TIPOS DE VÁLVULAS

The goal of the Washington Psychosocial Seizure Inventory (WPSI) is to provide 'an economic, systematic and objective evaluation of the extent of psychosocial problems in areas important for epileptics' (Dodrill et al., 1980). However, the WPSI is not strictly a QOL measure. It is included here as it is one of the few scales developed specifically for use in patients with epilepsy and it addresses the impact of the illness on the patients psychosocial functioning. In addition, it has been widely used (Batzel et al., 1980; Dodrill, 1980a; Dodrill, 1980b; Dodrill, 1983; Dodrill and Clemmons, 1984; Dodrill, Beier et al., 1984; Dodrill, Breyer et al., 1984; Flanagan and Beran, 1985; Fraser et al., 1986; Tan, 1986; Dodrill, 1986; Warner et al., 1989).

The WPSI is a 132-item questionnaire covering 7 areas of functioning: family background, emotional adjustment, interpersonal adjustment, vocational adjustment, financial status, adjustment to seizures and medical management. Examples of questions from each area can be found in Table 3.10. Each item requires a 'Yes' or 'No' response about the self-perceived usual feelings and actions of the respondent. An overall psychosocial functioning score can be calculated. In addition 3 validity scales are included (number left blank scale; lie scale; rare item scale). These scales were designed to determine the acceptability of any completed WPSI. It is

Table 3.10: Example items from WPSI AREA

Family Background

ITEM

Did you feel secure in the home in which you grew up?

As a child, did you have trouble making friends? Emotional Adjustment Interpersonal Adjustment Vocational Adjustment Financial Status Adjustment to Seizures

Medicine and Medical Management

Are you generally free from depression?

Are you often tense and anxious? Are you usually able to think clearly?

Do you have trouble meeting people? Do you enjoy social gatherings? Do you feel at ease around people of the opposite sex?

Have you ever lost a job because of your seizures?

Are you satisfied with your employment situation?

Is transportation a problem?

Do you have sufficient money for basic needs?

Do you feel financially secure? Can you afford your present living arrangement?

Do you feel resentful that you have seizures?

Are you comfortable going out despite possible seizures?

Do you have trouble accepting your seizure problem?

Do you like your doctor?

Do you feel your doctor really cares about you as a person?

Do you feel your seizures are being controlled as well as they can be? Do you frequently have trouble remembering to take your medications?

recommended that any completed inventory is invalid if more than 10% of items are left blank (that is, not completed), if the lie scale score is greater than 4 and if more than 5 rare items are endorsed (17 rare items are identified based on those items endorsed by less than 15% of patients in validation studies). A profile form is available onto which the raw scores for each area are plotted. The profile indicates how the respondent is functioning in relation to 4 regions: Region 1, no significant problems; Region 2, possible problems, but of limited significance; Region 3, distinct difficulties with definite adjustment significance and; Region 4, severe problems having a striking impact upon adjustment. These regions were based on the professional ratings for each area (and therefore do not allow an assessment of how the respondent feels an area is affected). An Adolescent Psychosocial Seizure Inventory (APSI, Batzel et al., 1987; Batzel et al., 1988) and a Spanish translation of the WPSI

(Tiberia and Froman, 1986) are also available.

Internal reliability of the WPSI was assessed in 127 patients using the split-half method. Coefficients were generally high ranging from 0.92 (emotional adjustment) to 0.68 (medical management). An exception was the Rare Items Validity Scale with a coefficient of 0.37. Test-retest reliability was assessed in a sub-group (n=21) who completed the WPSI on two occasions with an interval of 30 days. For the clinical scales test-retest coefficients ranged from 0.66 (medical management) to 0.87 (financial status). The validity scales showed lower correlations (no blank, 0.28; lie scale, 0.58; rare items, 0.58) (Dodrill et al., 1980).

The validity of all WPSI scales was measured by the association between the WPSI scores and professional ratings (n=127). Correlations were high, ranging from 0.58 (medical management) to 0.73 (overall psychosocial functioning)

(Dodrill et al., 1980).

There appears to be little published evidence of the sensitivity of the WPSI in detecting change over time. Apart from the 1980 publication, there does not appear to have been much published work conducted to provide additional evidence of the psychometric properties of the WPSI. This is surprising

in view of the wide use of this scale to define psychosocial problems in patients with epilepsy (Dodrill, 1983; Dodrill, Breyer et al., 1984; Dodrill, Beier et al., 1984; Tan, 1986) and to examine the influence of epilepsy-related and other variables to psychosocial functioning (eg. Dodrill, 1984; Dodrill, 1986). Some of the studies do provide further evidence of the validity of the WPSI, but this is not done in any systematic manner. For example, Batzel et al. (1980) demonstrate the ability of the vocational adjustment scale to differentiate between fully employed, underemployed and unemployed groups of people with epilepsy. This supports the validity of this scale of the WPSI.

While the WPSI covers many of the areas of life functioning that are considered important to the assessment of QOL, it does not attempt to evaluate the subjective nature of the ability to function (or not) within these areas and is thus not acceptable as a true measure of QOL. As Barofsky (1984) succinctly states: 'if one uses the definition of quality that Donabedian proposes, then the task for someone doing a quality of life assessment is to compare the patients current status with some ideal state. This judgement task is different from what is ordinarily asked of patients in most psychosocial assessments. As a result, psychosocial assessments are not necessarily quality of life assessments'. The WPSI attempts to objectively define psychosocial problems in patients with epilepsy. While it purports to be based on a patients self-perceptions of usual feeling and behaviours (Dodrill et al., 1980), it does not allow the patient to subjectively evaluate the impact that their psychosocial functioning/abilities have on their day to day lives or QOL. 3 . 3.i New Scales

Since this research project was initiated there have been a number of interesting QOL instruments developed, particularly in the epilepsy realm. While these were not available for use at the time, a review of current measures would be incomplete without a mention of these more recent additions to the armoury of QOL assessment methods.

Within the field of epilepsy, three groups of workers (1 in Britain and 2 in the United States) have been developing

QOL scales aimed specifically at patients with epilepsy. The Liverpool initiative (Baker, Smith et al, 1993) have adopted a battery approach incorporating both existing and specifically developed measures. The QOL model employed by this group incorporates physical, social and psychological aspects of the individual. Three novel scales have been developed: a Seizure Severity Scale (Smith et al., 1991; Baker et al., 1991), an Impact of Epilepsy Scale (Jacoby et al., 1993) and a Life Fulfilment Scale (Baker, Jacoby et al., 1993) . This approach has been successfully used to examine the effects of antiepileptic treatment of the quality of life of patients with epilepsy (Smith et al., 1993). This approach has a number of advantages: 1) it has been developed and tested specifically on patients with epilepsy; 2) it has been developed in Britain; 3) the Life Fulfilment Scale attempts to incorporate an assessment of the patients 'ideal' life situation. On the negative side the use of a battery of tests precludes an individualised assessment of areas of importance and it makes no attempt to address the comparative nature of the QOL concept (for example, comparing current situation with past abilities or peer group).

The Epilepsy Surgery Inventory (ESI-55, Vickrey et al., 1992; Vickrey, 1993) has been developed in the USA specifically to assess changes in QOL following epilepsy surgery. It is a self-report measure covering 11 dimensions of health related QOL. It consists of a generic core of 35 items (covering 8 dimensions: general health perceptions, energy/fatigue, social function, emotional well-being, role limitations due to emotional problems, physical function, role limitations due to physical problems, pain) based on the RAND 36-item Health Survey (Ware and Sherbourne, 1992). This is supplemented by 19 epilepsy-specific items covering 3 dimensions (cognitive function, role limitations due to memory problems and overall Q O L ) . In addition, the scale includes 1 item relating to change in health.

The Quality of Life in Epilepsy (QOLIE) project is a USA- based, multicentre study which began in late 1991 (Perrine, 1993) . Its aim was to develop and validate an epilepsy specific inventory for patients with mild to moderate

epilepsy. The test battery is based on the EPI-55, but expanded to have a broader application. It consists of 98 items, with the RAND 36-item Health Survey forming a generic core to which epilepsy-specific items have been added (based on a literature review and expert opinion as to the areas of importance to people with mild to moderate epilepsy). The epilepsy-specific items added cover 10 dimensions: seizure specific health perceptions, worry about seizures, attention and concentration, memory, language, working and driving limitations, medication effects, social support, social isolation and overall QOL.

In addition, a number of scales have been developed which attempt to address the individual nature of QOL and, although not specifically designed for patients with epilepsy, warrant a mention here. The first of these, SBQOL (Dunbar and Stoker, 1992) uses a limited application of repertory grid techniques and was developed primarily to assess QOL in psychiatric patients. 28 items are included covering the following domains: sense of psychic well-being, physical well-being (particularly pain and mobility), social relationships, activities/hobbies/interests; mood, locus of control, sexual function, work/employment, religion and finances. Patients are asked to rate (on a digitalised visual analogue scale) their current situation (self-now) and their ideal situation (ideal- self) . Scoring is based on comparing these two states.

An interesting approach to assessing individualised QOL based on Judgement Analysis has been developed in Ireland (McGee et al., 1991). The method uses five patient-elicited areas of importance to QOL (ELICITED CUES) and 5 provided areas (PROVIDED CUES: physical function, emotional function, social function, living conditions, general h e a l t h ) . Patients are asked to make judgements about the QOL of hypothetical scenarios based on these areas. A visual analogue scale is used with the ends labelled 'as good as it could possibly be' and 'as bad as it could possibly be'. This method has been employed in a number of populations including healthy volunteers, gastroenterology patients and rheumatoid arthritis patients.

The WHOQOL is an initiative by the World Health Organisation to produce a cross-culturally valid, generic QOL instrument (Orley, 1991; Orley, 1992; Sartorius, 1993). It is envisaged that a core instrument will be supplemented by modules designed for use with specific groups (for example, cancer patients, refugees, the elderly, specific diseases). The proposed structure of the WHOQOL incorporates 5 domains: physical health (general health, pain and discomfort, energy and fatigue, sexual activity, sleep and r e s t ) , psychological health (positive affect, sensory functions, thinking,

learning, memory, concentration, self-esteem, bodily-image and appearance, negative affect), level of independence (mobility, ADL, dependence of substances, communication capacity, work c a p a city), social relationships (intimacy, loving relationships, practical social support, activities as a provider/supporter), environment (physical safety and security, home environment, work satisfaction, financial resources, accessability and quality to health and social care, opportunities for acquiring new information and skills, participation in recreation/leisure activities, physical environment (pollution, noise, traffic, climate), transport). Other domains which may be incorporated include spirituality, religion and personal beliefs. A pilot version is currently undergoing testing in field centres in Australia, Croatia, India, Netherlands, Panama, Russia, Thailand - Britain, United States and Zimbabwe. The final version is expected to be completed by 1994.