Schedule For The Evaluation Of Individual Quality Of Life Research Articles

PCR71 Using Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and Computer Adapted Testing (CAT) in Current Practices

PCR71 Using Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and Computer Adapted Testing (CAT) in Current Practices

Comparison of two questionnaires (PDQ-39 and SEIQoL) for assessment of the quality of life in idiopathic Parkinson’s disease

Parkinson’s disease is a neurodegenerative disease of the central nervous system that begins insidiously and progresses over time with a loss of nerve cells in certain brain regions. People with chronic diseases often experience a change in their quality of life. For patients, relatives, and the whole community, a reduced quality of life can pose a significant burden. Therefore, it is imperative to reduce socioeconomic costs to preserve high health quality in patients with neurodegenerative disorders. Parkinson’s disease can cause people to have difficulty performing daily activities such as working or shopping. It is not uncommon for social interaction to be impaired, as patients sometimes struggle to participate in social life due to their symptomatology. The quality of life of Parkinson’s disease patients can be measured in different ways. A distinction can be made between Health-related Quality of Life and Individualised Quality of Life. Several questionnaires and screening tools are investigating the Quality of Life in patients with Parkinson’s disease. However, their validity and practicability are often not extensively analyzed. In this paper, we will investigate whether the two questionnaires, “The Parkinson’s Disease Questionnaire (PDQ-39)” and “Schedule for the Evaluation of Individual Quality of Life (SEIQoL)”, measure the same quality of life in PD patients. The two questionnaires do not reach the same results, although they both measure the construct “Quality of Life” and should be used complementary to gain deeper insight into patients’ real-life problems.

Scoping Appropriate Quality of Life Dimensions for the Development of a Meaningful Quality of Life Tool for PCOS. The “HERAQoL-P”

Background: Polycystic Ovary Syndrome (PCOS) is a common endocrine condition in women, with a range of symptoms related to problems with fertility, weight gain, mental health and sleep, and is not a stable condition over the life course. Women with PCOS have different experiences of Quality of Life (QoL) depending on their age, ethnicity, socio economic status, severity and phenotype. QoL is an important health outcome, yet measures include predefined items, that may be unimportant to individuals. Existing PCOS QoL measures may not capture the full physical, emotional, and social impact of PCOS, all of which need to be addressed within person-centred care in order to achieve the best possible health outcomes in both the short and long term. Aim: We aim to scope and understand priorities for quality of life (QoL) dimensions from women with PCOS throughout life, to provide a conceptual framework for the creation of a meaningful, scientifically validated quality of life tool in the future. Method: Based on the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) questionnaire, we are surveying 200 women and interviewing 20-30 women diagnosed with PCOS about aspects of life important for their quality of life. Questions in the interview include the impact of this condition on physical, mental and emotional health, and understand whether PCOS affects women differently according to their profile of symptoms and background. Results: This work provides the basis for developing a new QoL tool, reflecting the diverse PCOS features with the greatest impact, enabling better evaluation of Patient Reported Outcomes. Conclusion: A high-quality QoL questionnaire could highlight women’s specific priorities, and then measure whether their healthcare addresses such priorities. We will then create the HERAQol-P, with extensive potential to have impact, in both research and clinical care, adding to the evidence base for PCOS.

Exploring the Innate Human Potential for Positive Adaptation in the Face of Impending Mortality: Is there a Response Shift in Subjective Quality of Life over Time in a Group of Patients with Lung Cancer Receiving Palliative Treatment?

Traditionally changes in quality of life (QoL) are assessed using self report questionnaires. They rely on the assumption that the patient’s point of reference does not change over time. However in reality patients with chronic and life threatening illness appear to undergo an adaptation to their disease or “Response Shift” (RS). In this study of a population of patients with advanced lung cancer receiving palliative chemotherapy we examine for a RS in subjective QoL. Methods: 33 patients completed the Schedule for the Evaluation of Individual Quality of Life (SEIQoL), SEIQOL–DW and the EORTC-QLQ C-30 at diagnosis. At 1, 3 and 6 months patients completed SEIQoL/ SEIQOL–DW and retrospectively re-assessed their baseline QoL (the “then” test) using SEIQoL-DW. Results: The initial mean SEIQoL-DW score was 67.48 changing to 66.71 at one month. Retrospectively, patients reassessed their initial mean SEIQoL-DW score as 59.61, suggesting a RS of 7.87 (p ≤0.0001) and an actual improvement in QoL of 7.1 points. At three months the mean SEIQoL-DW score was 65.13; retrospectively patients rated their QoL at one month much lower, mean SEIQoL-DW then – test’ score was 59.92, suggesting a RS of 6.79 (p = 0.0013). At six months patients’ mean SEIQoL-DW score was 61.86. Again, when retrospectively rating their QoL at three months they rated it lower, mean SEIQoL-DW score of 58.84, indicating a ‘positive’ RS of 6.28 (p = 0.0007). Conclusion: Traditional pre/post SEIQOL–DW scores show little change in subjective QOL however by incorporating the ‘then-test’ we can see that patients have undergone a RS and a significant positive change in subjective QOL. By explicitly measuring RS it may be possible to assess changes in QoL with greater validity and sensitivity.

A review of the application, feasibility, and the psychometric properties of the individualized measures in cancer.

To identify from the published literature the feasibility and the application of the individualized measures [Patient Generated Index (PGI), Schedule for the Evaluation of Individual Quality of Life (SEIQOL), and the short form of it (the direct weighting SEIQOL-DW)] in the context of cancer and to summarize the evidence on the psychometric properties of these measures. Ovid Medline, PubMed, Embase, and CINAHL were searched up to April 2016. All studies were included if they reported information about the psychometric properties of the individualized measures and included patients diagnosed with any type of cancer at any age. Effect size (ES) was calculated to test for the responsiveness. Fifty-four full articles were reviewed. Full-text assessment of these articles resulted in 27 eligible studies that were included in our analysis. The majority of the studies (81%) reported data on the SEIQOL-DW, and only 15% on the PGI. Fourteen areas of quality-of-life (QOL) concerns were identified by patients using the PGI with the top 4 being family (90%), health (85%), finance (85%), and work (80%). At the global level, the correlation between the individualized and standard measures ranged from 0.45 to 0.49 and, at the symptom level, from 0.26 to 0.51. The ES of the individualized measures was high (ranged from 0.98 to 1.0) in the studies that expected high positive change compared to standard QOL measures (ES=0.1). Individualized measures are feasible and acceptable among people with cancer and could easily be incorporated clinically and used in a research context. Individualized measures are sensitive to change and cover a wide range of patients QOL concerns in comparison with standard measures.

Head and neck cancer patients’ perceptions of quality of life and how it is affected by the disease and enteral tube feeding during treatment

Aim. To explore individual quality of life in patients with head and neck cancer from diagnosis up to 3 months after termination of radiotherapy. Research questions: 1) Which areas in life are important to quality of life, and which are influenced by the disease and by having oral or enteral nutrition; and 2) Which areas in life are influenced by having a nasogastric feeding tube (NGT) or a percutaneous endoscopic gastrostomy (PEG) tube?Material and methods. Data were collected in 36 patients. Semi-structured interviews were conducted using an extended version of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and analysed with content analysis.Results. Negative and positive experiences of quality of life in general were about relation to family, own health, and leisure activities. Negative impacts on physical, psychological, existential and social problems, but also positive experiences are described by the patients related to the disease. More than half expressed eating-related problems. Enteral nutrition entailed negative and positive experiences, and no greater variations were described by the patients with NGT or PEG tube. Overall, there were interindividual variations.Conclusions. The patients’ perception of general or disease-related quality of life was not affected by whether they had enteral nutrition or not. From the patients’ perspective neither of the two feeding tubes (NGT or PEG) was clearly in favour. We suggest that more studies are needed on how the choice of enteral feeding tube can be evidence-based, and incorporating the patients’ perspective.

Measuring individual quality of life in patients receiving radiation therapy: the SEIQoL-Questionnaire

Quality of life (QoL) is one of the most important outcomes in cancer care. Although a number of instruments to measure health-related QoL (HRQoL) exist, there are few suitable instruments to measure individual QoL. The best established instrument is the Schedule for the Evaluation of Individual Quality of Life (SEIQoL). The disadvantage of this questionnaire is its use of semi-structured interviews, which are very time-consuming. The purpose of our study was to transform the SEIQoL into an economical instrument that can be used in clinical trials with large samples. We developed the SEIQoL-Questionnaire (SEIQoL-Q) on the basis of the SEIQoL-Direct Weighting (SEIQoL-DW) by transforming the interview guide into a written questionnaire. Patients (N=1,108) in all three phases of radiation treatment (first consultation, ongoing irradiation, and aftercare) were asked to complete the SEIQoL-Q and the European Organization for Research and Treatment of Cancer QLQ-C30. While the average HRQoL measured by the QLQ-C30 was 55.6, the average SEIQoL-Q index was 59.6. The most important life domain was "physical health," followed by "emotional well-being" and "family." Patients attributed the highest level of satisfaction to "home/housing," followed by "family" and "partnership." Male patients were shown to have a significantly better QoL than females. The SEIQoL-Q index correlates moderately with the QLQ-C30 functioning scale "global quality of life" [r=.42 (p<.001)]. According to our findings, the SEIQoL-Q appears to be a feasible and economical instrument for use in quantitative research among cancer patients in different stages of their disease.

Mandibular implant supported complete dentures improved quality of life

Randomised controlled trial. Patients from hospital waiting lists who had been edentulous for at least two years and required replacement of conventional dentures were recruited. Baseline quality of life and satisfaction measures were taken and all patients were provided with new conventional complete dentures (CCDs) that they wore for three months, at which point they were reassessed using the same measures. Patients were then randomly assigned either to continue with CCDs (control) or to have implant-retained overdentures (IODs) made (test group). The control group was assessed after a further three months (six months after receiving CCDs). The test group was assessed three months after receiving IODs. The outcome measures used were the Oral Health Impact Profile-49 (OHIP-49) Denture Satisfaction Questionnaire (DSQ) and the Schedule for the Evaluation of Individual Quality of Life (SEIQoL). Three months after receiving CCDs patients reported significant improvements in satisfaction and quality of life (P < 0.05). However no further improvements were seen in the control group at six months for any measure. Following placement of IODs the test groups had significant additional improvements in the functional limitation, physical pain, psychological discomfort, physical disability, social disability, psychological disability and handicap scales of the OHIP and on 10 of the 11 scales of the Denture Satisfaction Questionnaire (P < 0.05, ANOVA). The findings show that, controlling for expectancy bias and variability in baseline levels, IODs significantly increase patient satisfaction, dental function and quality of life over and above those achieved with good quality CCDs.

The importance of an idiographic approach for the severe chronic disorders—the case of the amyotrophic lateral sclerosis patient

EDITORIAL article Front. Psychol., 19 November 2012Sec. Psychology for Clinical Settings Volume 3 - 2012 | https://doi.org/10.3389/fpsyg.2012.00509

Quality of Life and Burden of Spouses of Alzheimer Disease Patients

The objective of the study was to explore, in a sample of spouses of mild-to-moderate Alzheimer disease patients, predictors of quality of life (QoL) by rating QoL and burden. The authors assessed 97 spouses in a cross-sectional study with the Schedule for the Evaluation of Individual Quality of Life (SEIQoL), Self-Rated Burden scale (SRB), self-perceived stress scale (EDIZ; Ervaren Druk door Informele Zorg/Self-Perceived Pressure from Informal Care), and Zarit Burden Interview (ZBI). Patient cognition was rated with the Mini-Mental State Examination (MMSE). Factors best predicting QoL were analyzed with multiple regression analysis. Eighty-seven (53% male, mean 72 y) fulfilled the SEIQoL internal reliability criteria, and had a mean SEIQoL score of 68.6+/-14.8. Most important QoL domains were condition of patient (31%) and marriage (26%). Caregiver burden scores on SRB, Ervaren Druk door Informele, Zorg, and ZBI were 44.1+/-23.5 (n=67), 4.9+/-2.2 (n=53), and 13.1+/-6.2 (n=53), respectively. Mean patient MMSE score (0 to 30) was 20.3+/-4.2. Spouses experienced lower QoL than Alzheimer disease patients and healthy elderly (historical controls), and perceived moderate levels of burden. Patient cognition is a significant predictor of caregiver QoL. Burden, measured by ZBI, is significantly negatively correlated with SEIQoL. The results underline the importance of implementing health services known to improve QoL and alleviate burden, and to explore new effective interventions.

Individual quality of life: adaptive conjoint analysis as an alternative for direct weighting?

In the schedule for the evaluation of individual quality of life (SEIQoL) the weights for five individualized quality of life domains have been derived by judgment analysis and direct weighting (DW). We studied the feasibility and validity of adaptive conjoint analysis (ACA) as an alternative method to derive weights in 27 cancer patients and 20 patients with rheumatoid arthritis. Further, we assessed the convergence between direct weights and weights derived by ACA, and their correlation with global quality-of-life scores. All respondents finished the ACA task, but one in five respondents were upset about the ACA task. Further, the task was vulnerable to judgment ‘errors’, such as inconsistent answers. The agreement between the two weights was low. Both weighted index scores were strongly correlated to the unweighted index score. The relationships between the index score and scores on a visual analogue scale for global individual quality of life and global quality of life were similar whether or not the index score was calculated with DW weights, with ACA weights, or without using weights. We conclude that, because weights did not improve the correlation between the index score and global quality of life scores, it seems sufficient to use the unweighted index score as a measure for global individual quality of life.

The SEIQoL and functional status: how do they relate?

Over recent years, an emphasis has emerged in the UK and international policy documents, over the involvement of people in the delivery of health care. However, evaluations of health services still largely rest on outcome measures that reflect professional concerns. As new health services are being developed, new patient-centred outcome measures are needed to evaluate them. This paper aims at exploring the possibility of individual quality of life as an outcome measure for health services. As a first step, it aims to elucidate the relationship of functional outcome measures to the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) in groups of people whose age or medical diagnosis serve as the basis for health service design. Its objectives are to study the relation of SEIQoL scores and life areas to functional status in an older population and in a group of people with chronic obstructive pulmonary disease (COPD). Older people selected their health most frequently as one of the most important areas in their life (9.9%, vs. 8.6% for people with COPD) and were more satisfied with it (U = 2,512, p = 0.007). People's health status did not impact on the way they defined their quality of life, but on their level of satisfaction with discrete life areas. The weights attributed to health were significantly negatively correlated to people's overall quality of life score in the overall sample (rho = -0.34, p < 0.001). In the light of recent national and international policy documents advocating for the development of new, more person-centred health services, our results support the proposition of the authors of SEIQoL, that individual quality of life measures have the potential to bring a significant contribution to the evaluation of health services.

A study compared nine patient-specific indices for musculoskeletal disorders

Background and Objective Patient-specific quality of life indices show great potential, but certain conceptual and methodological concerns have yet to be fully addressed. The present study reviewed nine patient-specific instruments used in musculoskeletal disorders: the Canadian Occupational Performance Measure (COPM), Juvenile Arthritis Quality of life Questionnaire (JAQQ), McMaster–Toronto Arthritis questionnaire (MACTAR), Measure Yourself Medical Outcome Profile (MYMOP), Patient-Specific Index (PASI) for total hip arthroplasty, Problem Elicitation Technique (PET), Patient Generated Index (PGI) of quality of life, Patient-Specific Functional Scale (PSFS), and Schedule for the Evaluation of Individual Quality of Life (SEIQoL). Study Design and Setting Each tool was evaluated for purpose, content validity, face validity, feasibility, psychometric properties, and responsiveness. Results This critical appraisal revealed important differences in terms of the concept underlying these indices, the domains covered, the item-generation techniques and the scoring (response scale, methods) in each scale. The nine indices would generate different responses and likely scores for the same patient, despite the fact that they all include patient-generated items. Conclusion Although the value of these indices in treatment planning and monitoring at an individual level is strong, more studies are needed to improve our understanding of how to interpret the numeric scores of patient-specific indices at both an individual and a group level.

Individualised quality of life after pacing. Does mode matter?

To examine the hypothesis that atrial based pacing improves Quality of Life (QoL) after pacing by undertaking a detailed QoL evaluation that includes an individualised assessment as well as disease specific evaluation. Prospective study of patients randomised to VVI(R) or atrial based pacing modes using the Schedule for the Evaluation of Individual QoL (SEIQoL), the 36-item Medical Outcomes Study Short-Form General Health Survey (SF36), and a modified version of the Karolinska Cardiovascular Symptomatology Questionnaire (KCSQ). Seventy-three patients completed the two-year follow up of the study. Pacing improved SEIQoL scores, cardiovascular symptoms and the physical role limitation, social limitation and mental health domains of SF36 from baseline to one month. Pacing mode had no effect on QoL the major determinants of which were baseline QoL and a history of coronary artery disease. Atrial based pacing does not improve QoL in the two years after pacing when compared with VVI(R) pacing.

Design of an individualised measure of the impact of macular disease on quality of life (the MacDQoL).

The aim of this study was to design an individualised questionnaire to measure the impact of macular disease (MD) on quality of life (QoL). Principles underlying the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) interview method and the Audit of Diabetes-Dependent Quality of Life (ADDQoL) diabetes-specific questionnaire influenced the Macular Disease-Dependent Quality of Life (MacDQoL) design. The MacDQoL specifies domains of QoL that were selected using focus group methodology and refined following a postal pilot study of members of the UK Macular Disease Society (MDS). Respondents rated the impact of MD on each domain and the importance of each domain to their QoL. Mean domain scores from 69 respondents indicated that MD had a negative impact on all the domains of QoL investigated in the measure. There was preliminary evidence of good internal consistency reliability (Cronbach's alpha = 0.93, n = 37). Respondents who were registered partially sighted (P/S) or blind reported poorer QoL than those who were not registered (Kruskal-Wallis: chi2 = 14.03, n = 62, p < 0.001). This evidence suggests that the measure will be sensitive to subgroup differences. The instrument has been further refined following the pilot study. The MacDQoL is being used in clinical trials and psychometric evaluation of the measure will be carried out using trial data. The measure is available for clinical use and has been linguistically validated in 15 other languages.

A Review of Selected Patient-Generated Outcome Measures and Their Application in Clinical Trials

Background Patient-generated outcome measures have been developed in an effort to capture the individualistic nature of health-related quality of life (HRQoL). These measures differ from traditional HRQoL instruments in that they allow patients to individually define HRQoL domains or weights. Nevertheless, application of these measures may be challenging, particularly in a clinical trial setting. Objective The objective of this study was to provide a critical review of the following patient-generated outcome measures: Patient-Generated Index (PGI), Schedule for the Evaluation of Individual Quality of Life (SEIQoL), Repertory Grid, and Asthma Quality of Life Questionnaire (AQLQ). Methods We conducted a systematic literature review of the Medline and Olga databases and the journal Quality of Life Research and consulted experts. We abstracted data from eligible studies on the instruments' content, psychometric properties, and applicability in a clinical trial setting. Results The SEIQoL has shown to be reliable, valid, and responsive, but the PGI has not. Both instruments have poor practicality and have not been used in a clinical trial. The Repertory Grid's psychometric properties have not been well studied. The AQLQ is in part patient-generated and has been used in clinical trials. Nevertheless, the practicality of the individualized section is poor owing to the issue of missing data. All four instruments fail to provide a form of standardization needed for estimating population effects in a clinical trial. Conclusion The applicability of patient-generated outcome measures in a clinical trial setting remains questionable. Patient-generated outcome measures appear to be useful primarily in complementing traditional HRQoL measures, guiding individual patient treatment decisions, and assisting the design of new measures.

Predicting psychological distress in patients with leukaemia and lymphoma

This study examines the relationship between coping style, quality of life (QOL) and psychological distress in a sample of patients with leukaemia and lymphoma. Fifty-one consecutive in-patients, day cases and haematology out-patient attenders entered the study and completed a 10-item self-report questionnaire, the Hospital Anxiety and Depression Scale (HADS), the Mental Adjustment to Cancer Scale (MACS) and the Schedule for the Evaluation of Individual Quality of Life (SEIQOL). Fifty-one percent of patients reached caseness for moderate distress. Fourteen percent of patients reached caseness for severe distress. Twenty-seven percent of patients were identified as having adjusted poorly to their diagnosis having low scores on the Fighting Spirit subscale of the MAC and high scores on the Hopeless/Helpless subscale. There was a significant association between patients who scored highly on the HADS and dissatisfaction with the information provided. Use of a logistic regression model showed that those patients most likely to be suffering from severe psychological distress were those with a worse coping style, measured by MAC. The clinical implications of these findings are discussed.

A theory-based method for the evaluation of individual quality of life: the SEIQoL.

Few reports about methods of evaluating quality of life (QoL) among the thousands published since medical interest in the subject slowly began nearly 40 years ago are based upon theory. This paper, prepared in response to a request to furnish an exception (Meadows KA. Introduction to an Advanced Seminar: Assessing Health-Related Quality of Life. What can the Cognitive Sciences Contribute? Hull University, October 9, 2000) describes the origins of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL). This derives its cognitive aspects from theoretical studies of perception by Egon Brunswik, their extension to Social Judgment Theory (SJT) by Kenneth Hammond and the application of these ideas to QoL by the present authors and their colleagues.

Focus on the Individual

In this review we investigate how assessments of quality of life (QoL) can be used in daily clinical practice. The focus is on individualized QoL assessments, but computerized-adaptive testing and interpretation of QoL scores are also considered. Quality of life (QoL) measurements have been used relatively infrequently in clinical practice, although individualized care planning and follow-up based on QoL information may lead to better outcomes of treatment and informed and autonomous decision-making by patients. A recent approach in assessing QoL is by individualized measures, which tap QoL as defined by the individual patient. Individualized QoL instruments, such as the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the Patient-Generated Index (PGI), have obvious appeal for use in clinical practice, since they incorporate topics of greatest concern to the individual patient, while also capturing their ratings and weightings. However, before general use in daily clinical practice can be recommended, some aspects of these instruments require further research, particularly issues concerning reliability, feasibility, interpretation and effectiveness.

Counsellors' perspectives on the use of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) in an alcohol counselling setting

As part of a randomised controlled trial to investigate the feasibility of using the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) within an alcohol counselling setting, counsellors' views of using the tool were sought. Data about the service users' use of SEIQoL were collected during the counselling session, and focus groups and questionnaires were used to collect data on counsellor perceptions and experiences of using the tool. SEIQoL was easy and quick to use and provided users with a graphic, visual and dynamic means to identify important areas that contributed to their quality of life; it appeared to enhance the reflective process early on in counselling. Counsellors reported that service users requested the tool be used more frequently during the counselling process and they felt it could be a useful review tool.