Schedule For The Evaluation Of Individual Quality Of Life-Direct Weighting Research Articles

The quality of life of older adults acutely admitted to the emergency department: A cross-sectional study.

AimTo investigate perceptions of individual QoL among acutely admitted older adults and explore whether homecare and readmission were associated with QoL.DesignA cross‐sectional study at three Danish Emergency Departments.MethodsSemi‐structured interviews, using the Schedule for the Evaluation of Individual Quality of Life – Direct Weighting (SEIQol‐DW) (range 0–100) with patients ≥65 years, were conducted from August 2018 to July 2019. The differences between patients receiving homecare (yes/no) and readmission (yes/no) were tested using linear regression analyses with bootstrap procedures.ResultsOverall, we included 406 patients, of whom 38% received homecare. The mean SEIQoL‐DW‐score was 76 (SD = 19). The most important areas of individual QoL were Family, Social activities, Health, Everyday life and Leisure activities. Receiving homecare was associated to a significantly lower QoL score: −8 (SE = 2) and a significantly lower score in the categories Family and Health. There was no association between readmission and QoL.

Concordance between the schedule for the evaluation of individual quality of life-direct weighting (SEIQoL-DW) and the EuroQoL-5D (EQ-5D) measures of quality of life outcomes in adults with X-linked hypophosphatemia

BackgroundAccurate measurement of any constructs in clinical studies is of critical importance, especially if the adoption of an intervention relies on detecting a significant treatment effect where one exists. Under Neutral theory, the amount of relevant and irrelevant indicators selected to operationalise the construct contribute equally to the accuracy of the observation. The Neutral or accurate observation is achieved by observing all relevant indicators only. Generic QoL instruments such as EQ-5D are increasingly being accepted as imprecise, especially in rare diseases, based on the relevance of their indicators. QoL is a construct that embodies a patient's subjectivity, individuality, and local circumstances at measurement. SEIQoL-DW is an instrument designed to respect these characteristics of QoL through eliciting indicators or cues directly from the subject along with the proportion of the overall QoL they contribute. EQ-5D and SEIQoL can therefore be considered as being at opposing ends of accuracy in QoL measurement. XLH is a hereditary, progressive, rare disease characterised by phosphate wasting, affecting both children and adults and impacting their QoL. The purpose of this study was to observe if any change in QoL of adult XLH patients were detectable using EQ-5D, SEIQoL eliciting new cues at each visit, and SEIQoL administering baseline cues overall visits (thereby silencing its time-dependency) versus baseline over 12 months. In addition, any association between the three sets of observations was explored.ResultsAll quality of life scores were observed to decrease from baseline by 13.36%, 7.32% and 2.7% based on SEIQoLvisit_cues, SEIQoLbaseline_cues, and EQ-5D assessments, respectively. The decrease in the quality of life scores was only statistically significant (p = 0.037) for SEIQoLvisit_cues. Beyond the baseline visit, the only highly positive and statistically significant pairwise association was between SEIQoLvisit_cues and SEIQoLbaseline_cues at M6 (ρ = 0.782, P value < 0.05) and M9 (ρ = 0.879, P value < 0.05).ConclusionsEQ-5D and SEIQoLbaseline_cues failed to detect the same statistically significant decrease in QoL observed by SEIQoLvisit_cues. Both sets of SEIQoL observations were more closely associated with each other than with EQ-5D. Observing constructs such as QoL in rare diseases benefit from a Neutrality in indicator selection and respecting variation in dominance of various indicators over time.

Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

BackgroundEffective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose.The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice.MethodsIn a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes.ResultsThere was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded.ConclusionsFuture studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

Agreement between the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) interview and a paper-administered adaption

BackgroundThe Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) is a prevalent face-to-face interview method for measuring quality of life by integrating respondent-generated dimensions. To apply this method in clinical trials, a paper-administered alternative would be of interest. Therefore, our study aimed to analyze the agreement between the SEIQoL-DW and a paper questionnaire version (SEIQoL-PF/G).MethodsIn a crossover design, both measures were completed in a random sequence. 104 patients at a heart surgery hospital in Germany were randomly assigned to receive either the SEIQoL-DW or the SEIQoL-PF/G as the first measurement in the sequence. Patients were approached on their earliest stable day after surgery. The average time between both measurements was 1 day (mean 1.3; SD 0.8).Agreement regarding the indices, ratings, and weightings of nominated life areas (cues) was explored using Bland-Altman plots with 95% limits of agreement (LoA). Agreement of the SEIQoL indices was defined as acceptable if the LoA did not exceed a threshold of 10 scale points. Data from n = 99 patients were included in the agreement analysis.ResultsBoth measures led to similarly nominated cues. The most frequently nominated cues were “physical health” and “family”.In the Bland-Altman plot, the indices showed a mean of differences of 2 points (95% CI, − 1 to 6). The upper LoA showed a difference of 36 points (95% CI, 30 to 42), and the lower LoA showed a difference of − 31 points (95% CI, − 37 to − 26). Thus, the LoAs and confidence intervals exceeded the predefined threshold. The Bland-Altman plots for the cue levels and cue weights showed similar results.The SEIQoL-PF/G version showed a tendency for equal weighting of cues, while the weighting procedure of the SEIQoL-DW led to greater variability.ConclusionsFor cardiac surgery patients, use of the current version of the SEIQoL-PF/G as a substitute for the SEIQoL-DW is not recommended.The current questionnaire weighting method seems to be unable to distinguish weighting for different cues. Therefore, the further design of a weighting method without interviewer support as a paper-administered measure of individual quality of life is desirable.

An observational study on quality of life and preferences to sustain life in locked-in state.

ObjectiveThis is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme–Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).MethodsIn this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale–revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory–12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.ResultsThe majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.InterpretationSome patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.

Quality of life in subjects treated with botulinum toxin A for facial wrinkles at return to baseline appearance

Objective: The cosmetic benefit of treatment with botulinum toxin A (BoNT-A) has been associated with an increased quality of life (QoL). This study investigated whether such improvements in QoL were maintained upon return to baseline appearance. Methods: Consecutive subjects receiving incobotulinumtoxinA treatment for facial wrinkles had their QoL assessed using the Schedule for the Evaluation of Individual Quality of Life Direct-Weighting (SEIQoL-DW) tool pre-treatment and once their appearance had returned to baseline. At each visit, subjects identified the five areas of their life of the greatest importance to them (‘cues’), weighted the areas as to their relative importance (cumulative score = 100), and rated their status in each area on a visual scale (from 0–100). The SEIQoL-DW index score was calculated as the sum of the weighted scores for each cue. At the return visit, QoL was scored on both the pre-treatment (old) cues and the new cues. Subjects also rated their overall QoL on a visual analogue scale (VAS) from 0–100 and satisfaction with their appearance of a scale of 0–10 at both visits. Results: Fifty subjects (median age 38.5 years; 92% female) with moderate to severe wrinkles to the glabella, forehead or crow's feet had their QoL assessed. Family, work, finance, relationships, and health were the five most frequently identified cues at both visits. Appearance was weighted the second most important cue (after family) when considering those identified by at least 10 subjects. QoL was significantly higher following a return to baseline appearance than pre-treatment according to the overall VAS score (old cues, P = 0.004; new cues, P = 0.0015), but no difference was apparent according to the SEIQoL-DW index (old cues, P = 0.7622; new cues, P = 0.9568). Satisfaction was significantly lower at the return visit than before treatment (P < 0.0001). Conclusion: There may be some longer lasting impact of BoNT-A treatment on QoL beyond the period of cosmetic benefit. The results strengthen the notion that satisfaction is not a surrogate for QoL and that the latter should be more routinely assessed in subjects undergoing this procedure.

Discovering Equations in Relation of Process to the Counseling Process

Each counselor understands counseling freely as all counseling theories are explained without equations. Therefore, there are two kinds of mistakes in counseling. One is counter-transference, the other is a mistake wherein the counselor forces his thought and induces certain thoughts in the client. The counselor assists in aiding the client’s real intentions to be converted to the client’s consciousness from their unconsciousness. It is equal to a process in which the methods rearrange and unify the thoughts from a chaotic state. For example, such methods include the KJ (Kawakida Jiro) method, the SEIQoL-DW (Schedule for the Evaluation of Individual Quality of Life-Direct Weighting) method, dialectics, the process discovering equation. In this report, the counseling process is compared with a process of discovering equations from observed values. In the process of discovering equations, it is important that the curve of equations smoothly continues. On the curve, the contact point and the gradient of the tangent line must not break off. Similarly, it is important that a counselor easily understands a client. Therefore, it is a necessary condition for counseling that the counselor’s and client’s original characters are smoothly patterned and that the communicating method of the counselor must be equal to that of the client. It will be useful for preventing two kinds of mistakes in counseling if counseling can be represented using equations and graphs.

Relation of Chaos equation to the Schedule for the evaluation of individual Quality of Life-direct Weighting Method

The SEIQoL-DW (Schedule for the Evaluation of Individual Quality of Life-Direct Weighting) method may be misused because of lack of confirmation by scientific theory. It is compared with the representative chaos equation. Y (n + 1) = [1 – Y (n)] Y (n) The Z (m) axis is perpendicular to the p and Y (n) axes. Z (m + 1) = [1 – Z (m)] Z (m) From both equations, a three dimensional logistic map is imagined. [Y (n + 1) / Z (m + 1)] = [1 – Y (n)] Y (n) / [1 – Z (m)] Z (m) According to p that changes from 3.0 to 4.0, the numbers of answers in this equation change to 1, 4, 16, localized chaotic state, and proliferated chaotic state. Cue (area), level and weight of the SEIQoL-DW are compared with each group in the localized chaotic state. The erased p is considered as a personal ability. Misuse can be avoided provided that the user understands the relation of chaos theory to the SEIQoL-DW.

Quality of life in palliative care: An analysis of quality-of-life assessment

The principal aim of palliative care is to improve patients' quality of life. This is more complicated than it seems. There is no generally accepted way to assess quality of life. Through an extensive literature research multiple instruments were found. Of these, four were chosen to be examined further (Schedule for the Evaluation of Individual Quality of Life – Direct Weighting (SEIQoL-DW), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire – Core 15 – of Palliative Care (EORTC QLQ-C15-PAL), Rotterdam Symptom Checklist (RSCL), and Palliative Care Outcome Scale (POS)). These were used with patients in a German palliative care ward. Staff and patients were interviewed on their understanding of quality of life and its assessment. The results of literature research, interviews, and application of the instruments were then collated and critically evaluated. It became obvious that a deliberate choice of an instrument has a great impact on practicability and outcome in a clinical setting. The EORTC QLQ-C15-PAL seems particularly useful for (international) studies; it leads to clear and easily comparable results. For routine use in clinical palliative care, however, it seems too impersonal to represent more than a rough idea of patients' actual quality of life. Applying the RSCL, the researcher could gain a basic overview of symptoms and psychological condition of his patients – even though it seems too rigid to allow a deeper insight in quality of life. The POS offers additional insight via an open question and a staff questionnaire. This could provide particularly helpful information for clinical routine – provided patients can cope with its more complex format. The SEIQoL-DW seems to be best suited for use in a clinical situation even though its use can be challenging for both researcher and patient. Assessment requires both parties to interact directly, which seems to have a beneficial impact on relationship and communication. It is the most flexible assessment instrument of those analysed here and therefore seems to be best suited to investigate such a complex matter as quality of life.

The relationship between building design and residents’ quality of life in extra care housing schemes

Well-designed housing is recognised as being an important factor in promoting a good quality of life. Specialised housing models incorporating care services, such as extra care housing (ECH) schemes are seen as enabling older people to maintain a good quality of life despite increasing health problems that can accompany ageing. Despite the variation in ECH building design little is known about the impact of ECH building design on the quality of life of building users. The evaluation of older people’s living environments (EVOLVE) study collected cross-sectional data on building design and quality of life in 23 ECH schemes in England, UK. Residents’ quality of life was assessed using the schedule for the evaluation of individual quality of life-direct weighting (SEIQoL-DW) and on the four domains of control, autonomy, self-realisation and pleasure on the CASP-19. Building design was measured on 12 user-related domains by means of a new tool; the EVOLVE tool. Using multilevel linear regression, significant associations were found between several aspects of building design and quality of life. Furthermore, there was evidence that the relationship between building design and quality of life was partly mediated by the dependency of participants and scheme size (number of living units). Our findings suggest that good quality building design in ECH can support the quality of life of residents, but that designing features that support the needs of both relatively independent and frail users is problematic, with the needs of highly dependent users not currently supported as well as could be hoped by ECH schemes.

Comparing two versions of the Schedule for Evaluation of Individual Quality of Life in patients with advanced cancer

Background. The aim was to compare two individualized patient reported outcomes or the Schedule for the Evaluation of Individual Quality of Life – Direct Weighting (SEIQoL-DW) measuring quality of life in general, and the disease-related version (SEIQoL-DR) measuring quality of life related to disease. Both instruments have been used in clinical practice settings within oncology. The instruments were compared with regard to feasibility, the areas nominated by patients as important and patients’ ratings of how they were doing in these areas (Index scores). Material and methods. The study included 40 patients with gastrointestinal cancer. All patients completed both versions of the instrument on a touch screen computer in relation to a medical consultation. Firstly, the participants were invited to nominate the five domains she/he currently considered to be most important in life. Secondly, they were asked to rate how they were doing in each of these domains. Finally, they were asked to quantify the relative importance of each area. Cohen's effect sizes were calculated to illuminate the clinical importance of mean value differences. Results. Both instruments took less than ten minutes to complete and the procedure was considered feasible by both patients and interviewers. The proportion of patients nominating the same areas in the two versions did not differ, however, the SEIQoL-DW Index score was significantly higher than the corresponding score for the SEIQoL-DR. The detected difference in the mean score measured by effect size was medium. Conclusion. The magnitude of the effect size of the difference in Index score imply that the two versions tap into different constructs, i.e. quality of life (QoL) versus health-related QoL (HRQL), supporting the construct validity of the two versions of the instrument. The SEIQoL-DW and the SEIQoL-DR should be considered as complementary rather than interchangeable when used in patients with cancer.

Long‐term survivors of childhood cancer report quality of life and health status in parity with a comparison group

There is a need for more knowledge about how survivors of childhood cancer perceive their lives and what influence current health status has on their quality of life. The purpose was to describe this among a group of long-term survivors and among a comparison group. Telephone interviews were performed with a cohort of 246 long-term survivors and 296 randomly selected from the general population using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). The participants nominated the areas they considered to be most important in life and rated the current status of each area on a seven-point category scale. An overall individual index score was calculated as a measure of quality of life. Self-reported health status was assessed using the Short Form Health Survey (SF-36). Long-term survivors rated their overall quality of life and self-reported health status almost in parity with the comparison group. In both groups, family life, relations to other people, work and career, interests and leisure activities were the areas most frequently reported to influence quality of life. The survivors only differed from the comparison group on one of eight SF-36 scales reflecting problems with daily activities owing to physical health. Health status was not shown to have a major impact on overall quality of life, indicating that health and quality of life should be evaluated distinctively as different constructs. This should be taken in consideration in clinical care of children with childhood cancer and long-term survivors.

Comparison of an individual systematic interview method and the oral health impact profile. Responsiveness and ability of describing treatment effect of oral rehabilitation

The Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW) has shown potential for generating information and measuring Oral Health-Related Quality of Life (OHRQoL) in oral rehabilitation. The Oral Health Impact Profile-49 (OHIP-49) has been widely used in population studies. The purpose of this study was to compare the responsiveness and ability of the SEIQoL-DW and the OHIP-49 to qualitatively describe the change following oral rehabilitation. Twenty-two participants treated with fixed or removable prosthesis were interviewed before and after treatment using the SEIQoL-DW and the OHIP-49 questionnaire. The participants rated the subjective perception of change and answered two global oral rating questions. A clinical examination was performed to identify dental status variables. No significant difference was found between pre- and post-treatment SEIQoL-DW scores. A significant difference between pre- and post-treatment OHIP-49 scores was found. The SEIQoL-DW and OHIP-49 change scores was significantly correlated. The dental status variables such as number of teeth, number of teeth replaced, number of occluding units, type of treatment, extractions and removable dental prosthesis (RDP) before treatment did not influence the change scores. The effect size was low for the SEIQoL-DW (0.15) and moderate for the OHIP-49 (0.60). Improvement in subjective perception of change was related to both improvement and deterioration in change scores. More aspects were mentioned in the SEIQoL-DW compared to the OHIP-49. Based on the change in overall score and effect size, the SEIQoL-DW showed a weaker responsiveness than the OHIP-49. The SEIQoL-DW, however, described the change more detailed than the OHIP-49.

The feasibility of a single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease

BackgroundThe 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 randomised controlled trial.MethodsA single-blinded fast-track pragmatic randomised controlled trial was conducted for patients with chronic obstructive pulmonary disease referred to the service. Patients were randomised 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 standard care. Outcomes examined included: response rates to the trial; response rates to the individual questionnaires and items; comments relating to the trial functioning made during interviews with patients, carers, referrers and service providers; and, researcher fieldwork notes.Results16 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).ConclusionThis study adds to the evidence that fast-track randomised 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 randomisation 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 designing blinded-trial protocols.Trial registrationClinical Trials.gov NCT00711438

The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW

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. Systematic literature review. Studies using the SEIQoL-DW were included if they were published in English and employed a quantitative design. A pre-defined checklist was used to analyse the reported results. Thirty-nine relevant articles were identified. The SEIQoL-DW has been included in studies relating to a variety of populations, including those who are severely ill. 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. 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. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended.

Individual Quality of Life in Chronic Kidney Disease

Novel individualized quality-of-life (IQOL) measures permit patients with chronic kidney disease (CKD) to nominate unique areas of their lives that contribute to their well-being. This study assessed for differences in domains nominated by patients with CKD. We also examined the strength of association between (1) multidimensional health-related quality-of-life measures and IQOL and (2) psychosocial factors and IQOL. We performed a cross-sectional study of 151 patients who were undergoing peritoneal dialysis or hemodialysis or had stages 4 through 5 CKD. Patients completed the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQOL-DW), an instrument that assesses IQOL on the basis of patient-identified domains. Patients also completed health-related quality-of-life and psychosocial health measures. Patients with CKD nominated many domains on the SEIQOL-DW, but family and health were the most common for all groups. Kidney disease was listed more frequently by peritoneal dialysis compared with hemodialysis patients or patients with CKD (31 versus 14 versus 5%, respectively). There were no significant differences in SEIQOL-DW scores between subgroups. SEIQOL-DW scores correlated with mental well-being and inversely correlated with chronic stress and depression. Patients with advanced CKD demonstrate compromised quality-of-life scores comparable to dialysis patients. IQOL measures provide unique information that may help guide interventions that are better tailored to address patients' concerns about their well-being. These findings also suggest that renal clinics should have staff available to address psychosocial aspects of patient well-being.

Positive and negative consequences of childhood cancer influencing the lives of young adults

The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.

Measuring the individual quality of life of patients with prostate cancer

Prostate cancer can have diverse effects on patients' quality of life (QoL). Standard QoL questionnaires do not address all of the concerns expressed by such patients. The primary purpose of this study was to identify those issues with the greatest influence on the QoL of patients with prostate cancer. A secondary aim was to compare the performance of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) semi-structured interview with the Functional Assessment of Cancer Therapy-Prostate questionnaire (FACT-P). A mixed population of patients with prostate cancer (including those with localized and metastatic disease) completed the SEIQoL-DW and the FACT-P. The SEIQoL-DW was satisfactorily completed by 180 patients, including 93 patients with metastatic disease. Patients identified 144 separate QoL concerns, and these were then independently grouped by three of the authors into 13 distinct themes. The most frequently identified themes were 'leisure and hobbies', 'family' and 'health'. The themes that patients considered to be the most important were 'partner/spouse', 'family' and 'health'. Patients were most satisfied with their QoL in the domains of 'family', 'partner/spouse' and 'friends'. They were least satisfied with 'sexuality', 'mobility' and 'psychological factors'. Patients with metastatic disease rated their QoL significantly (P<0.0001) lower than other patients using the FACT-P, but not using the SEIQoL-DW (P=0.07). Patients with prostate cancer identified numerous QoL concerns that are not included (or are underrepresented) in standard health-related QoL questionnaires such as the FACT-P. Health-related QoL questionnaires may underestimate the QoL of patients with metastatic disease.

Quality of life in palliative care: being at ease in the here and now

Quality of Life (QoL) is an important issue for users of hospice services and may be assessed in a quantitative way. This study set out to evaluate the effectiveness of the Schedule for the Evaluation of Individual Quality of Life--Direct Weighting (SEIQoL-DW). A sequential mixed methods design was used to examine both quantitative and qualitative factors relating to quality of life. Five participants were recruited from an inpatient specialist palliative care (hospice) unit in East Anglia. Each participant completed the SEIQoL-DW followed by unstructured interviews, which were analysed using Giorgi's (1985) psychological phenomenological method. It was found that SEIQoL-DW provided an opening or 'window' onto participants' QoL as they travelled from their past to their future. Themes emerging from the unstructured interviews suggest that QoL was about 'being at ease' in the 'here and now' and was influenced by past experiences and future expectations. Existential and spiritual issues, which were not all captured by the SEIQoL-DW, were of more importance than physical symptoms. This needs to be taken into account when caring for those nearing the end of their lives and particularly when using medications that have an adverse effect on mental acuity.

Quality of life and its correlates in octogenarians. Use of the SEIQoL-DW in Wave 5 of the Aberdeen Birth Cohort 1921 Study (ABC1921)

The direct-weighted Schedule for the Evaluation of Individual Quality of Life, Direct Weighting (SEIQoL-DW) is an individualised measure of QoL that has been little used in very elderly people. We administered SEIQoL-DW during Wave 5 of the Aberdeen Birth Cohort 1921 Study (ABC1921) and sought statistical correlations with other variables in the data set. ABC1921 participants had been IQ-tested in 1932 at age 11. Since 1997, data about cognition, mental/physical function, personality, health, and socioeconomic status have been gathered in five waves of investigations. Ninety-six out of 98 individuals, mean age 82.2, completed the SEIQoL-DW. Health, family, relationships, finances and social pastimes were the commonest cues nominated, but age/gender differences existed. The mean SEIQoL-DW score (74.0) was significantly lower than in an approximately 60% sample from Wave 3, the fall being greater in men. Variables statistically associated with Wave 5 SEIQoL-DW usually reflected current rather than past status [including Short-Form 36 Health Survey (SF-36) components and depression], although there were weaker correlations with years of education, housing in childhood, conscientiousness, and IQ in 1998. SEIQoL-DW proved feasible and acceptable in community-dwelling octogenarians. Recent (i.e. statelike) rather than early or long-standing (i.e. traitlike) influences appeared to have the greater effect on QoL.