The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome Development of a brief measure to assess quality of life in obesity. Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. The Assessment of Quality of Life (AQoL) instrument: a psychometric measure of Health-Related Quality of Life Impact on psychosocial outcomes of a nationally available weight management program tailored for individuals with type 2 diabetes: Results of a randomized controlled trial. Determinants of objective and subjective quality of life in first-time-admission schizophrenic patients in Poland: a longitudinal study The impact of individual quality of life assessment on psychosocial attention in patients with chest malignancies: a randomized study Individual quality of life in patients undergoing hip replacement A pilot cluster randomized controlled trial of structured goal-setting following stroke Prognostic value of quality of life scores for time to progression (TTP) and overall survival time (OS) in advanced breast cancer. Psychometric assessment of the Quality of Life Index. Psychometric performance and clinical meaningfulness of the Patient Assessment of Constipation-Quality of Life questionnaire in prucalopride (RESOLOR) trials for chronic constipation. Determinants of Health-Related Quality of Life in Long-Term Survivors of Hodgkin's Lymphoma Validity of the Assessment of Quality of Life (AQoL) utility instrument in patients with operable and inoperable lung cancer. Health-related quality of life assessment in euthymic and depressed patients with bipolar disorder. Psychometric performance of four self-report measures. Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-OV28) in assessing the quality of life of patients with ovarian cancer.
Purpose To report the experience of using the SEIQoL-DW for the measurement of quality of life with patients with advanced COPD and consider its feasibility , acceptability and appropriateness for a Phase III r and omised controlled trial ( RCT ) . Methods The SEIQoL-DW was administered according to its instructions within a Phase II RCT 3–5 times per patient , across 13 patients and the process audio-recorded . Quantitative and qualitative criteria were used to assess feasibility , acceptability and appropriateness . Qualitative analysis of the transcripts and fieldwork notes was conducted using Framework Analysis . Results The SEIQoL-DW steps ( of identifying five quality of life cues , rating their functioning and importance ) were completed at 48/51 interviews . However , some respondents were overwhelmed by the scripted introduction , experienced difficulty with cue identification , and focused only on certain types of cues ( Step 1 ) ; some had difficulty interpreting and rating the concept of Step 2 ; and some had difficulty interpreting ‘ importance ’ and manipulating the SEIQoL-DW disc ( Step 3 ) . Conclusions Patients with advanced COPD were able to complete the SEIQoL-DW but analysis of its administration identified practical and conceptual concerns which question the validity of the results obtained . Suggestions for the development of the SEIQoL-DW and future feasibility studies are given OBJECTIVE Obesity research ers have a growing interest in measuring the impact of weight and weight reduction on quality of life . The Impact of Weight on  Quality of Life question naire ( IWQOL ) was the first self-report instrument specifically developed to assess the effect of obesity on quality of life . Although the IWQOL has demonstrated excellent psychometric properties , its length ( 74 items ) makes it somewhat cumbersome as an outcome measure in clinical research . This report describes the development of a 31-item version of the IWQOL ( IWQOL-Lite ) . RESEARCH METHODS AND PROCEDURES IWQOLs from 996 obese patients and controls were used to develop the IWQOL-Lite . Psychometric properties of the IWQOL-Lite were examined in a separate cross-validation sample of 991 patients and controls . RESULTS Confirmatory factor analysis provided strong support for the adequacy of the scale structure . The five identified scales of the IWQOL-Lite  ( Physical Function , Self-Esteem , Sexual Life , Public Distress , and Work ) and the total IWQOL-Lite score demonstrated excellent psychometric properties . The reliability of the IWQOL-Lite scales ranged from 0.90 to 0.94 and was 0.96 for the total score . Correlations between the IWQOL-Lite and collateral measures supported the construct validity of the IWQOL-Lite . Changes in  IWQOL-Lite scales over time correlated significantly with changes in weight , supporting its sensitivity to change . Significant differences in IWQOL-Lite scale and total scores were found among groups differing in body mass index , supporting the utility of the IWQOL-Lite across the body mass index spectrum . DISCUSSION The IWQOL-Lite appears to be a psychometrically sound and clinical ly sensitive brief measure of quality of life in obese persons We compared the change over time of individual quality of life ( QOL ) versus health-related QOL ( HRQOL ) and functional status in palliative care patients with amyotrophic lateral sclerosis ( ALS ) . Forty-two patients with ALS performed the following assessment s : the ALS functional rating scale ( ALSFRS ) , the Sickness Impact Profile ( SIP ) , the Short Form 36 ( SF-36 ) , and the  Schedule for the Evaluation of Individual QOL-Direct Weighting  ( SEIQOL-DW ) . The SF-36 and the SEIQOL-DW were assigned at r and om . Patients were examined at least three times at 2-month intervals . There was a significant decrease from visit 1 to 3 ( 4-month period ) in the function-based values of the SIP , SF-36 , and ALSFRS . Despite this progressive decline of physical function and HRQOL , individual QOL as assessed by the SEIQOL-DW remained stable throughout the observation period . Correspondingly , there was a clear correlation between the ALSFRS , the SIP , and the SF-36 , but no correlation between these scales and the SEIQOL-DW . The QOL domains most often named in the SEIQOL-DW were family , friends/social life , health , and profession . Thus , individual QOL appears to be largely independent from physical function in severely ill patients with ALS . Because of the characteristics of the scale , assessment of individual QOL may have an interventional value in palliative care This paper describes constructing the Assessment of Quality of Life ( AQoL ) instrument ; design ed 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 cl aim 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 research ers . These were administered to a construction sample , comprising hospital patients , and community members chosen at r and om . 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 α = 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 underst and and is quickly completed . Its initial properties suggest it may be widely applicable AIMS Type 2 diabetes mellitus ( T2DM ) can substantially decrease quality of life ( QOL ) . This study examined the effects on QOL-relevant psychosocial measures of a widely available commercial weight loss program enhanced for individuals with T2DM . METHODS A year-long multi-site r and omized clinical trial compared the Weight Watchers ( WW ) approach , supplemented with phone and email counseling with a certified diabetes educator ( CDE ) , to brief st and ard diabetes nutrition counseling and education ( St and ard Care ; SC ) . Participants were 400 women and 163 men ( N=279 WW ; 284 SC ) with T2DM [ mean ( ±SD ) HbA1c 8.32±1 % ; BMI = 37.1±5.7kg/m2 ; age=55.1 ± 9.1years ] . Psychosocial outcomes were assessed at baseline , month 6 , and month 12 using a diabetes specific psychosocial measure ( Diabetes Distress Scale [ DDS ] ) , Impact of Weight on Quality of Life-Lite scale ( IWQOL ) , a generic QOL measure ( SF-36 ) , and a depression screen ( PHQ-9 ) . RESULTS WW participants showed significantly greater improvements than did SC participants on all DDS subscales and total score and on IWQOL total score and physical function , sex life and work domains ( all ps<.05 ) . There was no significant treatment effect on SF-36 scores or PHQ-9 . CONCLUSIONS WW enhanced for individuals with T2DM was superior to SC in improving psychosocial outcomes most specific to T2DM and obesity . Available commercial WL programs , combined with scalable complementary program-specific diabetes counseling , may have benefits that extend to diabetes-related distress and weight-relevant QOL 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 Purpose The aims of this study were to investigate the impact of individual health-related quality of life ( HRQL ) evaluation on the attention towards symptom control and psychosocial function in advanced cancer patients . Methods Patients with advanced lung cancer or mesothelioma who attended a pulmonary oncology outpatient clinic were r and omized to either of two strategies for HRQL assessment  . The experimental group ( EG ) answered the EORTC QLQ-C30 + LC13 question naire using a digital table interface , with outprint of aggregated scale scores presented to the consulting physician as a support for evaluation . The control group ( CG ) answered a paper version of the same question naire , which was stored for later analysis . Consultations were audio-recorded . Outcome measures were a quantitative content analysis of audio-recorded consultations and medical and psychosocial interventions abstract ed from clinical records . Results One hundred seventy-one patients were r and omized and participated in the study .  Issues regarding emotional function were more frequently discussed during consultations in the EG ( p < 0.05 ) . Similarly , interventions directed to emotional and social concerns were more frequent in the EG ( p = 0.013 and p = 0.0036 , respectively ) . HRQL measures over time were similar across the groups . Conclusion Individual HRQL assessment increased the attention to psychosocial functioning in patients with chest malignancies Quality of life ( QoL ) assessment is becoming increasingly important for measuring the impact of illnesses , diseases , and their treatment and for deciding priorities when allocating re sources . We developed a novel method to measure QoL from the perspective of the individual patient . The schedule for the evaluation of individual quality of life ( SEIQoL ) was devised from the technique known as judgment analysis to measure patients ' level of functioning in five self-nominated facets of life and the relative weight or importance attached to these areas . We applied this method , together with traditional measures of health status , in a prospect i ve intervention study of 20 patients undergoing unilateral total hip-replacement surgery with six-month follow-up by comparison with matched , non-patient controls .  Health status was significantly improved by hip replacement on the McMaster health index question naire ( p less than 0.001 ) and the arthritis impact measurement scales ( p less than 0.001 ) . Individually measured QoL was significantly increased after surgery when measured by SEIQoL ( p less than 0.02 ) . The individual nature of QoL was reflected in the variety of life areas nominated as important by individual patients , the differences in relative weights attached to these areas , and the complex nature of the changes that occurred postoperatively . Our data not only highlight such individuality but also show that SEIQoL provides a means by which this can be assessed scientifically Objective : To determine the feasibility , the cluster design effect and the variance and minimal clinical importance difference in the primary outcome in a pilot study of a structured approach to goal - setting . Design : A cluster r and omized controlled trial . Setting : Inpatient rehabilitation facilities . Subjects : People who were admitted to inpatient rehabilitation following stroke who had sufficient cognition to engage in structured goal - setting and complete the primary outcome measure . Interventions : Structured goal elicitation using the Canadian Occupational Performance Measure . Main measures : Quality of life at 12 weeks using the Schedule for Individualised Quality of Life ( SEIQOL-DW ) , Functional Independence Measure , Short Form 36 and Patient Perception of Rehabilitation ( measuring satisfaction with rehabilitation ) . Assessors were blinded to the intervention . Results : Four rehabilitation services and 41 patients were r and omized . We found high values of the intraclass correlation for the outcome measures ( ranging from 0.03 to 0.40 ) and high variance of the SEIQOL-DW ( SD 19.6 ) in relation to the minimally importance difference of 2.1 , leading to impractically large sample size requirements for a cluster r and omized design . Conclusions : A cluster r and omized design is not a practical means of avoiding contamination effects in studies of inpatient rehabilitation goal - setting . Other techniques for coping with contamination effects are necessary The purpose of the study was to investigate whether baseline quality of life ( QoL ) and changes in QoL scores from baseline are prognostic for time to progression ( TTP ) and /or overall survival ( OS ) in patients with advanced breast cancer receiving docetaxel ( T ) or sequential methotrexate and 5-fluorouracil ( MF ) .  QoL was assessed at baseline and before each treatment using the European Organization for Research and Treatment of Cancer ( EORTC ) Quality of Life Question naire ( QLQ-C30 ) . Survival curves and probabilities were estimated using the Kaplan-Meier technique . The Cox proportional hazards regression model was used for both the univariate and multivariate analyses to explore relationships between baseline QoL variables and TTP , as well as OS . In the univariate analysis , more severe pain and fatigue at baseline were predictive for a shorter OS ; global QoL , physical functioning and appetite loss had a borderline significance ( P=0.0130 for global QoL ; P=0.0256 for physical functioning : P=0.0149 for appetite loss ) . World Health Organization ( WHO ) performance status was significantly predictive for OS . In the multivariate analysis , more severe pain at baseline was predictive for a shorter OS . In contrast , baseline QoL had no prognostic value for the duration of TTP . QoL change scores from baseline QoL predicted neither OS nor TTP . Our findings suggest that while QoL measurements are important in evaluating patients ' QoL , they have no great importance in predicting primary clinical endpoints such as TTP or OS in advanced breast cancer patients 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 Patient Assessment of Constipation- Quality of Life ( PAC-QOL ) is a self-reported question naire measuring health-related quality of life ( HRQL ) of constipated patients and was used as secondary endpoint in three identical double-blind , r and omized , placebo-controlled Phase III clinical trials . These 12-week trials in subjects with severe chronic constipation evaluated the effects of prucalopride , a selective 5-HT(4 ) agonist given orally once daily . METHODS To consoli date the main treatment effect results observed in the prucalopride trial population s , 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 vali date d 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 question naire 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 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 There have been few longitudinal studies of quality of life in patients with all stages of lung cancer , particularly those that have included measures of utility . The purpose of this study was to examine the psychometric properties of the Assessment of Quality of Life instrument ( AQoL )  in patients with lung cancer . The AQoL is a health-related quality of life question naire and provides a descriptive system for a multi-attribute utility instrument ( MAU ) , so that scores can be used in cost-utility evaluations . In the present study the reliability ( internal consistency ) of the AQoL was examined and the concurrent validity was assessed using the Medical Outcomes 36-item Short Form Health Survey ( SF-36 ) as the comparator instrument . The sensitivity to different health states of the AQoL and the responsiveness to change over time was also examined . A prospect i ve , non-experimental cohort study was undertaken . Ninety-two participants with all stages of lung cancer were recruited from a tertiary multi-disciplinary lung cancer clinic . Ninety participants had non-small cell lung cancer ( NSCLC ) and two had limited stage small cell lung cancer . The  AQOL and SF-36 surveys  were administered concurrently at baseline . In patients with NSCLC the surveys were then repeated 3 and 6 months later . Correlations between the baseline AQoL summary scales and SF-36 summary scales support the divergent and convergent validity of the AQoL.  Reliability was also found to be sufficient ( Cronbach 's Alpha=0.76 ) . In addition , in patients with inoperable NSCLC , baseline AQoL scores were found to be predictive of survival at 6 months in Cox proportional hazards multivariate analysis . However , the physical components summary score of the SF-36 was more sensitive to differences in health states between patients with different stages of NSCLC at 6 months of follow-up and more responsive to change over time in both operable and inoperable patients with NSCLC than the AQoL. The findings support the construct validity and reliability of the  AQoL  in this population . However , there remains some uncertainty about whether the AQoL has sufficient sensitivity to different health states in this population . Further studies using other MAU instruments may determine whether alternative instruments are more sensitive to different health states in individuals with lung cancer 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 OBJECTIVE The aim was to prospect ively measure quality of life in patients with malignant blood disorders following stem cell transplantation ( SCT ) using an individualized and a st and ardized measure . METHODS Twenty-two consecutive patients were assessed before and one year following SCT , using a generic and disease-related version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting ( SEIQoL-DW ) and the EORTC QLQ-C30 . Results of the QLQ-C30 were compared with Swedish norm values . RESULTS A majority of the patients reported concerns related to health before as well as one year after SCT , recorded by both instruments . Mean scores produced by the SEIQoL-DW , and four scales of the EORTC QLQ-C30 , showed a change over time , indicating improved quality of life one year after SCT . In comparison with Swedish norm values for the EORTC QLQ-C30 , SCT recipients reported a worse functioning . CONCLUSIONS In addition to well-known disease and treatment-related problems , areas not typically included in st and ardized instruments were nominated in the disease-related SEIQoL-DW . Such areas included positive aspects , e.g. a changed view of life and oneself . The results support the use of the generic and disease-related SEIQoL-DW to achieve a comprehensive picture of patient 's clinical situation under treatment or when recovering from illness This study defines the psychometric properties of the European Organisation for Research and Treatment of Cancer ( EORTC ) quality of life ( QOL ) question naire design ed to measure the QOL of patients with ovarian cancer . The ovarian cancer module ( EORTC QLQ-OV28 ) was developed to supplement the EORTC QLQ-C30 . The core question naire and the QLQ-OV28 were prospect ively administered to 368 ovarian cancer patients after they had been treated with radical or debulking surgery followed by chemotherapy .  The QLQ-OV28 module assesses abdominal/gastrointestinal symptoms , peripheral neuropathy , other chemotherapy side-effects , hormonal/menopausal symptoms , body image , attitude to disease/treatment and sexual functioning . Question naires were well accepted by patients , baseline compliance rates were 86 % , 72 % provided a second assessment , less than 3 % of the items had missing data . Multi-trait scaling analyses confirmed the hypothesised scales . All hypothesised scales exhibited good psychometric properties . These results support the clinical and psychometric validity of the EORTC QLQ-OV28 module as a supplement to the EORTC QLQ-C30
The results of convergent and discriminant validity support our hypotheses in which SEIQoL-DW was expected to correlate moderately to high with measures of global QoL , life satisfaction and mental health and weakly with measures of functional status and health .
Conclusion The SEIQoL-DW appears to be a feasible and valid instrument .
The lack of association between the Index score and health , functional status , demographic and clinical parameters may be explained by the instrument ’s focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life , despite having health problems .
Purpose To review published studies regarding the use , feasibility and psychometric performance of the schedule for the evaluation of individual quality of life — direct weighting ( SEIQoL-DW ) in clinical research .