIONS The results of this study are indicative of the validity of the PDQL as an important additional measurement which reflects the impact of PD from the patient perspective . It shows poorer quality of life to be associated with increasing age , disease severity more severe depressive symptomatology and impaired cognitive functioning . However , the responsiveness of this instrument in the evaluation of care in PD remains to be determined The European Organisation for Research and Treatment of Cancer ( EORTC ) quality of life question naire QLQ-C30 has been developed as a quantitative measure of health-related quality of life for use in clinical trials of cancer patients . Validity is an important measurement property of all scientific tests . This study contributes to the iterative process of validating the question naire by focusing on the psychosocial subscales of the QLQ-C30 , using baseline data from 150 patients participating in a r and omised trial of supportive group therapy for metastatic breast cancer . The results provide strong support for the discriminative validity of the global health/ quality of life , role function and social function subscales of the  QLQ-C30  , in patients differing according to clinical criteria . The psychosocial focus of the trial enabled expansion of criteria used to form patient subgroups , beyond medical factors , and consequently support was demonstrated for the discriminative validity of the emotional and cognitive function subscales . The degree of support for these subscales was less substantial than for the other QLQ-C30 subscales as there were fewer relevant criteria . Convergence assessed by correlations with independent measures of psychosocial function provides strong support for the convergent validity of the emotional function , role function and global health/ quality of life subscales of the QLQ-C30 , and moderate support for the social function subscales . There was little opportunity for the cognitive function subscale to associate with conceptually analogous subscales . Further testing is recommended with more comprehensive and specific measures of cognitive status . In general , the psychosocial subscales of the QLQ-C30 appear to be measuring the concepts they are purported to measure
The systematic review revealed widespread utilization of developmentally appropriate QL instruments but less frequent use of both self and proxy reports and an inconsistent approach to age group specificities .
Research on the quality of life ( QL ) of children/adolescents with psychological disorders has flourished over the last few decades .
Given the developmental challenges of QL measurements in pediatric population s , the aim of this study was to ascertain the extent to which a developmental approach to  QL assessment has been applied to pedopsychiatric QL research .