Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument. Individual versus standard quality of life assessment in a phase II clinical trial in mesothelioma patients: feasibility and responsiveness to clinical changes. The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome Individual quality of life in long-term survivors of Hodgkin's lymphoma – a comparative study Pharmaceutical intervention in the care of cystic fibrosis patients. The feasibility of a single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease Determinants of Health-Related Quality of Life in Long-Term Survivors of Hodgkin's Lymphoma A pilot cluster randomized controlled trial of structured goal-setting following stroke
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 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 BACKGROUND In patients with malignant pleural mesothelioma undergoing a multimodality therapy , treatment toxicity may outweigh the benefit of progression-free survival . The subjective experience across different treatment phases is an important clinical outcome . This study compares a st and ard with an individual quality of life ( QoL ) measure used in a multi-center phase II trial . PATIENTS AND METHODS Sixty-one patients with stage I-III technically operable pleural mesothelioma were treated with preoperative chemotherapy , followed by pleuropneumonectomy and subsequent radiotherapy .  QoL was assessed at baseline , at day 1 of cycle 3 , and 1 , 3 and 6 months post-surgery by using the  Rotterdam Symptom Checklist  ( RSCL ) and the Schedule for the Evaluation of Quality of Life-Direct Weighting  ( SEIQoL-DW ) , a measure that is based on five individually nominated and weighted QoL-domains . RESULTS Completion rates were 98 % ( RSCL ) and 92 % ( SEIQoL ) at baseline and 98%/89 % at cycle 3 , respectively . Of the operated patients ( N=45 ) RSCL and SEIQoL were available from 86%/72 % , 93%/74 % , and 94%/76 % at months 1 , 3 , and 6 post-surgery . Average assessment time for the SEIQoL was 24min compared to 8min needed for the RSCL . Median changes from baseline indicate that both RSCL QoL overall score and SEIQoL index remained stable during chemotherapy with a clinical ly significant deterioration ( change > or=8 points ) 1 month after surgery ( median change of -66 and -14 for RSCL and SEIQoL , respectively ) . RSCL QoL overall scores improved thereafter , but remained beneath baseline level until 6 months after surgery . SEIQoL scores improved to baseline-level at month 3 after surgery , but worsened again at month 6 . RSCL QoL overall score and SEIQoL index were moderately correlated at baseline ( r=.30 ; p < or=.05 ) and at 6-month follow-up ( r=.42 ; p < or=.05 ) but not at the other time points . CONCLUSION The SEIQoL assessment seems to be feasible within a phase II clinical trial , but may require more effort from staff . More distinctive QoL changes in accordance with clinical changes were measured with the RSCL . Our findings suggest that the two measures are not interchangeable : the RSCL is to favor when mainly information related to the course of disease- and treatment is of interest 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 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 In a prospect i ve , r and omised , cross-over study including cystic fibrosis patients with indications for HIVAT ( home intravenous antibiotic treatment ) the prospect of pharmaceutical intervention was investigated . A comparison between the use of disposable infusion devices with antibiotics from the pharmacy and when the patients prepared the drugs themselves was performed . During a first treatment course the patients received either infusion devices during 5 days or reconstituted the drugs themselves during 5 days , or vice versa . During a second treatment course the order was the reversed . Eight patients were included , out of which six completed the original design as a cross-over study , yielding a total of 550 doses of antibiotics . The patients preferred infusion devices from the pharmacy prepared according to GMP ( Good Manufacturing Practice ) as opposed to reconstituting the antibiotics themselves . Points of view presented included no anxiety over the correct dosage of drugs and less disruption of family and social life . In a practical sense , portable devices are more expensive than the preparation of the drugs by the patients themselves . However , when comparing with in-hospital treatment the direct costs for a hospital stay exceed that of the devices . Another part of the study evaluated the quality of life using a modified form of SEIQoL-DW ( Schedule for the Evaluation of Individual Quality of Life - Direct Weighting ) . Twenty patients took part in the study and the overall quality of life scores increased significantly when patients received infusion devices compared to reconstituting the drugs themselves Background The Breathlessness Intervention Service is a novel service for patients with intractable breathlessness regardless of aetiology . It is being evaluated using the Medical Research Council 's framework for the evaluation of complex interventions . This paper describes the feasibility results of Phase II : a single-blinded fast-track pragmatic r and omised controlled trial . Methods A single-blinded fast-track pragmatic r and omised controlled trial was conducted for patients with chronic obstructive pulmonary disease referred to the service . Patients were r and omised to either receive the intervention immediately for an eight-week period , or receive the intervention after an eight-week period on a waiting list during which time they received st and ard care . Outcomes examined included : response rates to the trial ; response rates to the individual question naires and items ; comments relating to the trial functioning made during interviews with patients , carers , referrers and service providers ; and , research er fieldwork notes . Results 16 of the 20 eligible patients agreed to participate in a recruitment visit ( 16/20 ) ; 14 respondents went on to complete a recruitment visit/baseline interview . The majority of those who completed a recruitment visit/baseline interview completed the RCT protocol ( 13/14 ) ; 12 of their carers were recruited and completed the protocol . An unblinding rate of 6/25 respondents ( patients and carers ) was identified . Missing data were minimal and only one patient was lost to follow up . The fast-track trial methodology proved feasible and acceptable . Two of the baseline/ outcome measures proved unsuitable : the WHO performance scale and the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting ( SEIQoL-DW ) . Conclusion This study adds to the evidence that fast-track r and omised controlled trials are feasible and acceptable in evaluations of palliative care interventions for patients with non-malignant conditions . Reasonable response rates and low attrition rates were achieved . Further , with adequate preparation of the research and r and omisation teams , clinicians , and responders , and effective liaison with the clinicians , single-blinding proved possible . Methods were identified to reduce unblinding through careful attention to the type of data collected at unblinded measurement points ; the content of interviews should be carefully considered when design ing blinded-trial protocol s . Trial registration Clinical Trials.gov 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 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 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 .