A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS
BMJ 1996; 313 doi: https://doi.org/10.1136/bmj.313.7048.29 (Published 06 July 1996) Cite this as: BMJ 1996;313:29
- Anne M Hickey, research fellow in psychologya,
- Gerard Bury, professor of general practicea,
- Ciaran A O'Boyle, professor of psychologyb,
- Fiona Bradley, research fellow in general practicea,
- Fergus D O'Kelly, lecturer in general practicea,
- William Shannon, professor of general practicea
- aHIV Primary Care Research Project, Department of General Practice, University College Dublin, Coombe Healthcare Centre, Dublin 8, Republic of Ireland
- bDepartment of Psychology, Royal College of Surgeons in Ireland, Dublin 2
- Correspondence to: Dr Anne M Hickey, Department of Psychology, Royal College of Surgeons in Ireland, Lower Mercer St, Dublin 2, Republic of Ireland.
Quality of life is an increasingly important outcome measure in medicine and health care. Many measures of quality of life present patients with predetermined lists of questions that may or may not be relevant to the individual patient. This paper describes a brief measure, the SEIQoL-DW, which is derived from the schedule for evaluation of individual quality of life (SEIQoL). The measure allows respondents to nominate the areas of life which are most important, rate their level of functioning or satisfaction with each, and indicate the relative importance of each to their overall quality of life. Given its practicality and brevity, the measure should prove particularly useful in clinical situations where patient generated data on quality of life is important. This article describes the first clinical application of the measure, assessing the quality of life of a cohort of patients with HIV/AIDS managed in general practice.
Advances in diagnostic procedures, drugs, surgical techniques, and technology have rendered many acute conditions treatable, resulting in a shift in the focus of modern medicine to the management of chronic conditions. The management of chronic disease in general practice is a familiar responsibility. HIV/AIDS involves general practitioners in the management of minor illness, the referral of major illness, monitoring of disease progression, supervision of medication, support for carers, palliative care, psychological support, and many other roles. A common theme to these roles is the maintenance of quality of life.
Measuring the quality of life
The methodology used to evaluate quality of life has received considerable attention in the past decade.1 2 3 4 Traditional questionnaires impose an external value system, and weighting of the component parts of the questionnaire is standardised and fixed and is generally derived from grouped data. Although these measures may be reliable, they may not be relevant to an individual's present life situation. Apparently similar behaviours do not have the same relevance or importance for all individuals. Furthermore, the relevance or importance of particular behaviours or events does not necessarily remain static for a given individual with the passage of time or over the course of an illness.5 Thus, for valid measurement of quality of life a measure is needed that evaluates each individual on the basis of the areas of life that he or she considers to be most important, quantifies current functioning in each of these personally nominated life areas, and weights their relative importance for that individual at that particular time. A life area that is going badly for an individual but is of little importance to him or her clearly has less implication for that individual's quality of life than a life area that is going badly but is of great importance.
The schedule for the evaluation of individual quality of life (SEIQoL) was developed to assess quality of life from the individual's perspective.5 6 7 It is an interview based instrument derived from a decision analysis technique known as judgment analysis.8 9 10 The investigator can assess the level of functioning in, and relative importance of, those areas of life nominated by the respondent. The SEIQoL is a complex measure of a complex process and its use in routine clinical situations may prove impractical. We describe an abbreviated form of the measure, the SEIQoL-direct weighting (SEIQoL-DW),11 12 which replaces the more cumbersome judgment analysis technique with a simpler procedure for measuring the relative importance (weights) to the respondent of nominated life areas.
The direct weighting instrument is a simple apparatus consisting of five interlocking, coloured laminated circular disks that can be rotated around a central point to form a type of pie chart. The laminated disks are mounted on a larger backing disk, which displays a scale from 0 to 100, and from which the relative size of each coloured segment can be read (fig 1). Each segment is labelled with a life area nominated by the respondent as being important to his or her overall quality of life. The respondent adjusts the disks until the size of each coloured segment corresponds to the relative importance of the life area represented by that segment. These segments may be adjusted and readjusted until respondents are satisfied that the proportion of the pie chart given to each life area accurately reflects the relative weights they attach to those life areas. If the respondent nominates fewer than five cues, the system allows for a corresponding number of segments to be manipulated. The weighting procedure is quick to administer, colourful, tactile, and easy to understand. The SEIQoL-DW was developed and validated against the full version of the SEIQoL and found to be a valid and reliable measure of explicit weighting policies for quality of life domains.11
The segments represent five areas of life nominated by the individual; the size of the segment can be adjusted to show the relative importance of each area for the individual's quality of life
PSYCHOMETRIC PROPERTIES
Detailed psychometric properties of the SEIQoL-DW will be reported elsewhere and are available from the authors. Studies in healthy subjects have indicated that the measure is reproducible and has high criterion validity. While the weights derived from the direct weighting and the full judgment analysis procedures are similar, there are some differences. The findings suggest that the SEIQoL-DW may be measuring explicit weights about which the respondent is consciously aware, whereas the full measure may incorporate elements of judgment which are implicit and about which the respondent is unaware but which may have a bearing on the overall judgment.11
Applying the SEIQoL-DW
As with the full measure, the SEIQoL-DW is administered in a standardised semistructured interview in three steps.
Cue elicitation–“What are the five most important aspects of your life at the moment?” The individual is asked to name the five areas of life (cues) which are most important to the overall quality of his or her life. Respondents generally have no difficulty in identifying five important life areas, but if someone finds it difficult to nominate five areas, a standard list of prompts is used.
Determining current status on each cue–“How would you rate yourself on each of these areas at the moment, on a scale from the worst possible to the best possible?” The respondent rates current status against a vertical visual analogue scale labelled at the upper extremity by “as good as could possibly be” and at the lower extremity by “as bad as could possibly be.” These ratings are recorded in the form of a bar chart. The possible score range for each cue level is 0 to 100.
Quantification of relative weighting of each cue–“How do the five areas compare in importance to each other?” This final step involves quantifying the relative contribution of each elicited cue to the judgment of overall quality of life using the direct weighting instrument described above. The total value of all five weights sums to 100.
The SEIQoL and SEIQoL-DW thus allow measurement of quality of life to be completely individualised. To present information as grouped data, for making group comparisons, it is possible to derive a single index from the data–the global quality of life score. This is calculated by multiplying the individual's current self rating on each cue by the corresponding cue weight and summing the products across the five cues. This global quality of life score can range from 0 to 100; it is a continuous measure which can be subjected to parametric statistical analyses.6
Clinical application of the SEIQoL-DW
The first clinical application of the SEIQoL-DW was in a cohort of patients with HIV/AIDS who were being managed in general practice. The case group consisted of 52 people known to be HIV positive, recruited primarily through two Dublin inner city general practices and receiving some form of ambulatory care. The comparison group consisted of healthy adults, matched for age and sex, drawn from the same neighbourhood.
Figures 2-4 show quality of life profiles for three of the seropositive patients. Figure 2 represents the quality of life profile of a 31 year old man who formerly injected drugs. He rated four of the five cues he nominated as very good, with the exception of the area “having a relationship.” However, the weight he gave this last cue showed that he did not consider it important relative to the other cues; thus it did not impact greatly on his overall quality of life score, which was 82.08.
Quality of life profile of 31 year old man who formerly injected drugs
Quality of life profile of 27 year old woman, current injecting drug user
Quality of life profile of 39 year old gay man, terminally ill
Figure 3 represents the quality of life profile of a 27 year old woman who injected drugs and was homeless at the time of interview. She had been involved in drug pushing in an effort to feed her own habit and consequently had been evicted from several homes by local residents. Her family had taken her children away from her and refused to see her or to let her have access to them. She indicated very poor status on all five nominated cues at the time of interview, in particular a home; children and family; and having money available to buy drugs. The weighting assigned to the five areas was approximately equivalent. The overall quality of life score was 9.96.
Figure 4 represents the quality of life profile of a 39 year old gay man who at the time of interview was considered to be terminally ill, although he subsequently lived for several months. He rated four of the cues he nominated as reasonably good to very good, but the area of “health” was rated “as bad as it could possibly be.” When asked to weight his five nominated life areas relative to each other, he said that as long as his health was so poor, he could not give weighting to anything other than health, as his lack of good health meant that he was unable to enjoy any of the other important aspects of his life. The outcome of this weighting was an overall quality of life score of 3.
Table 1 compares the cues nominated by the case and comparison groups. There are many similarities in the areas identified: both groups nominated family and health most frequently. However, there are also important differences. Work was nominated by only 10% of the case group and 69% of the comparison group as an important life area; this may be explained in part by a higher employment rate among the comparison group, but it may also reflect differences in expectations or priorities in an HIV positive group, two thirds of whom were injecting drug users. Living conditions were nominated as important by both groups, but issues concerning homelessness were nominated by the case group only. Similarly, while spouse or partner was nominated as important by both groups, issues concerning sex and sexuality were nominated by the case group only. Issues relating to death, such as “the amount of time I have left” or “having everything sorted out before I die” featured for the case group only and– not surprisingly in a young and healthy population–did not feature for the comparison group at all.
Important life areas nominated by case and comparison groups
In general, different cues were nominated by the gay group and injecting drug users (table 2). For injecting drug users, family was nominated most frequently, followed by health, drugs and drug related issues, and money (frequently also related to purchasing drugs). For the gay group, health, friends and social life, and psychological issues such as self acceptance and sense of control were nominated with equal frequency.
Important life areas nominated by gay and injecting drug users with HIV
Table 3 compares the cues of those within the case group who were asymptomatic (Centers for Disease Control stages II or III) and those with symptoms (stage IV or with an AIDS defining illness). The cues nominated by these two groups differed minimally from one another, and the frequency with which the various life areas were nominated was broadly similar.
Important life areas nominated by asymptomatic and symptomatic patients with HIV
Conclusions
The key feature of the SEIQoL methodology is its relevance to the individual; this is assured because the respondent defines the areas to be measured. This feature is maintained in the abbreviated version of the methodology described here. Administration of the SEIQoL-DW is relatively simple and requires minimal training, available in the form of a manual from the authors.12
In this first clinical application, the SEIQoL-DW was found to be acceptable and practicable in a population that is difficult to study. It highlighted differences in key issues of quality of life identified by gay and drug using HIV positive patients and showed unexpected similarities in the key issues nominated by the asymptomatic and symptomatic HIV groups. The measure took about five or 10 minutes to complete and proved to be practical in busy clinical contexts. Its flexibility and patient centred approach make it appropriate not just for HIV related problems but potentially for many other chronic illnesses dealt with in general practice. It should also prove possible to incorporate the SEIQoL-DW into large scale clinical trials as an adjunct to health status measures.
We believe that the SEIQoL-DW has a potentially important role to play in the consultation process. By eliciting the patient's cues and their current status on and the relative importance of each, the health care team is in a better position to formulate and monitor therapeutic plans. Such information may also serve to heighten the patient's self awareness and to increase carers' insight of the patient's view of a situation. The measure should improve communication and facilitate joint decision making, leading to increased patient satisfaction and consequently to increased commitment and adherence to treatment.
The contributions of Mr John Browne, Dr Hannah McGee, and Professor C R B Joyce (Department of Psychology, Royal College of Surgeons in Ireland) in the development of the SEIQoL-DW methodology are gratefully acknowledged. Further information and manual regarding the SEIQoL-DW is available from the Department of Psychology, Royal College of Surgeons in Ireland, Mercer Building, Lower Mercer St, Dublin 2.
We thank Dr Fiona Mulcahy, genitourinary medicine clinic, St James's Hospital, Dublin; Dr Brion Sweeney, Baggot Street AIDS Resource Centre, Dublin; Mr Brogan Whittle, Aisling Clinic, Cherry Orchard Hospital, Dublin; and Sr Patricia Conway, Cherry Orchard Hospital, Dublin, for facilitating this study. Our thanks also to Mr Ronan Conroy and Dr Leslie Daly for statistical advice.
Footnotes
Funding Department of Health, Ireland.
Conflict of interest None.