Final outcome measures

A copy of the final outcome measures formatted into the baseline and follow-up questionnaire booklet can be found in Appendix L.

6.3.3.1 The Satisfaction with Information about Medication Scale (SIMS)

The Satisfaction with Information about Medication Scale (SIMS) is a 17 item measure which has been validated with a range of health conditions (Horne, Hankins, & Jenkins, 2001). The items in the SIMS are derived from Association of the British Pharmaceutical Industry (ABPI)

recommendations for the type of information patients require to facilitate safe self-management of medication. Participants rate each item as either ‘too much’, ‘about right’,

‘too little’, ‘none received’, or ‘none needed’. A total satisfaction rating (0-17) is obtained by summing the number of positive scores (about right or none needed) with higher scores indicating a greater degree of satisfaction. SIMS comprises two subscales; satisfaction with information about the ‘action and usage of medication’ and the ‘potential problems of medication’. The scale has shown good internal reliability (0.81 to 0.91) and satisfactory test-retest reliability (> 0.6) (Horne et al., 2001). SIMS has been previously used in a cross-sectional study investigating perceptions of information received by people with a bipolar disorder diagnosis (Bowskill et al., 2007).

6.3.3.2 The Brief Illness Perceptions Questionnaire (Brief-IPQ)

The Brief Illness Perceptions Questionnaire (Brief-IPQ) is a short-form of the Revised Illness Perceptions Questionnaire (IPQ-R) in which each dimension of illness perception is

represented by a single item (Broadbent et al., 2006). The Brief-IPQ has been described in Chapter 2. The brief-IPQ as adapted for previous bipolar research was used in this study (Clatworthy et al., 2009; Lobban, no date). The word “illness” in the questionnaire was

replaced by “bipolar”. In this 9-item version, five items assess cognitive illness representations of illness: consequences, timeline, personal control, treatment control, and identity (symptom experience). Two items assess emotional representations: concern about bipolar, and

emotional effects. One item assesses how much participants agree with their diagnosis. Each item is rated by participants on an 11 point scale (0-10) with higher scores reflecting

perceptions of more serious consequences, a chronic timeline, greater personal control, greater treatment control, many/severe symptoms, high concerns about illness and high negative emotional responses to illness. The B-IPQ demonstrates good reliability and construct validity (Broadbent et al., 2006) (Table 6.2).

6.3.3.3 Illness Perceptions additional sections on Identity & Causes

In order to provide more detailed information on participants perceptions of their illness, but without the use of the full IPQ-R (Moss-Morris et al., 2002), additional sections on causes and illness identity (acknowledging that participants may have received differing mental health diagnoses prior to their current diagnosis and may hold alternative explanations for their mental health issues).

Participants were presented with a list of mental health terms and asked to confirm if these had been used to describe their mental health problems. They were given space to also add in other terms which may have been used. For each term which has been used, they were asked to rate on a 5 point scale their level of agreement that the term described the experiences they have had. To gain a perspective on their current views about their mental health problems, there was an open-response box asking participants to write what term or label they felt best describes their mental health problems.

To assess perceptions of causes, participants were asked to rate their level of agreement on a 5 point scale (from strongly agree to strongly disagree) to 19 possible causes of bipolar. They were asked for their own views on possible causes rather than what health professionals, family or friends may have suggested. Participants were then asked to write the three most important causes of their mental health problems and were able to include other causes in addition to the pre-specified list. They were also asked to write three possible factors which in their view were responsible for maintaining their mental health problems.

6.3.3.4 Symptoms associated with bipolar questionnaire (SAQ)

In order to capture information on the type and severity of symptoms and side-effects participants were experiencing, the SAQ was included. This asks participants to endorse ‘yes’

or ‘no’ for whether they are currently experiencing a list of symptoms and side-effects associated with bipolar disorder. The list was compiled through consultations with the Consultant Psychiatrist in the research team as well as including items from the Glasgow Antipsychotic Side-effect Scale (GASS) (Waddell & Taylor, 2008). Space was also left for participants to add any additional symptoms they were experiencing. For items participants endorsed, they were asked to rate its severity on a 5 point scale from ‘Mild’ to ‘Very severe’

and then to select whether they thought the cause of the symptom was ‘Bipolar’, ‘Medication’,

‘Both’, ‘Neither’ or ‘Unsure’.

6.3.3.5 Internalized Stigma of Mental Illness Inventory (ISMI)

The Internalized Stigma of Mental Illness Inventory (ISMI) is a 29 item measure with five subscales; Alienation, Stereotype Endorsement, Discrimination Experience, Social Withdrawal and Stigma Resistance. The scale has been validated in mental health outpatient populations (Boyd Ritsher, Otilingam, & Grajales, 2003). A review identified that this measure was commonly used and had the highest internal consistency of a range of measures identified,

with the average being 0.85 (Livingston & Boyd, 2010). The ISMI has been used within a large scale European survey of people with BD or depression (Brohan et al., 2011).

The scale is scored by summing the answered items and dividing by the number of answered items, stigma-resistance items are reverse-coded. Higher scores indicate less internalised stigma and range from 1-4. Cut-offs have been defined in the literature for 4 categories (Lysaker, Roe, & Yanos, 2007) and 2 categories (Boyd Ritsher et al., 2003). ISMI has been demonstrated to have high internal consistency (r=0.90) and test-retest reliability (r=0.92) (Boyd Ritsher et al., 2003).

6.3.3.6 Clinical measures (Beck Depression Inventory (BDI-II) & Altman Self-Rating Mania Scale (ASRM))

The Beck Depression Inventory (BDI-II) (A. Beck, Steer, Ball, & Ranieri, 1996) is a 21 item scale for the measurement of depression severity which can be self administered and has shown good internal consistency (0.92) (A. Beck et al., 1988). The BDI-II has been recommended for its utility in measuring depression in people with a diagnosis of BD and distinguishing between depressive, manic and mixed episodes (Kumar, Rissmiller, Steer, & Beck, 2006). Each item is scored from 0-3 and scores are summed to produce a total score ranging from 0 to 63 with higher scores indicating more severe depression. Cut-offs have been defined as 0 -13 - minimal range; 14-19 - mild depression; 20-28 -moderate depression; and 29-63 - severe depression (Smarr & Keefer, 2011).

The ASRM is a 5 item scale measuring the presence and severity of manic symptoms and is compatible with DSM-IV criteria. ASRM is shorter than the alternatives; Young Mania Rating Scale (YMRS) (R. Young, Biggs, Ziegler, & Meyer, 1978), or the Clinician- Administered Rating Scale for Mania (CARS-M) (E. Altman, Hedeker, Janicak, Peterson, & Davis, 1994) and unlike these it is designed to enable self-administration, but correlates significantly with these other measures (E. Altman, Hedeker, Peterson, & Davis, 1997). Due to its good reliability (r = .86) and validity, ease of administration and imposing the least burden also in consultation with the Consultant Psychiatrist in the research team, this measure was selected. Each ASRM item is scored from 0 to 4, with total scores ranging from 0-16 with higher scores indicating higher probability of mania. Cut-offs have been defined as a score of 6 or higher indicating possible manic state (E. Altman et al., 1997).

Table 6.2: List of validated and adapted measures used in IBiD study

Type Measure Items/ Scoring Cronbach’s

alpha (published) Clinical The Beck Depression

Inventory (BDI-II) (A. T. Beck et al., 1996) 0-5: no indication of mania 6-20: possible manic state indicated

0.79

Treatment beliefs

The Beliefs about Medicine Questionnaire Specific (BMQ Specific) (Horne et al., 1999) adapted for BD

17 items

2 factor structure; Necessity, Concerns 5 point scale, Strongly agree – Strongly disagree (Mean score)

2 factor structure; Overuse, Harm 5 point scale, Strongly agree – Strongly disagree (Mean score)

0.63-0.74^a

Illness beliefs The brief Illness Perception Questionnaire (Broadbent et al., 2006)

8 items (+1 additional for BD) 10 point scale

Adherence Medication Adherence Report Scale (MARS) (Horne

& Weinman, 2004)

5 items

5 point scale - Always to never (summed)

0.67–0.90

Satisfaction The Satisfaction with Information about Medication Scale (SIMS) (Horne et al., 2001)

17 items

2 subscales ‘Action and Usage’, ‘Potential Problems’

Response categories – too much (0), about right (1), too little (0), none received (0), none needed (1) (summed)

0.81 - 0.91

Stigma Internalised Stigma of Mental Illness (ISMI) (Boyd Ritsher et al., 2003)

29 items

4-point scale, Strongly agree – Strongly disagree

5 subscales - Alienation, Stereotype Endorsement, Discrimination Experience, Social Withdrawal, Stigma Resistance.

Cut offs - 4-category method

1.00-2.00: minimal to no internalized stigma 2.01-2.50: mild internalized stigma

2.51-3.00: moderate internalized stigma 3.01-4.00: severe internalized stigma 2-category

1.00-2.50: does not report high internalized stigma

2.51-4.00: reports high internalized stigma

0.90

a Cronbach’s alpha for psychiatric sample across specific and general subscales.

b Cronbach’s alpha ranges across subscales.

6.3.3.7 Clinical and demographic data

Information was collected on clinical factors relating to participants diagnosis and previous psychiatric history, this is detailed in Table 6.3. These variables were selected, as potentially important moderating variables and were refined through consultation with the Consultant Psychiatrist in the research team. The following demographic information was collected; date of birth, gender, ethnic origin, marital status and highest level of education.

Table 6.3: List of clinical information collected at baseline

Variable Description

Diagnosis received Current diagnosis at recruitment

Diagnosis before admission Previous psychiatric diagnosis (if applicable) Age of bipolar diagnosis Age of first bipolar disorder diagnosis

Current hospital admission Was this admission voluntary or involuntary/detained?

Reason for current admission Participant’s view & information from notes.

Date of admission Date on which current admission commenced

Anticipated date of discharge Anticipated date of discharge (if known)

Number of previous psychiatric admissions Number of previous admissions (estimated by participant &

checked in notes by CSO)

Any voluntary admissions Yes/ No

Any involuntary/ detained admissions Yes/ No

Number of previous manic episodes Estimated number of episodes of mania Number of previous episodes of depression Estimated number of episodes of depression Any current psychotic symptoms? Yes/ No

Family history of bipolar Yes/ No/ Unknown

Physical health conditions Details of any co morbid health conditions

6.3.3.8 Acceptability of baseline questionnaire

In order to gather data on the acceptability of the baseline questionnaire a number of questions were included at the end of the questionnaire (see Appendix L). In addition, CSOs kept a note of any problems encountered during questionnaire completion and the researcher kept a record of any additional notes made by participants on their questionnaire.