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Schedule for the Evaluation of Individual Quality of Life (SEIQoL): a Direct Weighting procedure for Quality of Life Domains (SEIQoL-DW)

Authors:
Ciaran O'Boyle at Royal College of Surgeons in Ireland
Ciaran O'Boyle
John Browne
John Browne
John Browne
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Anne Hickey at Royal College of Surgeons in Ireland
Anne Hickey
Hannah Mcgee at Royal College of Surgeons in Ireland
Hannah Mcgee
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1
Schedule for the Evaluation of Individual Quality of Life (SEIQoL):
a Direct Weighting procedure for Quality of Life Domains
(SEIQoL-DW)
Administration Manual
Department of Psychology, Medical School, Royal College of
Surgeons in Ireland, Mercer Building, Mercer St, Dublin 2,
Ireland
Ciaran A.O'Boyle1, John Browne1, Anne Hickey1.Hannah M. McGee1, C.R.B. Joyce2.
1. Department of Psychology, Medical School, Royal College of Surgeons in Ireland.
2. University Psychiatric Policlinic. University of Bern, Switerland.
© Department of Psychology, Royal College of Surgeons in Ireland, 1995.
2
CONTENTS
1.0 Introduction
2.0 SEIQoL-DW administration
2.1 Administration procedure
2.2 Potential problems in administration
3.0 Scoring the SEIQoL
3.1 Recording scores
3.2 Deriving SEIQoL outcome data
3.3 Presenting data
3.4 Using SEIQoL-DW in prospective study designs
4.0 References.
Acknowledgements: The development of the SEIQoL was made possible through the
financial support of CIBA Geigy Ltd., Basle, Switzerland and the Royal College of
Surgeons in Ireland. Specific studies were also funded by the Irish Health Research
Board, The Arthritis Foundation of Ireland, the British Geriatric Society and the
HIV Primary Care Research Project.
3
SCHEDULE FOR THE EVALUATION OF QUALITY OF LIFE
(SEIQoL):
A Direct Weighting Procedure for Quality of Life Domains
CA O'Boyle, J Browne, A Hickey, HM McGee, CRB Joyce.
Department of Psychology, Royal College of Surgeons in Ireland, Mercer
Building, Mercer St. Lower, Dublin 2. Ireland.
1.0 Introduction
The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) is an interview-based
instrument for the assessment of quality of life (QoL) of the individual. The interview procedure
associated with the full version of the SEIQoL (McGee et al, 1991; O'Boyle et al. 1992) requires
considerable time to complete (10-20 minutes) and thus may be primarily suitable for research
settings or clinical situations where the instrument is being used as part of the process of having the
individual consider a range of options or outcomes in evaluating QoL. The SEIQoL has been used
with a variety of patient groups, but its applicability may be limited in illnesses which impair
cognitive functioning or motivational state. Successful completion of the SEIQoL requires, inter
alia. insight into the factors which determine one's quality of life. the ability to think abstractly and
the ability to make judgments based on information presented in diagrammatic form. Therefore, its
use with patients in whom these abilities are impaired may be problematic (Coen et al, 1993).
A direct weighting procedure for QoL domains that is more suitable for routine clinical use than
Judgment -Analysis (JA) and that may impose fewer demands onindividuals with reduced cognitive
function, has been developed for the SEIQoL, Psychometric information on the procedure has been
obtained from a healthy adult population (Browne et al, in preparation).
The procedure for administering the method is as follows:
4
Administration of SEIQoL using the direct weighting (DW) procedure
2.0 Administration
The SEIQoL and SEIQoL-DW is administered in the form of a semi-structured interview. The
interviewer first elicits the five areas of life considered most important by the individual in
determining his/her QoL. The level of satisfaction /functioning in each area is next recorded followed
by the SEIQoL-DW task which allows the interviewer to determine the relative importance of each
QoL area using the disk provided.
A SEIQoL interview form,SEIQoL-DW disk. pen and non-permanent marker pen are required for
interview.
2.1 Administration procedure
Step 1: Introduction
Read the following to the respondent:
"For each of us. happiness and satisfaction in life depends on those parts or areas of life which
are important to us. When these important areas are present or are going well, we are
generally happy but when they are absent or are going badly we feel worried or unhappy. In
other words, these important areas of life determine the quality of our lives. What is considered
important varies from person to person. That which is most important to you may not be so
important to me or to your husband/wife/children/parents/friends (mention one or two of these
groups as appropriate)...and vice versa".
"I am interested in knowing what the most important areas of your life are at the moment.
Most of us don't usually spend a lot of time thinking about these things. Indeed, we often only
notice that certain things are important when something happens to change them. Sometimes it
is easier to identify what is important by thinking about the areas of life that would (or do)
cause us most concern when they are missing or are going badly."
Step 2: Eliciting the five most important aspects of life (Cues)
Ask the respondent:
"What are the five most important areas of your life at present - the things which make your life
a relatively happy or sad one at the moment......the things that you feel determine the quality of
your
life?"
If the respondent does not understand what is required the question may be rephrased in the
following ways :
"What parts of your life are most important?../ What things are most important?.../ 'The most
important things in my life are...'."
l elicit areas. NOT individuals, e.g. marriage, not wife. Do not give examples.
5
l The meaning of each cue for the respondent must be documented at this stage on the Cue
Definitions Record Form. Establish what the respondent means by each quality of life area named
as being important. For example, if an individual were to name golf as a cue, this may relate
primarily to leisure activity, but equally it may represent social activity, or physical mobility.
Similarly, if 'religion' were named as a cue it might relate to the respondent's spiritual life. but
might equally relate to being physically able to get to church, or to the social dimension of meeting
one's friends at church. This is particularly important for subsequent review of data. and of obvious
relevance when respondents must be re-assessed at some future date in order to ensure that the
same cues are being considered.
l Having defined what the respondent means by the cue. it is important that the cue. as labelled by
the individual, be used by the interviewer and not the interviewer's interpretation of what the
respondent is saying.
l Should the respondent volunteer cues which resemble quality of life' in meaning (e.g. satisfaction,
life quality), the interviewer should probe for more specific cues. Cues such as 'happiness', 'attitude
to life', 'morale' are acceptable.
l If it is absolutely necessary to make some suggestions, then read the following list, excluding any
cues already mentioned - family, relationships, health, finances, living conditions, work, social
life, leisure activities, religion/spiritual life. This list is derived from our findings with a range of
populations and represents the cues most commonly elicited, in descending order of frequency. It
provides for consistency across interviewers where such prompting is absolutely necessary.
Step 3: Determining levels
Say to respondent:
"Now that you have named the five most important areas in your life, I am going to ask you to
rate how each of these areas are for you at the moment. First I will show you an example of how
the rating is done".
Place the Sample Cue Levels Record Form between you and me respondent so that the respondent
can clearly see how you carry out the rating.
"First look at this box (indicate). As you can see. there are spaces at the bottom in which I can
write the five important areas of my life (indicate), and there is a scale along the left hand side
(indicate). The scale ranges from 'worst possible' on the bottom to 'best possible' on the top,
and passes through levels such as 'very bad' - 'bad' -'neither good nor bad' - 'good' - and 'very
good' between the two extremes.
The first important area of my life is X (use a cue not already nominated by the respondent and
write it in the first space at the bottom of the rating box) and if this is going very well at the
moment. I can show this by drawing a bar like this (draw a bar approx. 80mm high). I am using
the scale (indicate) to decide how high my bar should be. The nearer I draw the bar to the
bottom line. the poorer my rating of that area of my life and the nearer I draw it to the top line.
the better my rating of that area of my
6
life. A mark in the middle range would indicate that I am rating life as neither good nor bad.
but somewhere in between."
Now proceed with the ratings for the remaining cues :
Second cue - "if X2 (use a cue not already nominated by the respondent and write it in the second
space) is going as well as is possible, I would rate it by drawing a bar like this"...(draw a bar
100mm high).
Third cue - "if X3 (use a cue not already nominated by the respondent and write it in the third space)
is going very badly. I would rate it like this"...(draw a bar approx. 15mm high).
Fourth cue - "if X
4 (use a cue not already nominated by the respondent and write it in the fourth
space) is just all right, or 'fifty/fifty'. I would rate it like
this"...(draw a bar approximately 50mm high).
Fifth cue - X5 (use a cue not already nominated by the respondent and write it in the fifth space) -
(draw a random rating).
"This provides a picture of life as I might think of it at the moment.
Step 4: Elicit rating of present life
Place the Cue Levels Record Form between you and the respondent. Write the respondent's five cues
in the appropriate spaces under the box. Give the respondent a pen or pencil.
Say to respondent:
"Now I want you to rate the five most important areas of your life, as you see presented here
(indicate). Firstly, draw a bar which represents how you would rate yourself on each of these
areas at the moment. As in the example I've just shown you, the nearer you draw the bar to the
bottom line. the poorer you are rating that area of your life and the nearer you draw it to the
top line, the better your rating of that area of your life".
Have respondent draw bars.
Step 5: Direct Weighting Procedure
Say to respondent:
"I would like you to show me how important the five areas of life you have nominated are in
relation to each other, by using this disk (indicate SEIQoL-DW). People often value some areas in
life as more important than others. This disk allows you to show me how important each area in
your life is by giving the more important areas a larger area of the disk. and the less important
areas a smaller area of the disk. In my life. for example. X (name cue not already chosen by
respondent) is about this important (manipulate disk so that X represents 30% of space available).
X2 however is less important than X, so it has only this much of the pie (manipulate disk so that
X2 represents 20% of space available). X3 on the other hand is more important than X, so it has 6
7
this much of the pie (manipulate DWP so that X3 represents 40% of space available). Finally, X4
and X5 are the least important areas of life for me, and I value them about the same (manipulate
disk so that X4 and X5 represent 5% each of space available). Now thinking about the five areas of
life you have mentioned (write the name of each cue along the cut edge of one of the 5 coloured
disks with a non-permanent marker [disks may also be marked with stick-on 'post it' lables indicating
the cues if preferred]). I would like you to show me how important these areas are in relation to
each other by moving the disks around until their relative size represents your view of their
importance."
2.2 Potential problems in administration
The following are the problems most commonly encountered in SEIQoL administration.
l Nominating important life areas:
The respondent cannot think of 5 cues.
Suggested solution: use prompt list provided.
l Determining cue levels:
The respondent conceives the task as drawing bars in terms of their importance rather than in terms of
how these areas are for them at the moment.
Suggested solution: Remind the respondent that the task is to "rate how each of these areas are for
you at the moment".
l Determining cue weighting: The respondent conceives the task as dividing up the pie diagram
in terms of current functioning in that area. Suggested solution: Remind the respondent that the
task is to indicate how important each of the 5 areas are at present relative to each other.
3.0: Scoring the SEIQoL
3.1 Recording Scores
Record on the Interview Record Form:
l the length of time the respondent took to complete the task
l the interviewer's rating of the respondent's understanding of the method
l whether the interviewer felt that the respondent became fatigued/bored during the task
l the interviewer's overall rating of the validity of the information obtained
l scores of the weights assigned to SEIQoL-DW for each cue.
3.2 Deriving SEIQoL outcome data
(i) Cue labels and their definitions
(ii) Cue levels
(iii) Cue weights
(iv) The SEIQoL Index
8
(i) Cue labels and their definitions
During Step 2 (eliciting the five most important aspects of life), the meaning of each cue for the
respondent is summarised on the Cue Definitions Record Form, together with the label that the
respondent used for each cue. For example, different respondents may use "religion" as a cue label,
but it can have various meanings: a spiritual activity: a social activity (meeting friends at services), or
a physical activity reflecting mobility (being able to walk to services). The definition is important for
subsequent understanding of what was meant by the cue label. It is also important in summarising
cues from a number of respondents for grouped data presentation.
(ii) Cue levels
The cue levels are elicited during Step 3 when the respondent draws five bars on the Cue Levels
Record Form. Levels are scored by measuring the vertical height of each bar in millimetres. This
yields five scores which are independent continuous measurements, ranging from 0 to 100. They can
be analysed using parametric statistical methods.
(iii) Cue weights
To calculate weights from SEIQoL-DW, align edge of green disk tab with the '0' (zero) gradation and
note the (weight (0-100)) given to each of the 5 life areas by reading the amount of disk space
assigned against the gradation on the outer edge of the disk. Divide each weight by 100 since the
weights when calculating the SEIQoL Index range from 0.00-1.00 in order that the overall Index
(levels X weights) sum from 0-100.
(iv) The SEIQoL Index
The SEIQoL is intended primarily as an individual measure. Where group comparisons are
required, a global index can be calculated which may be used in within-subject or between-subject
study designs. As the index is a continuous measure ranging from 0 to 100 it can be analysed using
parametric statistical methods. Having obtained levels and weights for each of the five cues, as
described previously, the SEIQoL index is calculated as follows:
l For each cue multiply the level by the weight, then sum these products across the five cues:
SEIQoL Index =
∑
(levels x weights)
Care should always be taken in interpreting the index, as it is the sum of the products of individual
cue levels by cue weights, each of which may vary independently. The index should be interpreted in
the context of the pattern of levels and weights generated for each respondent.
3.3 Presenting data
The data from each individual respondent can be presented in tabular form giving the elicited cues,
the levels and the weights. For grouping data SEIQoL Index scores may be presented (cf. McGee et
al., 1991, O'Boyle et al., 1992).
3.4 Uing SEIQoL-DW in prospective study designs
In prospective study designs, or in situations where SEIQoL-DW is employed over time to evaluate
an intervention, recommended practice is that new cues are elicited at each assessment. Cues
nominated at the initial assessment should then be provided to the individual and the SEIQoL-DW
procedure gone through again, in order to facilitate direct comparison between initial and subsequent
assessments.
9
References
O'Boyle CA, McGee HM, Hickey A. Joyce CRB, Browne J, O'Malley K, Hiltbrunner B. The Schedule
for the Evaluation of Individual Quality of Life (SEIQoL): Administration Manual. Dublin: Royal
College of Surgeons in Ireland, (1993).
McGee, H.M., O'Boyle C.A., Hickey A., O'Malley K. and Joyce C.R.B. Assessing the quality of life of the
individual: the SEIQoL with a healthy and a gastroenterologv unit population. Psychological Medicine 1991;
21: 749-59.
O'Boyle, C.A.. McGee. H.M., Hickey. A.. O'Malley. K. and Joyce, C.R.B. Individual quality of life in
patients undergoing hip replacement. Lancet 1992; 339: 1088-91.
O'Boyle, C.A.. Assessment of Quality of Life in Surgery. British Journal of Sugery 1992,: 79:
395-398.
Coen, R.F., O'Mahony, D., O'Boyle, C.A., Joyce. C.R.B.. Hiltbrunner, B.. Walsh. J.B. and Coakley, D..
Measuring the quality of life of dementia patients using the Schedule for the Evaluation of Individual Quality
of "Life. Irish Journal of Psychology, (Special Issue on the Elderly) 1993; 14: 154-63.
O'Boyle CA. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL). International Journal
of Mental Health 1994; 23: 3-23.
Browne JP, O'Boyle CA, McGee HM. Joyce CRB. McDonald NJ, O'Malley K.Hiltbrunner B. Individual
quality of life in the healthy elderly. Quality of Life Research 1994; 3: 235-44.
Jovce CRB. How can we measure individual quality of life? Schweizerische Medizinische Wochenschrift
1994;124: 1921-6.
O'Boyle, C.A., McGee, H.M., Joyce C.R.B. Quality of life: assessing the individual. In G. Albrecht and R
Fitzpatrick (eds.) Quality of Life in Health Care. New York: JAI Press. (In press).
Addendum
Hickey .AM. Bury G, O'Boyle CA, Bradley F. O' Reilly FD, Shannon W. (1996) A new short -form
individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS'.
British Medical Journal, 313:29-33
10
CUE DEFINITIONS RECORD FORM
DESCRIPTION OF CUE CUE LABEL
(Tick any cues elicited by reading list to person).
11
CUE LEVELS RECORD FORM
12
SAMPLE CUE LEVELS RECORD FORM
13
INTERVIEW RECORD FORM
1. TIME TAKEN
2. UNDERSTANDING OF METHOD
3. FATIGUE/BOREDOM
4. OVERALL VALIDITY OF INFORMATION (in light of 2 & 3 above)
5. WEIGHTS ASSIGNED TO CUES
... The study looked at lung cancer patients, from diagnosis, receiving palliative treatment, in receipt of palliative care from diagnosis, measured their health-related QoL (HRQoL) [28,29] , their individualised QoL and incorporated methodology to assess for possible re-conceptualisation and/or recalibration, i,e, RS of their previous QoL issues. Individualised QoL was assessed using a validated methodology, SEIQoL and SEIQoL-DW, that presents the patient with a ‗blank canvas' and the patient essentially lead the outcome [30][31][32][33][34] This study is from 2009 but as this work has not been replicated, the authors consider it important to publish. The treatments of Lung Cancer have changed since this time, but the relevance of QoL in such a very ill patient population has significant relevance [27] . ...
... The SEIQoL and SEIQoL-DW both consist of a three-stage semistructured Interview [30][31][32][33][34][35] A semi-structured interview using SEIQoL DW tool was used to gather information on all patients QoL. ...
... SEIQoL is essentially patient directed, the patient in essence, is presented with a ‗blank page' and it is the patient that delivers the information that creates the ‗graph' of their QoL. SEIQoL is developed based on the definition of QoL as ‗what the patient says it is' [30][31][32][33][34] . SEIQoL, completed using the JA methodology, gives strong scientific validity to the study with mean internal reliability (r) remaining around 0.9 throughout all Time points (Table 4) with above 0.7 being considered reliable [10] . ...
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?
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Full-text available
  • May 2020
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.
View
... Therefore, its use with patients who may be cognitively impaired may be problematic. [19,41] A simpler, more efficient clinical tool was then developed to measure SQoL based on the concept of SEIQoL. A directweighting procedure (SEIQoL-DW) for QoL domains has proven more suitable for routine clinical use than SEIQoL(uses JA, and may pose fewer demands on people with reduced cognitive functioning. ...
... The SEIQoL-DW measure has been applied to a variety of cohorts, highlighting the acceptability of SEIQoL-DW to a number of different patient groups. [19] The first clinical application of SEIQoL-DW was with a group of 52 patients with HIV/AIDS. [6] It was subsequently shown to be acceptable to patients with; terminal cancer; [5,9,10,14-16,63,72-75] severely advanced multiple sclerosis; [8] motor neurone disease; [61] patients with congenital heart disease, [11,12,18] gastric illness; [13] and elderly patients. ...
... Although patients may present with symptoms, these may or may not be bothersome. Waldron et al, [15,16,[19][20][21][22]72] when initiating the first SEIQoL/SEIQoL-DW study of palliative care patients, felt that there was an opportunity to "link" symptoms and their bother factor to the SEIQoL style interview. The methodology developed has a flowing assessment of QoL with SEIQoL/SEIQoL-DW first, then patient nominated symptoms second, followed by the patient deciding the relative "bother" of these symptoms (SB) together (if more than 1 symptom), finally a graphical patient directed measure of the "interference" of these symptoms on their overall SQoL. ...
An Exploration of the needs of a Cardiac Rehabilitation Population using a Subjective Quality-of-Life Measure
Article
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  • Jun 2020
Context: The aim of this study was to profile a cardiac rehabilitation population in the West of Ireland and establish Subjective Quality of Life (SQoL), using The Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), a validated subjective QoL measure. Bothersome symptoms (SB) and Symptom Interference in SQoL (SBIQoL) were also assessed using a using a modified SEIQoL-DW. Objectives: QoL is a difficult concept to define, therefore the medical profession often premise QoL on health and illness. The focus of this study was to explore the QoL needs of a cardiac population, with a view to informing the development of a newly formed cardiac rehabilitation support group. The SEIQoL-DW was developed to overcome the limitations of quantitative questionnaires, as it is based on the individual’s personal view of life and its quality. Methods: SQoL, symptoms and SBIQoL, of 22 individuals, who had suffered a cardiac event were explored. SEIQoL-DW is a semi-structured interview, enabling the individual to convert their perspectives into scientific values. QoL areas of importance to patients are called ‘cues’. A modified SEIQoL-DW was used to assess SB and SBIQoL. Data were analysed using both quantitative analysis and qualitative descriptive analysis. Findings: Participants highlighted a range of QoL cues; findings from this study showed that 45% of participants did not rate ‘health’ in the first five QoL cues. A significant number of participants experienced symptoms; a medium negative correlation was found between symptom interference and QoL, rho = -0.353, with high levels of symptom interference associated with low levels of QoL. Conclusions: The range of QoL cues and bothersome symptoms identified in this study had implications for the development of the group, with participants eager to participate and talk candidly about their needs. SEIQoL-DW proved to be an acceptable, reliable and valid technique for measuring both individual QoL, SB and SBIQoL, taking greater consideration of individual perspectives compared with traditional measurement approaches. The significance of nominated symptoms and SBIQoL warrants further attention, especially if these symptoms are reversible.
View
... However, an attempt to capture the individual quality of life has been made with the Schedule for the Evaluation of the Individual Quality of Life (SEIQoL) (O'Boyle et al. 1995). This instrument first asks the patient which are the favorite domains that contribute to his quality of life and then assesses the contribution and the degree of impairment in each of these domains. ...
... However, this process takes time, and most patients prefer a shorter assessment. The direct weighting version (SEIQoL-DW) uses a disk with five movable colored segments (O'Boyle et al. 1995;Hickey et al. 1996). The patient adjusts the segments according to the relevance (weight) he attributes to each domain. ...
View
... The three participants reported no difficulties in understanding the instructions on how to complete the SEIQoL-DW tool, nor did they report fatigue or boredom. The acceptability of the SEIQoL-DW was based on time taken to complete the tool, on the understanding of the method and on the level of fatigue and boredom [41,42]. ...
... Completion of the SEIQoL-DW: The Interview Record Form (IRF), the form used to record information about each participant during the interview, was subjectively analyzed for understanding, fatigue and overall validity. The IRF data, which was completed by the researcher immediately after interviews, indicated an acceptable time to complete the instrument (mean= 16.08 minutes), while the determined time to complete SEIQoL-DW is 10-20 minutes [14,29,41,42]. The least time taken to complete the tool was 12 minutes and the longest time was 21 minutes. ...
quality-of-life-and-health-related-quality-of-life-among-end-stage-kidney-disease-patients-testing-the-concepts-and-assessing-the-measures
Article
Full-text available
  • Dec 2020
Quality of Life and HealthRelated Quality of Life Among End-Stage Kidney Disease Patients: Testing the Concepts and Assessing the Measures Background Little is known about how patients with End-Stage Kidney Disease (ESKD) view their life quality, yet this is an outcome of increasing importance. Most research in this area has been conducted within a certain Western countries’ context using measures that have not been validated within our region context. Method Patients were randomly selected from a dialysis unit center in Oman. The understanding of Quality of Life (QoL) concept was explored using an individualized QoL instrument (SEIQoL-DW). A cognitive interviewing method was used to explore patients’ interpretations of the Arabic versions of two standardized measures of HRQoL, SF36v2 and QoLI-Dialysis, measures’ items, and report any difculties they might have in answering these items. Results Mean patient age was 53 years and 78% were male. All patients completed the SEIQoL-DW, (mean time 16.08 minutes). Patients appear to understand the notion of QoL. Fifty-nine cues were identifed and categorized. The most important/common aspects of life that determined individual QoL were spiritual life, family, personal health, social life, and leisure activities. A full (100%) good completionresponse rate was obtained by SF36v2 and QoLI Dialysis. Patients were able to comprehend most of the items. Two items in QoLID measure were identifed as sensitive and two items in the SF36v2 also were reported to contain complicated syntax. Conclusion SEIQoL-DW was an applicable instrument to explore the meaning of the concept of QoL among this population. Spiritual life aspect should be incorporated in any assessment of QoL and HRQoL in this group of patients. Cognitive interviewing was able to helpfully identify the range and depth of difculties with items of SF36v2 and QoLI-Dialysis within this context, yet these measures should be tested on a larger group. Keywords: Cognitive interviewing; Chronic Kidney Disease (CKD); End-Stage Kidney Disease (ESKD); Health-related QoL; Hemodialysis; Methodology; Quality of Life (QoL)
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... The user determines the relative importance, or 'weight', of each life area chosen, by manipulating the circular disks. The tool can be applied in its entirety in approximately 15 minutes (O'Boyle, Browne et al., 1993). ...
Outcomes Assessment in End -Stage Kidney Disease -Measurements and Applications in Clinical Practice http://ndl.ethernet.edu.et/bitstream/123456789/2293/1/33.pdf
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End - stage kidney disease (ESKD) is characterized by deterioration of renal function, which ends fatally in uremia, and this is detected by multisystem manifestations. The present book evaluates the state of the science in end - stage kidney disease outcomes assessment and offers perspectives on what is required to advance the field. The chapters collectively cover a diverse set of topics, which are examined in a sequence suggested by the broad section heading below. Developed as stand - alone documents, the chapters can be read in any order. Each chapter presents a number of findings and the previews below provide only a favor of the full range of results.
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... SEIQoL is a self-administered survey whereby participants are asked to write down the five areas of life they consider most important in determining their quality of life(O'Boyle, Browne, Hickey, McGee, & Joyce, 1995). The SEIQoL tool has predominantly been applied within the medical sciences. ...
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Full-text available
  • Sep 2021
There is a growing movement across the world to make better use of wellbeing measures to guide policy. This stems from the realisation that reliance on economic indicators, such as income, GDP, and unemployment, may not be adequately capturing the aspects of life that people value. But how should we be measuring wellbeing or quality of life? A mounting body of research over the past two decades has highlighted the value of participatory wellbeing frameworks, which are created by consulting with the target population and asking the question “What does wellbeing mean for you?”. However, up to now there is very little consolidated understanding of the work conducted in this space. This systematic review seeks to fill this gap, identifying 130 participatory wellbeing studies which span every region of the world and all life stages. The review identifies a wide range of theories, methods, and participatory techniques that have been utilised to develop participatory wellbeing frameworks which can be replicated for similar studies going forward. By thematically analysing understandings of wellbeing into 30 overarching areas, the findings show that communities and population groups throughout the world have wide-ranging and diverse conceptualisations of wellbeing. In sum, we highlight that while there are some similarities in what wellbeing means to people from different population groups, nuances exist within every group. Given this diverse understanding of wellbeing throughout the world, it is vital that research, policy and development initiatives take this into account. Doing so will help support policy and programs to address the aspects of life that are important to individuals, and subsequently improve the lives of people throughout the world in a more meaningful way.
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... Schedule for the Evaluation of Individual Quality of Life (SEIQoL-DW). Individual QoL was rated with the SEIQoL direct weighting procedure (O'Boyle et al., 1993), which is based on a structured interview. Participants first identify the five main domains that they consider most important for determining their QoL. ...
Integrated neuropsychological and cognitive behavioural therapy after acquired brain injury: A pragmatic randomized clinical trial
Article
  • Apr 2021
After acquired brain injury (ABI) many patients suffer from persistent cognitive and emotional disturbances. The aim of this study was to investigate the treatment outcome of an integrated intervention, combining neuropsychological and cognitive behavioural therapy (nCBT), against waitlist (WL) in outpatients with ABI. Individuals seeking outpatient treatment for cognitive and emotional problems after ABI were randomly allocated to nCBT (n = 27) or WL (n = 29) and completed assessments at baseline, post-treatment/WL and at six-month follow-up. The primary outcome measures were general psychopathology and functional activity in daily life. The nCBT group showed significant improvement for general psychopathology post-treatment when compared to WL. nCBT was also superior to WL regarding the secondary outcomes, i.e., the reduction of negative affect and the improvement of quality of life. No significant differences for functional activity and community integration were observed. Significant pre–post effect sizes ranged between small for functional activity and medium for quality of life. The positive effects were maintained at follow-up. The majority of patients with cognitive and emotional problems after ABI benefit from an integrated approach that offers cognitive remediation and psychotherapy. However, the heterogeneous sequelae of ABI and the moderate sample sizes in clinical trials present a methodological challenge to ABI research.
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Gibt es entitätsspezifische Kriterien für den Beginn der spezialisierten Palliativversorgung für nicht heilbare Krebserkrankungen? Ein Scoping Review
Article
  • Apr 2023
Zusammenfassung Hintergrund/Ziel Patienten mit nicht heilbaren Krebserkrankungen eine spezialisierte Palliativversorgung zum richtigen Zeitpunkt anzubieten, stellt eine Herausforderung dar. Ziel des Scoping Reviews war, geeignete entitätsspezifische Kriterien zu finden. Methode Im Februar 2020 wurde in den Online-Datenbanken PubMed und Scopus ein Scoping Review durchgeführt. Ziel der Literatursuche war die Identifikation von englisch- und deutschsprachigen Originalarbeiten, die zwischen 2009 und Februar 2020 veröffentlicht wurden und Hinweise darauf geben, welche entitätsspezifischen und entitätsunabhängigen Kriterien nicht heilbarer Krebserkrankungen herangezogen werden, um betroffene Patienten zeitgerecht in die spezialisierte Palliativversorgung zu integrieren. Insgesamt wurden 13 relevante Artikel identifiziert. Der Methode des Scoping Reviews entsprechend, wurde auf eine formale Bewertung der methodischen Qualität der eingeschlossenen Literatur verzichtet. Ergebnisse Unter den relevanten Publikationen waren 6 Reviews und 7 Originalarbeiten. In keiner der analysierten Publikationen wurden explizit charakteristische Kriterien zu spezifischen Krebsentitäten angeführt. Für die Integration in eine spezialisierte Palliativversorgung wurden unabhängig der Krebsentität als Kriterien Unheilbarkeit/fortgeschrittenes Tumorleiden, Lebensqualität, belastende Symptome, ECOG-Status, psychosoziale Bedürfnisse, Komorbiditäten, tumorassoziierte Komplikationen, Behandlungsentscheidung/keine Behandlungsmöglichkeiten und begrenzte Lebenszeitprognose herangezogen oder vorgeschlagen. Die Erhebung der Kriterien erfolgte mittels Instrumenten, für die keine konkreten Kennwerte angegeben waren, die eine zur Einbindung in spezialisierte Palliativversorgung relevante Ausprägung der Kriterien detektieren könnten. Schlussfolgerung Für den Zeitpunkt einer zeitgerechten Integration der spezialisierten Palliativversorgung bei nicht heilbaren Krebserkrankungen gibt es bislang keine entitätsspezifischen Kriterien und Kennwerte. Aus der Analyse lässt sich jedoch ableiten, dass entitätsunabhängig alle Patienten mit einer nicht heilbaren bzw. fortgeschrittenen Krebserkrankung, die unter Verminderung/Verlust ihrer Lebensqualität und einer komplexen Symptomlast, v.a. Depressionen und Schmerzen leiden, das Angebot einer spezialisierten Palliativversorgung erhalten sollten. Kriterien generell als Kennwerte festzulegen und konsekutiv einen Messwert bzw. Cut-off-Wert zu definieren, könnte eine Möglichkeit sein, über z.B. ein Scoringsystem eine zeitgerechte Integration der Palliativmedizin zu erleichtern. Unklar ist bislang, welche Kombinationen von Erhebungsinstrumenten oder Screeningtools der Erfassung einer zeitgerechten Integration dienen könnten.
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2022-0189 Petrova-1
Book
Full-text available
  • Oct 2022
Tato publikace se na základě výzkumného šetření s designem observačně-analytické průřezové studie věnovala analýze životní spokojenosti a subjektivního zdraví na vzorku 150 dospělých respondentů s mozkovou obrnou a 150 dospělých respondentů bez přítomnosti tělesného postižení. Cílem této práce bylo prozkoumat vztah subjektivního zdraví a životní spokojenosti, ale také hodnocení těchto fenoménů u osob s mozkovou obrnou. Jako měřící nástroj byl použit dotazník WHODAS 2.0 pro hodnocení subjektivního zdraví a dotazník SWLS (Satisfaction With Life Scale) pro hodnocení životní spokojenosti. Pro potřeby našeho výzkumu jsme zvolili dvanáctipoložkovou verzi dotazníku WHODAS 2.0 (verze pro samostatné vyplnění tázaným), která byla na základě zpětného překladu upravena pro použití v českém prostředí. Dotazník životní spokojenosti SWLS zjišťoval, nakolik respondenti souhlasí s 5 výroky týkajícími se životních postojů. Téma výzkumného šetření bylo podloženo literárním review se systematickou vyhledávací strategií. Tímto způsobem byl doložen knowledge gap poukazující na absenci studií zjišťujících vztahy fenoménu subjektivního zdraví a životní spokojenosti. Mezi oběma fenomény se prokázala přímá souvislost. Přítomnost diagnózy mozková obrna má na vnímání subjektivního zdraví a životní spokojenosti podstatný vliv a osoby s mozkovou obrnou vykazují významně nižší míru subjektivního zdraví a životní spokojenosti v porovnání s kontrolní skupinou. Analýzou dílčích položek dotazníku WHODAS 2.0 bylo zjištěno, že osoby s mozkovou obrnou se nejvíce odlišují od běžné populace v oblasti sebeobsluhy a životních aktivit, mobility, učení (doména porozumění a komunikace) a v některých dílčích položkách, např. při jednání s lidmi, které neznají. Lidé s mozkovou obrnou jsou se svým životem mírně nespokojeni, naopak se svým zdravím jsou mírně spokojeni. Podle našich výsledků jsou se svým životem spokojenější muži než ženy, a to u souboru osob s mozkovou obrnou i u kontrolního souboru. Místo bydliště má na vnímání subjektivního zdraví a životní spokojenosti značný vliv. Lepší výsledky získali lidé žijící ve městech. V partnerských vztazích se ukazuje, že lidé s pozitivnějším hodnocením vlastního zdraví a spokojenosti se životem mají partnerské vztahy a lidé, u kterých se objevují subjektivně náročnější životní těžkosti, mají méně často partnerský vztah. Pozitivnější výsledky v oblasti zdraví a spokojenosti mají lidé, kteří mají ve své péči dítě. U faktoru vzdělání platí přímá úměra, čím se jedná o vzdělanější osobu, tím pozitivnější je hodnocení jejího zdravotního stavu. Nejlépe hodnotí svůj život a zdravotní stav lidé se středoškolským a vysokoškolským vzděláním. Spokojenost s životem je nejvyšší v produktivním věku. Pozitivní hodnocení zdraví se objevuje v mladším věku. V průběhu života se však spokojenost velmi mění, kolísá v souvislosti s různými faktory. Hlavní výsledky výzkumného šetření odpovídají výsledkům předchozí pilotní studie realizované v České republice (Adamove, 2016), ale také výsledkům zahraničních studií, které ukazují, že osoby s disabilitou mají průměrně nižší míru subjektivního zdraví i životní spokojenosti. Na základě zjištěných dat vysvětlujeme důležitost vyhodnocování subjektivního zdraví a životní spokojenosti v rehabilitačním procesu osob s mozkovou obrnou, a to nejen na úseku léčebné rehabilitace, ale také v rámci rehabilitace pedagogické, sociální a pracovní. Jedním z odborníků, který může tyto měřící nástroje používat pro efektivnější plánování intervence, je speciální pedagog. Evaluace faktorů, které souvisejí se subjektivním vnímáním vlastního zdraví a životní spokojeností, jsou podstatnými doplňky informací, které se týkají objektivní diagnózy a funkčního stavu, a přispívají k identifikaci smysluplných a personalizovaných cílů rehabilitačního procesu pro konkrétního jedince s mozkovou obrnou. Význam této publikace spočívá především ve skutečnosti, že obsahuje (i v mezinárodním kontextu) první studii, která prokázala přímý vztah mezi fenoménem subjektivního zdraví a životní spokojeností. Tento poznatek je možné využít pro vývoj rehabilitačních politik, legislativy a služeb. Zároveň se jedná patrně o první studii v českém prostředí, která využila dotazník WHODAS 2.0 pro výzkum u osob s mozkovou obrnou – také tuto skutečnost lze považovat za metodologický přínos vzhledem k důrazu, který Světová zdravotnická organizace klade na výzkum fenoménu subjektivního zdraví.
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Conceptualisations of wellbeing and quality of life: A systematic review of participatory studies
Article
  • Dec 2022
  • WORLD DEV
There is a growing movement across the world to make better use of wellbeing measures to guide policy. This stems from the realisation that reliance on economic indicators, such as income, GDP, and unemployment, may not be adequately capturing the aspects of life that people value. But how should we be measuring wellbeing or quality of life? A mounting body of research over the past two decades has highlighted the value of participatory wellbeing frameworks, which are created by working with the population of interest and asking the question “What does wellbeing mean for you?”. However, up to now there is very little consolidated understanding of the work conducted in this space. This systematic review seeks to fill this gap, identifying 130 participatory wellbeing studies which span every region of the world and all life stages. The review identifies a wide range of theories, methods, and participatory techniques that have been utilised to develop participatory wellbeing frameworks which can be replicated for similar studies going forward. By thematically analysing understandings of wellbeing into 30 overarching areas, the findings show that communities and population groups throughout the world have wide-ranging and diverse conceptualisations of wellbeing. In sum, we highlight that while there are some similarities in what wellbeing means to people from different population groups, nuances exist within every group. Given this diverse understanding of wellbeing throughout the world, it is vital that research, policy and development initiatives take this into account. Doing so will help support policy and programs to address the aspects of life that are important to individuals, and subsequently improve the lives of people throughout the world in a more meaningful way.
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The Schedule for the Evaluation of Individual Quality of Life (SEIQoL)
Article
Full-text available
  • Sep 1994
Discusses the concept, themes, and cross-cultural (CC) perspectives of quality of life (QOL) research. To overcome limitations of CC analysis of QOL, the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) is based on a phenomenological approach to the measurement of QOL in which the terms of reference are determined by the individual. The propositions underlying the development of SEIQoL and the 3 elements measured are discussed. Judgment analysis is used to determine the importance of life cues. The data generated by the SEIQoL includes cue labels, levels, and weights, and a global index. A direct weighting procedure for administration of the measure is discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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The Schedule for the Evaluation of Individual Quality of Life (SEIQoL). Administration Manual
Article
  • Jan 1993
Advances in the clinical sciences this century have resulted in an impressive range of diagnostic procedures, therapies, drugs and surgical techniques which have revolutionised the management of heretofore fatal conditions. In addition to being concerned about life expectancy, people are also concerned about the quality of their lives. Partly in response to the views of patients, assessment of patient Quality of Life (QoL) is becoming increasingly important in medicine, nursing and in the behavioural sciences. It has already become an important outcome variable in assessing the impact of disease, illness and treatment (Spilker, 1990; Walker and Rosser, 1993; Bowling 1991; O'Boyle, 1992). QoL is a multi-dimensional construct and there are various approaches to its evaluation. The approach varies depending on the aims of the exercise. Health economists, for example, use techniques such as the QALY (Quality Adjusted Life Year), standard gamble and time-trade-off techniques in order to incorporate QoL measures into economic analysis and clinical trials. Clinical research has utilised standardised and disease specific measures, usually in the form of questionnaires, in order to determine the impact of disease and treatment on patients' QoL. One of the problems of conducting research in this area is that there is no single agreed definition of QoL nor is there a single 'gold standard' measurement technique. However, there is broad agreement that studies of health related QoL should include assessments of physical functioning, including somatic sensations such as physical symptoms and pain; psychological function including concentration and mood; social and sexual functioning and occupational status. Many researchers also assess patients' global satisfaction and the economic impact of the condition. While QoL scales and questionnaires, as well as the methods of rating and analysing them, have been developed by assessing the QoL of individuals, the specific items and the response categories do not represent the free choice of individuals who are subsequently investigated using the scale. Furthermore, the measures will often have been standardised in samples other than those currently being assessed. Results are generally presented as group statistics and provide little or no data on the QoL of individual patients.
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Individual Quality of Life in Patients Undergoing Hip Replacement
Article
  • Jun 1992
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 resources. 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 prospective 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 questionnaire (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.
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Assessment of quality of life in surgery
Article
  • May 1992
The concept of patients' quality of life is assuming increasing importance in modern medicine and surgery. Interventions are increasingly being assessed in terms of their impact on such areas of functioning as mobility, mood, cognitive function, ability to fulfil occupational and social roles, and general life satisfaction. This paper discusses the theoretical underpinnings of the quality-of-life paradigm and its practical relevance for modern surgery.
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Assessing the quality of life of the individual: The SEIQOL with a healthy and a gastroenterology unit population
Article
  • Sep 1991
SYNOPSIS Current methods of measuring quality of life (QoL) impose an external value system on individuals, rather than allowing them to describe their lives in terms of those factors which they consider important. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) was developed to overcome such limitations. The QoL of 42 healthy attenders at an international immunization clinic was assessed using SEIQoL. Judgement reliability was high ( r = 0·74) and individuals' judgement policies accounted for a large percentage of the variance in overall QoL ( R ² = 0·75) demonstrating the construct validity of judgement analysis in this context. In a second study of QoL of out-patients suffering from irritable bowel syndrome (IBS) ( N = 20) or peptic ulcer disease (PUD) ( N = 20) was assessed using SEIQoL. Judgement reliability was lower ( r = 0·54) although statistically highly significant ( P < 0·01), and the variance in overall QoL judgements explained was high ( R ² = 0·74). SEIQoL is an acceptable, reliable and valid technique for measuring individual QoL that takes greater account of individual perspectives than traditional measurement approaches.
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[Assessment of quality of life after antireflux surgery]
Article
  • Dec 2000
  • Ann Chir
To assess the quality of life (QoL) of patients operated for gastroesophageal reflux disease (GERD). This prospective study included 82 consecutive patients submitted to antireflux surgery between October 1998 and January 1999. A new questionnaire was used to assess their QoL: the Gastrointestinal Quality of Life Index (GIQLI) that includes 36 items concerning 5 dimensions: symptoms, vitality, emotions, social relations and medical treatment. The series consisted of 44 men and 38 women with a mean age of 47 years (range: 18-78). QoL was assessed before and 6 months after surgery; the follow-up rate was 94% (77/82). The pre- and postoperative GIQLI scores of the study group and the GIQLY score of a control group of 110 healthy patients were compared. Before surgery, the GIQLI score (90 +/- 23) was greatly impaired compared to the score (123 +/- 13) observed in the control group (p < 0.001). After surgery, the GIQLI score (110 +/- 23) increased significantly (p < 0.001), but remained statistically lower than the score of the control group (p < 0.001). The postoperative score recorded in the symptoms dimension was lower than the control group score: 55 +/- 11 versus 66 +/- 6 (p < 0.001), while no significant difference was observed in the other 4 dimensions. Univariate statistical analysis revealed that the postoperative GIQLI score (y) was correlated with the preoperative GIQLI score (x) according to the formula: y = 0.43 x + 71 (p < 0.001) and the sex of the patients, as the postoperative GIQLI score was higher in male patients (115 +/- 19) than in female patients (103 +/- 23) (p < 0.02). The QoL of the patients was greatly improved after antireflux surgery, but remained lower than that of a control group of healthy subjects. Better patient selection should improve the results. In our series, male patients or patients with a high preoperative GIQLI score were the best candidates for antireflux surgery.
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Individual quality of life in the healthy elderly
  • Jan 1994
  • 235-279
  • Jp Browne
  • O Boyle
  • Ca Mcgee
  • Hm Joyce
  • Crb Mcdonald
  • O Malley
  • K Hiltbrunner
Browne JP, O'Boyle CA, McGee HM. Joyce CRB. McDonald NJ, O'Malley K.Hiltbrunner B. Individual quality of life in the healthy elderly. Quality of Life Research 1994; 3: 235-44.
Quality of life: assessing the individual Quality of Life in Health Care
  • O ' Boyle
  • C A Mcgee
  • H M Joyce
O'Boyle, C.A., McGee, H.M., Joyce C.R.B. Quality of life: assessing the individual. In G. Albrecht and R Fitzpatrick (eds.) Quality of Life in Health Care. New York: JAI Press. (In press).
How can we measure individual quality of life?
  • Jan 1994
  • 1921-1927
  • Crb Jovce
Jovce CRB. How can we measure individual quality of life? Schweizerische Medizinische Wochenschrift 1994;124: 1921-6.