Need for the intervention – an assessment of baseline measures

The baseline measures for the whole sample (n=29) on information dissatisfaction, treatment and illness perceptions and internalised stigma provide an assessment of the need for an intervention.

6.6.2.1 Beliefs about illness 6.6.2.1.1 Brief IPQ

Table 6.6 presents the results from the Brief IPQ, and it can be seen that beliefs in personal control over BD were low (Mdn=4, IQR=3-7). BD had a severe effect on participants lives (Mdn=8, IQR=7-10) and strong emotional consequences (Mdn=7, IQR=5-9).

The proportion of participants who reported higher or lower beliefs in the Brief IPQ items was calculated to provide an indication of how many participants might have beliefs not conducive to adherence. 62% reported low personal control, 62% experience higher levels of symptoms, 69% reported higher feelings of emotional affect due to bipolar and 59% reported higher levels of concern. 31% were judged to have acute timeline beliefs, 31% reported low treatment control and 31% report lower levels of understanding. Twenty-one percent reported low agreement with their diagnosis.

Table 6.6: Brief-IPQ descriptive statistics (n=29)

IPQ item Mean (sd) Median Consequences - How much does bipolar affect

your life?

7.53 (2.76) 8.00 (7-10)

5 (17.2) 24 (82.8) Timeline - How long do you think your bipolar

will continue?

7.45 (3.09) 8.00 (5-10)

9 (31.0) 20 (69.0) Personal control - How much control do you feel

you have over your bipolar?

4.53 (3.10) 4.00 (3-7)

18 (62.1) 11 (37.9) Treatment control - How much do you think

your treatment can help your bipolar?

6.97 (2.67) 7.00 (5-9)

9 (31.0) 20 (69.0) Identity - How much do you experience

symptoms from bipolar?

6.07 (3.32) 7.00 (4-9)

11 (37.9) 18 (62.1) Concern - How concerned are you about your

bipolar?

6.26 (3.24) 6.00 (5-9)

12 (41.4) 17 (58.6) Understanding - How well do you understand

your bipolar?

6.62 (3.35) 7.00 (4-10)

9 (31.0) 20 (69.0) Emotional response - How much does your

bipolar affect you emotionally? (e.g. does it make you angry, scared, upset?)

6.59 (3.16) 7.00 (5-9)

9 (31.0) 20 (69.0)

Identity - How much do you agree with your diagnosis?

7.39 (3.31) 8.00 (7-10)

6 (21.4) 22 (78.6)

6.6.2.1.2 Illness Identity

In terms of BD identity, almost all (93%) participants reported that the term Bipolar Disorder had been used to describe their mental health problems. The terms used are presented in Table 6.7 and the number of terms used to describe participants mental health problems ranged between 2 and 7, most participants had four or five terms applied (n=8 for both four and five terms).

Participants generally agreed with the terms applied to their mental health problems. Only five out of 27 disagreed or were uncertain about whether the term Bipolar Disorder applied to them. Seven participants (out of 19) who had had the term Mania applied to them disagreed or were uncertain about this. Six (out of 16) who had had the term Psychosis applied to them disagreed or were uncertain about this. In terms of participants own definitions of their mental health problems, 19 participants stated ‘Bipolar’/ ‘Bipolar Disorder’/ ‘Manic Depression’, three stated ‘Depression’. Other non-diagnostic terms used included; ‘physical ailments – no mental health problems’, ‘Vulnerable’, ‘Extra sensory perception’ and ‘Grieving issues’ (all n=1).

Table 6.7: Terms used by HCPs to describe participants mental health problems (n=29)

Term n (%)

Bipolar disorder 27 (93.1)

Depression 20 (69.0)

Anxiety 20 (69.0)

Mania 19 (65.5)

Psychosis 16 (55.2)

Manic Depression 13 (44.8)

Schizoaffective 4 (13.8)

Other ^a 11 (37.9)

a Borderline personality disorder, 'Traits' only, High, Hypomania, Mental illness, Paranoia, Religious mania, Schizoidpremature child, Schizophrenia - past diagnosis, Obsessive Compulsive disorder, Stress (n=2).

6.6.2.1.3 Perceived cause of BD

The most frequently endorsed prompted causes of participants BD (Table 6.8) were stress or worry (n=27) and family problems or worries (n=24). Participants identified the most

important causes of bipolar for them (up to three), the most common were; Stress/ anxiety/

worry (n=16), Family/ relationship issues (n=9), Emotional state (n-9). The most important maintaining factors were Stress/ worry (n=11), Poor healthcare/ support from professionals (n=8), Stopping/ remembering medication (n=5) and Negative thinking/ over thinking (n=5).

Table 6.8: Participants agreement with causes of their BD Agree n (%)

Uncertain n (%)

Disagree n (%)

Stress or worry 27 (93.1) 2 (6.9) -

Family problems or worries 24 (82.8) 1 (3.4) 4 (13.8)

My emotional state e.g. feeling down, lonely, anxious 20 (69.0) 1 (3.4) 8 (27.6)

Hereditary it runs in my family 18 (62.1) 4 (13.8) 7 (24.1)

Overwork 18 (62.1) 2 (6.9) 9 (31.0)

My personality 17 (58.6) 4 (13.8) 8 (27.6)

Chemical Imbalance 16 (55.2) 10 (34.5) 3 (10.3)

My mental attitude e.g. thinking about life negatively 12 (41.4) 3 (10.3) 14 (48.3)

My own behaviour 11 (37.9) 5 (17.2) 13 (44.8)

Chance or bad luck 9 (32.1) 1 (3.6) 18 (64.3)

Pollution in the environment 8 (27.6) 2 (6.9) 19 (65.5)

Ageing 7 (24.1) 4 (13.8) 18 (62.1)

Alcohol 6 (21.4) 2 (7.1) 20 (71.4)

Diet or eating habits 5 (17.2) 2 (6.9) 22 (75.9)

Accident or injury 5 (17.2) 4 (13.8) 20 (69.0)

Recreational drugs e.g. cannabis, cocaine, ecstasy 4 (13.8) 4 (13.8) 21 (72.4)

Poor medical care in my past 3 (10.3) 4 (13.8) 22 (75.9)

Smoking 2 (6.9) 3 (10.3) 24 (82.8)

A Germ or virus 1 (3.4) 3 (10.3) 25 (86.2)

Table 6.9: Medications prescribed at baseline n (%) Atypical anti-psychotics 25 (86.2)

Mood stabilisers 20 (69.0)

Benzodiazepines 10 (34.5)

Sleeping tablets 6 (20.7)

Typical anti-psychotics 4 (13.8)

Anti-depressants 4 (13.8)

Other medications 2 (6.9)

SSRI 1 (3.4)

SNRI 1 (3.4)

6.6.2.2 Medications prescribed at baseline

Participants were prescribed, a median of three medications at baseline (IQR=2-3). The most commonly prescribed medications were two atypical anti-psychotics (ATAP) Quetiapine and Olanzapine (n=11 for both). Twenty-five participants were prescribed ATAPs and 20 were

prescribed mood stabilisers (most commonly Valproate, n=10) (Table 6.9). Some participants were prescribed more than one type in any one class of medication For example two ATAP, mood stabilisers or two or more Benzodiazapines.

6.6.2.3 Beliefs about treatment

6.6.2.3.1 General beliefs about medication

The BMQ general scales demonstrated adequate reliability in this sample at baseline (Overuse scale α=.70, Harm scale α=.68). Participants’ general beliefs about medication at baseline demonstrated high levels of Overuse beliefs, 23 (79%) reported high beliefs about the overuse of medicines and the mean score was 3.75 (SD 0.98) out of a maximum score of 5. Levels of general harm beliefs about medication were lower, only seven (24%) participants reported high harm beliefs the mean score was 2.64 (SD 0.75) out of a maximum score of 5.

6.6.2.3.2 Practical barriers to taking medication

Almost all participants reported at least one practical obstacle to taking medication (n=27).

Twelve participants reported experiencing four or more obstacles, the most common were; to get the best from their care team (52% always, often or sometimes find it difficult), and to remember to take their medication when their daily routine changes (48% sometimes or often find it difficult) (Table 6.10).

6.6.2.3.3 Specific beliefs about medication prescribed for BD

Due to the variability in medication regimens and the fact that participants were often taking more than one medication within a particular class, BMQ necessity and concerns scores for the most commonly prescribed medications are presented (Table 6.11).

Twenty-three (79.3%) participants had low necessity beliefs about at least one medication they were prescribed, 19 (65.5%) had high concerns about at least one medication. The average number of medications with high concerns was 2 (IQR=0-3) and with low necessity was 2 (IQR=0.5-3). 38% of participants had high concerns and the same proportion had low necessity beliefs about all of the medications they were prescribed.

Table 6.10: BMQ Practical barriers n (%) I find it difficult to remember to take my

medication when my daily routine changes

- 1 (3.7) 12 (44.4) 2 (7.4) 12 (44.4)

I find it difficult to remember to take my medication when my regimen (treatment plan) changes

- 1 (3.7) 6 (22.2) 8 (29.6) 12 (44.4)

I find it difficult to keep track of when I need to take each medicine

- 1 (3.6) 6 (21.4) 6 (21.4) 15 (53.6)

I find it difficult to remember to take my medicines every day

- - 3 (10.7) 7 (25.0) 18 (64.3)

I find it difficult to cope with the costs of medicines

2 (6.9) 2 (6.9) 1 (3.4) 3 (10.3) 21 (72.4)

I find it difficult to know when to get a further supply when my prescription runs out

- 2 (7.7) 5 (19.2) 3 (11.5) 16 (61.5)

I find it difficult to travel or go on holidays 4 (14.3) 2 (7.1) 4 (14.3) 2 (7.1) 16 (57.1) I find it difficult to swallow my tablets 3 (10.3) 1 (3.4) 3 (10.3) 4 (13.8) 19 (62.1) I find it difficult to get the best from my care

team

3 (10.3) 4 (13.8) 8 (27.6) 5 (17.2) 9 (31.0)

I find it difficult to get information about my medicines

2 (6.9) 3 (10.3) 5 (17.2) 5 (17.2) 14 (48.3)

Table 6.11: BMQ necessity and Concerns beliefs for the most commonly prescribed medications High necessity

6.6.2.4 Adherence to medication (VAS & MARS)

The median percentage of medications taken (VAS) ranged between 90-100% (IQR=80-100) (See Table 6.12 for average MARS scores). The MARS data for the most commonly prescribed medications (prescribed to ten or more participants),showed that 60% of participants were classified as having high adherence (a score of 23 or more) to Benzodiazepines, 64% to Valproate, and 71% to Lithium. Thirteen participants had low MARS adherence scores for at least one medication they were prescribed. Two participants had low adherence for three medications.

Table 6.12: MARS median scores for most common medications prescribed

n Mdn (IQR)

Valproate 11 24 (21-25)

Quetiapine 11 25 (25-25)

Olanzapine 11 25 (23-25)

Lithium 7 24 (22-25)

Sleeping tablets 6 25 (21-25)

6.6.2.5 Symptoms and side-effects experienced

Commonly experienced symptoms or side-effects included restlessness (n=25), difficulty concentrating (n=23), feeling apprehensive, fearful or anxious (n=22), dry mouth (n=21), and tiredness (n=21) (Table 6.13). Participants reported experiencing a median of 15 symptoms (IQR=10-19), and a median of 12 at a moderate to severe level (IQR=6-15). In terms of symptom attribution more symptoms were attributed to medication (median 8, IQR=3-12), than to BD (median 5, IQR=1-7). Common symptoms attributed to medication experienced at a moderate to severe level were dry mouth (n=10), tiredness (n=10) and sedation (n=10).

Table 6.13: Symptom reporting

Median (IQR)

Total number of symptoms reported 15 (10-19)

Total number of symptoms reported (Moderate to very severe) 12 (6-15) Total number of symptoms attributed to BD 5 (1-7) Total number of symptoms attributed to medication for BD 8 (3-12) Total number of symptoms with unknown attribution 0 (0-1)

6.6.2.6 Satisfaction with information about medication

Both SIMS subscales demonstrated good reliability (Action and Usage α=.868, Potential problems of medication α=.809). Median SIMS scores were 7 (IQR=2-12) out of a possible 17 (higher scores indicating greater degree of satisfaction). For the Action and Usage subscale the median was 4 (IQR=2-8) and for the Potential Problems was 3 (IQR=1-5) (Table 6.14). Overall 59% (n=17) of participants were satisfied with less than 9 items and 72% (n=21) were satisfied with less than five of the Potential Problems items.

Looking at individual SIMS items, highest levels of dissatisfaction were reported in ‘Whether the medicine will interfere with other medicines’ (n=23), ‘Whether the medication will affect your sex life’ (n=21) (Table 6.15).

Table 6.14: Mean and median SIMS scores

Mean (sd) Median (IQR)

SIMS Score 7 (5) 7 (2-12)

SIMS Action & Usage scale 4 (3) 4 (2-8)

SIMS Potential problems of medication scale 3 (2) 3 (1-5)

Table 6.15: Proportion of participants satisfied and dissatisfied with SIMS scale items Dissatisfied n (%)

Satisfied n (%) Whether the medicine will interfere with other medicines 23 (79.3) 6 (20.7) Whether the medication will affect your sex life 21 (72.4) 8 (27.6)

How long you need to be on the medicine 20 (69.0) 9 (31.0)

Whether the medicine will have any unwanted effects (side effects) 20 (69.0) 9 (31.0)

How you can tell if they are working 19 (65.5) 10 (34.5)

What are the risks of you getting side effects 19 (65.5) 10 (34.5)

What you should do if you experience unwanted side effects 19 (65.5) 10 (34.5)

How long they take to act 18 (62.1) 11 (37.9)

What these medicines are for 17 (58.6) 12 (41.4)

How they work 17 (58.6) 12 (41.4)

What you should do if you forget to take a dose 16 (55.2) 13 (44.8)

Whether the medication will make you feel drowsy 15 (51.7) 14 (48.3) If you can drink alcohol whilst taking this medicine 13 (44.8) 16 (55.2)

What they do 12 (41.4) 17 (58.6)

What the medicines are called 10 (34.5) 19 (65.5)

How to use them 10 (34.5) 19 (65.5)

How to get a further supply 9 (31.0) 20 (69.0)

6.6.2.7 Internalised stigma (ISMI)

The ISMI scale and subscales demonstrated adequate to good reliability (ISMI 29 items α=.865, ISMI 24 items excluding Stigma Resistance α= 929, ISMI Alienation α=.892, ISMI Stereotype Endorsement α=.851, ISMI Discrimination Experience α=.745, ISMI Social Withdrawal α=.829, ISMI Stigma Resistance α=.698). Only around one quarter of participants reported at least moderate internalised stigma (using the 24 item scale) (n=8). However, for the subscales, 45%

reported moderate or severe ‘Alienation’, 48% moderate or severe ‘Discrimination Experience’

(Table 6.16).

Table 6.16: Responses to the ISMI scale – levels of internalised stigma Minimal to none

n (%)

Mild n (%)

Moderate n (%)

Severe n (%)

ISMI score 10 (34.5) 12 (41.4) 7 (24.1) -

ISMI score (excluding Stigma resistance subscale)

9 (31.0) 12 (41.4) 7 (24.1) 1 (3.4)

ISMI Alienation 10 (34.5) 6 (20.7) 11 (37.9) 2 (6.9)

ISMI Stereotype Endorsement 22 (75.9) 6 (20.7) 1 (3.4) -

ISMI Discrimination Experience 6 (20.7) 9 (31.0) 10 (34.5) 4 (13.8)

ISMI Social Withdrawal 12 (41.4) 8 (27.6) 9 (31.0) -

ISMI Stigma Resistance 20 (69.0) 7 (24.1) 2 (6.9) -

6.6.3 Feasibility of the IBiD RCT

In document Medication adherence in bipolar disorder: Understanding patients’ perspectives to inform intervention development (Page 191-198)