title: Response shift masks the treatment impact on patient reported outcomes (PROs): the example of individual quality of life in edentulous patients Life quality vs the 'quality of life': assumptions underlying prospective quality of life instruments in health care planning. Comparison of two modes of administration of a personalized quality of life scale in a longitudinal study of total hip arthroplasty. Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. Determinants of Health-Related Quality of Life in Long-Term Survivors of Hodgkin's Lymphoma Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument. Individual quality of life in long-term survivors of Hodgkin's lymphoma – a comparative study Individual quality of life in patients undergoing hip replacement A New Approach to the Measurement of Quality of Life: The Patient‐Generated Index
abstract: Background Quality of life ( QoL ) is now established as an important outcome for evaluating the impact of disease , and for assessing the efficacy of treatments . However , individuals change with time and the basis on which they make a QoL judgement may also change , a phenomenon increasingly referred to as response shift . Here , the individual may change his or her internal st and ards , values , and /or conceptualization on the target construct as a result of external factors such as a treatment or a change in health status . This has important implication s for assessing the effects of treatments as a change in QoL may reflect a response shift , a treatment effect , or a complex combination of both . In this study , we used an individualised quality of life ( IQoL ) measure , the SEIQoL  , together with a then-test to determine whether response shift would influence the measurement of treatment efficacy in edentulous patients . Methods Data are reported here for the first phase of a r and omised controlled clinical trial design ed to assess the impact , on IQoL , of implant supported dentures compared with high quality conventional dentures .  IQoL was measured using the  SEIQoL-DW  in 117 patients ( mean age 64.8 ; 32 % male ) at baseline ( T1 ) and 3 months ( T2 ) after receiving high quality conventional dentures . The work was carried out in dental teaching hospitals in Dublin and Belfast . Results Unadjusted SEIQoL index scores revealed no significant impact of treatment at three months ( baseline : 75.0 ; 3 months : 73.2 , p = .33 , n.s . ) . However , the then-test at 3 months revealed that patients retrospectively rated their baseline IQoL as significantly lower ( P < .001 ) than they had rated it at the time ( then-test baseline : 69.2 ) . Comparison of the 3 month scores with this readjusted baseline indicated a significant treatment effect ( then-test baseline : 69.2 ; 3 months : 73.2 , p = 0.016 ) . 81 % of patients nominated at least one different IQoL domain at 3 months . Conclusion The positive impact of denture treatment for edentulous patients on IQoL was seen only when response shifts were taken into consideration . The nature of the response shifts was highly complex but the data indicated a degree of re-conceptualisation and reprioritisation . Assessment of the impact of treatments using patient-generated reports must take account of the adaptive nature of patients Quality of  Life is a broad construct used in health planning , health economics , and medical decision-making . It is also a term that has a long currency in social and sociological literature s. This paper considers the assumptions underlying prospect i ve QL instruments in an historical and contemporary context . It argues that as a tool in health planning and in clinical decision making life quality as a measurement has its origins in the early eugenics literature and the social policies that derived from it in first North America , the primary focus of this paper , and later in Europe . Reference to narrative and social literature s , as well as those involving coping and adaptation , are then used to critique the assumptions underlying this class of QL instruments . It concludes that to the degree now current prospect i ve instruments reflect a purely physical perspective of " disease burden " irrespective of social conditions they create a context that works against life quality , and in some cases , the continuance of persons with physical differences UNLABELLED  Quality of life  scales are being increasingly used to evaluate patients . The earliest scales were st and ardized question naire that did not necessarily provide an optimal evaluation of the quality of life of each individual patient . A number of personalized scales are now available , including the SEIQoL , in which the patients nominate the five quality of life areas most important to them . The SEIQoL has been vali date d. We tested the SEIQoL in patients treated by total hip arthroplasty , a procedure that is expected to improve quality of life . OBJECTIVE To compare two methods of administration of the SEIQoL several months after total hip arthroplasty . METHODS The SEIQoL was administered before and after the arthroplasty . During the postoperative test session , the SEIQoL was administered twice , once using the items nominated preoperatively and once after allowing the patient to repeat the nomination procedure . RESULTS With both methods , significant improvements in quality of life were demonstrated ( P < 0.05 ) . There was no significant difference between the two methods . CONCLUSION Changing the items of the SEIQoL during prospect i ve studies does not modify the overall quality of life score . Keeping the same items throughout the study is nevertheless warranted 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 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 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 aim ed to use an individual approach in evaluating QoL in long-term survivors of Hodgkin 's lymphoma ( HL ) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting ( SEIQoL-DW ) . Adult long-term survivors from HL ( n = 121 ) were compared with a r and omly selected sample of the general population in Stockholm ( n = 236 ) . The results showed that the most commonly nominated areas ( > 50 % of patients and controls ) important in life were family , personal health , work and relations to other people . The HL survivors mentioned leisure and finances less frequently than the controls . However , neither the current status in the different areas nor the QoL index score differed between survivors and controls . Thoughts and worries around disease , fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL . Sixty-six percent of the survivors reported a change in their view of life and of themselves . Demographic and disease characteristics did not influence the ratings of the chosen areas . In conclusion , long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment , as measured with SEIQoL-DW . The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation 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 Quality of life has been defined as “ the extent to which our hopes and ambitions are matched by experience . ” To improve a patient 's quality of life through medical care would be to “ narrow the gap between a patient 's hopes and expectations and what actually happens . ” Using the above definition as a conceptual basis , we produced a self-administered , Patient-Generated Index ( PGI ) of quality of life .  The PGI was completed by 359 patients presenting with low back pain . The validity of the measure was assessed by correlating patients ' PGI scores with a well-vali date d health profile , the Short-Form 36-item Health Survey ( SF-36 ) , and with their scores on a clinical back pain question naire . Stepwise multiple regression was then used to model the relationship between the PGI score and the SF-36 . Patients ' PGI scores showed a high correlation with SF-36 scales measuring pain , social functioning , and role limitations attributable to physical problems , and with the clinical question naire . Together with whether a person was retired or not , these health variables were able to explain 25 % of the variance in PGI scores . Patient generated index scores were significantly lower in patients referred to hospital compared with those managed solely in general practice and tended to reflect the general practitioner 's assessment of symptom severity . We conclude that it is possible to construct a question naire that quantifies the effect of a medical condition on patients ' quality of life in a way that has meaning and relevance in the context of their daily lives . The PGI has considerable potential for routine use in a wide range of clinical conditions for which the measurement of outcome has hitherto proved very difficult
target: 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 .
background: 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 .