Joyce (1994:51) on reviewing the assessment of individual QoL, questioned whether studies asked what was meaningful change for an individual. He claimed that individually measured QoL and change may be a more useful tool for clinicians in their outcome assessments of
treatment. Involving the perspective of the individual in the assessment of change in QoL has been reviewed elsewhere (O’Boyle et al. 1994). However, few studies have considered using a qualitative approach when measuring the QoL of people with schizophrenia. Reasons may include issues of reliability as discussed in Section 2.4.2. Initially, this section will comment on studies that have incorporated open-ended questions of QoL with people with mental health problems. The focus will then move to reviewing the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) (O’Boyle, 1994). This approach is still being developed and tested and has not yet been employed with people with schizophrenia. However, consideration will be given to its applicability with this group of the population as an alternative method to the standardised instruments reviewed in Section 2.4.3.3. As the literature reviewed below illustrates, there are practical difficulties in interviewing patients with severe mental illness.
Jones et at. (1986) carried out a pilot project on patients who had been discharged from three York mental hospitals. Patients had either been long-stay in-patients (continuously in hospital for over one year) or belonged to an elderly confused group (n=132). Over half of the sample had a diagnosis of schizophrenia. In-depth interviews were carried out (ranging from 1-3 hours) based on checklists and a detailed case study per respondent. However, few respondents were capable of answering the questions and most of the information had to be gathered from significant others such as relatives, landladies, hostel wardens and hospital staff who did not always know the relevant information.
A study by Barry et a l (1993) evaluated the resettlement of long-stay patients from a North Wales hospital (n=62). An adapted version of Lehman’s (1988) Quality of Life Interview was used, supplemented with a number of open ended questions. These were included ‘to explore individual perceptions of significant life events and experiences, aspirations and attitude to discharge’. The data gathered from the open-ended questions were subject to content analysis. However, investigation of the qualitative data suggested that respondents had some difficulty responding to open-ended format questions.
The qualitative data supported the inclusion of domains such as family, social relations and leisure in the standardised instrument (Barry et a l 1993). However, excluded from current
instruments were those items pertinent to an individual’s QoL e.g. cigarettes, coffee. The authors suggested that the importance of such items to an individual’s judgement of their QoL requires further examination. They called for the exploration of the processes that contribute to self-assessed QoL to inform the factors that influence individual well-being. Improvements in QoL are dependent on an individual’s perspective and therefore, the development of an appropriate means of eliciting and including a personal perspective in QoL assessment is essential to provide relevant care packages (Barry et a l 1993). They suggest that combining exploratory qualitative approaches with standardised instruments may offer the best method of exploring the more individualistic determinants of life. The authors proposed that the use of a novel approach such as the Schedule for the Evaluation of Quality of Life (SEIQoL) (O’Boyle, 1994) method may reveal interesting new perspectives in the assessment of QoL for psychiatric patients.
The SEIQoL approach (O’Boyle, 1994) was developed in response to the question of relevance of standardised instruments where an external value system is imposed on respondents. It was also recognised that the relative importance of aspects of life will vary between respondents and for individual respondents over time or throughout the course of an illness. It would appear more crucial to focus interventions on areas of life that are important to people than those areas of life that are less important. However, lives which are subjectively highly rated but are objectively poorly rated do not dismiss the need for care agencies to work at improving the objective aspects (O’Boyle, 1994). The subjectivity of QoL and its multidimensional nature have been reported earlier in this Chapter. While the debate of the appropriateness of QoL or HRQoL as an outcome measure continues between researchers, O’Boyle et a l (1992) published empirical evidence involving patients undergoing hip replacement surgery illustrating that 50% of respondents (n=20) did not name health in their top 5 life areas that contributed to their overall QoL. This questions the underlying assumption to HRQoL measurement whose frame of reference is based on a ‘disease’ model, focussing on the impact of illness and treatment on QoL (O’Boyle, 1994). O’Boyle (1994) suggests that individuals should be afforded the opportunity to specify those areas of life that are important to him/her, to judge their progress in those areas of life and the contribution that each makes to their overall QoL.
The SEIQoL has three stages (O’Boyle et a l 1993):
• The first stage elicits 5 areas of life (cues) that are crucial to the individual’s QoL by means of a structured interview.
• The second stage requires the respondents to judge their current functioning or satisfaction with each cue by drawing a vertical bar to represent his/her functioning or satisfaction for each area. Each extremity is labelled ‘as good as could possibly be’ and ‘as bad as could possibly be’. The height of each bar represents the score for each of the life areas (cue levels) which are independent, continuous data ranging from 0-100. The SEIQoL does not prescribe the dimensions by which respondents should judge their QoL, but encourage the individual respondents to use their own evaluative criteria.
• The third stage derives the relative weight the individual allocates to each aspect in relation to the importance to overall QoL (cue weights). The relative importance of each area of life to the individual and therefore its relative weight may be derived using one of two methods: judgement analysis or a direct weighting procedure. A SEIQoL index for global QoL may be derived for group comparisons by summing the product of each cue level and its weight.
The authors of the SEIQoL originally used judgement analysis which ‘externalises the manner in which a person makes a judgment or decision-his or her “judgment policy” by using statistical methods to derive an algebraic model of the judgement process. The goal of judgement analysis is ‘ to quantify the relationships between a person’s judgment and the information, “cues”, used to make that judgement’ (O’Boyle, 1994:12). Thirty randomly generated hypothetical cases are presented to each respondent (labelled with their five cues derived at stage one). Respondents are asked to rate the global QoL of each case using a horizontal visual analogue scale, anchored by ‘best life imaginable’ and ‘worst life imaginable’. Multiple regression analysis is performed on the 30 cases and the respondents’ judgments determine the relative weight of each area of life (cue). The weights are dependent on each other and total 1.0. Psychometric data in the form of internal validity and internal reliability have been published for this method (O’Boyle, 1994).
(O’Boyle, 1994). The disc consists of five stacked, centrally mounted, interlocking laminated discs. Each disc is a different colour and is labelled by the interviewer with one of the areas of life (cues) named by the respondent. The coloured discs can be rotated over each other to produce a dynamic pie chart where the relative size of each coloured ‘area of life’ represents the weight the respondents attaches to that area. The circumference of the disc has a 100-point scale so that the proportion of each coloured area may be scored to produce the individual weighting of the importance the individual attaches to each area of life. This technique enables the most important areas of life to the individual to be incorporated within their scoring. This method has the added advantage of the respondents being able to visually revise their judgements. The method has been shown to be reproducible and have high criterion validity in healthy volunteers. This method has successfully been employed in a study determining the QoL of patients with HIV/AIDS (Hickey et a l 1996).
The relative merits of each method for deriving cue weights were compared using a convenience sample of 40 healthy volunteers (Browne et a l 1997). Judgement analysis required 10-60 minutes for explanation and administration to the respondents. This suggests that it has limited utility in routine clinical practice or where frequent measurement is required. The authors discuss the ‘compensatory decision making purposes’ required for this weighting process. Respondents must have the ability to make an overall judgement by distinguishing the individual merits of weighted information, rather than a summed approach of all information. Essential to this process is the cognitive status of the respondents and more work is required to examine the impact of varying levels of cognition. An advantage to this process is the decreased probability of social desirability bias, and the possibility of gaining measures of internal reliability and validity for individual interviews.
Alternatively, the direct weighting procedure disc is shorter and cognitively less demanding. However, further work is required with respondents who are cognitively impaired and to document the psychometric properties in clinical settings. Attention was drawn to the differences in the type of weight set each system was eliciting (Browne et a l 1997) and therefore, the appropriateness of comparing the two methods. Judgement analysis was designed to access implicit knowledge (unconscious thought), whereas the direct weighting procedure accesses explicit knowledge (conscious thought). It is unknown if QoL
preferences are dependent on implicit knowledge structures or information directly accessible to the individual. The authors suggested that if individuals are induced to think about their current circumstances and the interaction these have with their QoL preferences, then valid weights are more likely to be directly accessed as conscious thought (Browne et a l 1997). Measurement models such as those of Lehman’s (1988) and Oliver’s (1991) have drawn attention to the fact that irrespective of objective measurement, it is important to know the respondent’s level of satisfaction or dissatisfaction as this is likely to indicate the level of motivation a respondent would commit to improving an area of life. An added advantage of the SEIQoL approach (O’Boyle, 1994) is that patients are asked to weight life areas, therefore indicating which areas of life may take precedence in rehabilitation programmes. Where respondents have unlimited needs, limited resources can be focussed not only on those areas of life that respondents are dissatisfied with but those areas of life that are important to clients. Standardised instruments which only measure dissatisfaction without a weighting system, could assume that dissatisfaction is associated with importance. However, this could be subject to response bias such as dissatisfied feelings that respondents are expected to have when unemployed.