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Taking Neuroleptics in New Zealand
Miriam Larsen-Barr
Supervised by Fred Seymour
Co-supervised by Kerry Gibson
Preliminary results of The Experiences of
Antipsychotic Medication Survey (TEAMS)
Making Sense of Psychosis Conference
Shifting the Korero
Auckland, 16 October 2014
Neuroleptic medications – Major tranquilizers
First-line intervention for psychosis in NZ best practice guidelines
Many uses: Beyond psychosis
Many types: Few significant differences between them
Background
Around 50% of Auckland CMHC service-users take neuroleptics
2% of general NZ population
International research shows … • Moderate symptom reduction • Adverse effects: cognitive, physical, emotional• Poorer long-term recovery rates and QOL outcomes• 30% – 60.5% discontinue within 1 year• Most relapse afterwards, but 26.7% – 54.5% do not• Individual outcomes vary.
Background
Exploratory mixed methods self-report study
Study 1: Anonymous, online survey.
Study 2: In depth interviews.
TEAMS Design
What is it like to take AMs?
What else do people taking AMs do to keep well?
What do people do when they stop taking AMs?
Research questions
Based on The Experiences of Antidepressants Survey
(Read, Cartwright, & Gibson, 2014)
Combined with • BMLSS for quality of life• MSPSS for satisfaction with social support • Brief Cope for coping style• Selected items from the Australian National Study
of High Impact Psychosis (SHIP)
Expanded in consultation with people who take antipsychotic medication
Survey Construction
Four Sections: 30-45 minutes to complete
1. Demographics and Psycho-Social Factors
2. The Prescription Process
3. Taking Antipsychotic Medication
4. Discontinuation Attempts
Survey Contents
NZ service-user and NGO networks
Recruitment was supported by the Mental Health Foundation of NZ, The Nutters Club, Hearing Voices Network Aotearoa, Changing Minds and Service-Users in Academia.
Plus One National Radio Interview
Participant Recruitment
Participant Demographics: N=150Med Status: 55% current regular use | 45% no current use
Gender: Male (37, 25%) | Female (110, 73%) | Other (3, 2%)
Age: 18-70 years-old
Ethnicity: Pakeha 89%, Maori 10%, Polynesian 3%, Other 6%
Highest level of education: • Did not complete high school (9, 6%)• Completed high school (16, 11%)• Diploma/certificate (52, 35%) • University degree (72, 48%)
Occupational Status: • Employed part time (39, 26%)• Employed full time (43, 29%) • Student (15, 10%) • Unemployed (18, 12%)• Other (34, 23%)
Psychiatric nurse, manager, teacher, clinical psychologist, counsellor, parent, artist, support worker, peer support worker, consumer advisor, customer service representative…
Symptoms experienced
Age of first onset ranged from 4 – 63 years-old
Age of first prescription ranged from 10 – 63 years-old
Symptom Frequency Percent (n=150)
Hallucinations 52 34%
Delusions 69 46%
Mania 74 49%
Depression 105 70%
Other 62 41%
Formal Diagnoses89% reported receiving a formal diagnosis
Diagnostic Label Frequency Percent (n=133)
Bipolar disorder 66 50%Depression 45 34%Schizophrenia 20 15%Posttraumatic stress disorder 20 15%Borderline personality disorder 19 14%Schizoaffective disorder 15 11%Anxiety 14 11%Psychosis (NOS/Drug-Induced) 8 6%Generalised Anxiety Disorder 8 6%Anorexia Nervosa 6 5%Obsessive compulsive disorder 5 4%Autism spectrum disorder 4 3%Social phobia/social anxiety 4 3%Agoraphobia 3 2%Dissociative identity disorder 3 2%Dysthymia 3 2%
Name of antipsychotic medication98% remembered the name of their current or most recent AM
• 2% taking both typical and atypical AMs• 75% also taking other mental-health meds• 11% have received a regular depot injection
91% Report Atypical Agents Frequency Percent
(n=147)Quetiapine 78 53%Olanzapine 29 20%Risperidone 24 16%Aripiprazole 10 7%Clozapine 6 4%Amisulpride 1 <1%9% Report Typical Agents
Haloperidol 5 3%Stelazine 4 3%Chlorpromazine 2 1%Flupenthixol 1 <1%Mellaril 1 <1%Neulactil 1 <1%Thiothixene 1 <1%
First prescription experiences • Compulsory treatment order: 24%
• Well-informed of the benefits and risks: 13% Moderately informed: 16% Slightly informed: 26% Not at all informed: 34%Do not remember: 11%
• Told to take it for… the rest of my life: 24%Until I felt better: 17%Between 1-12 months: 10%Over a year: 9%
• Offered alternative or additional options: 27% Not offered alternatives to consider: 62%Do not remember: 12%
Additional Approaches Used Approach Percent
Used
Individual therapy or counselling 92%
Relationship counseling/family therapy 39%
Drug and/or alcohol counseling 18%
Support group 62%
Community support worker 52%
Cultural support 15%
Peer Support Worker 32%
‘Green Prescription’ / exercise options 49%
Nutrition and dietary changes 55%
Vitamins/nutritional supplements 61%
Herbal remedies 45%
Meditation practices 59%
Respite service 39%
Anti-psychotics are only ONE part of my regime for managing my mental health...
97% had used at least one 74% used four or more
Helpfulness of Additional Approaches
Approach No. Used
Not Helpful
Slightly Helpful
Moderately Helpful
Very Helpful
Extremely Helpful
Individual therapy or counselling 138 6% 12% 16% 41% 25%
Support group 93 14% 16% 22% 31% 17%Vitamins/nutritional supplements 92 20% 24% 29% 15% 12%Meditation practices 89 15% 25% 16% 26% 19%Nutrition and dietary changes 83 20% 24% 23% 22% 11%Community support worker 78 13% 32% 17% 19% 19%‘Green Prescription’ / exercise options 74 8% 23% 22% 30% 18%Herbal remedies 68 28% 28% 26% 9% 9%Respite service 59 12% 15% 19% 27% 27%Relationship counselling/family therapy 58 31% 21% 26% 12% 9%Peer Support Worker 48 8% 29% 17% 33% 13%Drug and/or alcohol counselling 27 15% 19% 19% 15% 33%
Cultural support 22 18% 23% 9% 32% 18%
69% to 94% report finding additional options at least slightly helpfulTop three = individual therapy (94%), PSW (92%) and Green Prescription (92%)
Overall First Prescription Experiences…
A relief because maybe this would 'fix' it
Pretty confusing but it worked.
A nightmare
Relief because I needed to be released from the constant torment I was experiencing..
Disempowering, like being abused or raped with all your power taken from you.
A bit scary, but I was desperate … I also had a psychiatrist…who was caring, helpful and supportive of my fears.
34% report being satisfied or very satisfied with the prescribing experience.
• 20% Positive• 51% Negative • 17% Mixed
Most Recent Experiences of Taking AMs
When were you most recently taking oral antipsychotic medication regularly?
Time of Most Recent Regular Use Frequency Percent (n=150)
Taking at the current time 83 55%In the last year 13 9%2 years ago 17 11%3 – 5 years ago 12 8%More than 5 years ago 25 17%
Perceived Helpfulness of AMs
65% report finding AMs at least somewhat helpful20% report finding them at least somewhat unhelpful
Perceived effect on Quality of Life
69% thought AMs at least slightly improved their quality of life 23% thought AMs made their quality of life at least slightly worse
Benefits experienced
No longer have emotional torture … Sleep really well. Keeps the mania away, i.e. no hospital admissions. Enables me to work full time. Means I can have happy relationships …
My head did slow down a bit and I did sleep better.
Took the voices away and I describe it as they stay at the back of my head instead of occupying me a lot of the day…
Benefits PercentReduced Positive Symptoms 35%Increased Sleep 18%Calmer Mind/Clearer Thinking 17%Level Out Moods 15%Stopped Positive Symptoms 12%Improved Functioning 11%Reduced Anxiety 9%None 8%Reduced Unsafe Behaviour 6%Stability 5%Sedation 3%Improved Ability to Cope 3%Don't Know / Not Sure 3%
Benefits reported by 89% of participants
Disadvantages experiencedAdverse Effects Frequency PercentDrowsiness, feeling tired, sedation 121 81%Weight gain 103 69%Emotional numbing 79 53%Increased appetite 76 51%Loss of motivation 74 49%Feeling not like myself 74 49%Dry mouth 69 46%Loss of sex drive 66 44%Tremors 47 31%Withdrawal effects 44 29%Dizziness 39 26%Suicidality 24 16%Hypertension 15 10%Diabetes 10 7%No Disadvantages 5 3%Other Disadvantages 107 71%
…I couldn't connect with family or friends as I would have liked
Disadvantages reported
by 97% of participants
Impact of disadvantages on daily life
81% report at least a mild impact on their daily life19% report no impact on their daily life
In my life, AMs have been…
A life saver…I was crippled by anxiety and couldn’t
function.
A blessing and a curse.
Hell made me feel even more disconnected from my
environment then I was before…
A major relief from the monsters… For me they have saved my life..
The worst experience of my life… the most traumatic experience of my life.
A double edged sword. They help me with my bad experiences but they also take away the wind in my sails.
• 37% Positive • 30% Negative • 32% Mixed
Stopping antipsychotics 77% have thought about stopping
Of these… 91% have tried to discontinue at least once
Start another medication Wasn’t really given
any advice except being told that it was my choice
Don’t do it.
What advice were you given?
To taper the dose slowly
Maintaining Discontinuation
25% of those who made attempts last took AMs regularly over 5 years ago 11% last took them regularly 3-5 years ago
Time off meds Frequency Percent (n=105)
Less than a month 28 27%
1 – 6 months 16 15%
6 – 12 months 7 7%
More than a year 54 51%
65% not currently taking AMs on a regular basis
Further comments… It helped get me through a
tough time when nothing else seemed to be working
I wonder if they work as I seem to have keep taking
more or adding other meds and not much changes.
Just that the stigma around taking them in society is all too real and unfounded.
They can be worse than torture. Invisible handcuffs.
… Sometimes they are essential.
.…They put me in a position where I can achieve a good quality of life, provided that I am using a lot of other strategies, actively dealing with my trauma, and learning more about myself.
…should be used for short periods only and a range of… ways to live life well
without "maintenance" doses needs to be the norm.
Feedback emails… ... my partner was taking them … for his severe depression...
He committed suicide....
Thank you … for at last researching … the effects of anti-psychotic medication … over the years we had no voice
…I am surprised that this type of survey has not gone
out to family members. Why only include the users of
antipsychotic medication?...
My son was prescribed Olanzapine and committed
suicide after tapering...
Do you anticipate surveying families about their
experiences …?
Limitations
Self selected sample
Recruitment bias
Self report measures
Small sample
Multiple medications
Missing areas of information
Preliminary Conclusions 1. AMs can be like lifesavers or nightmares and
it’s rarely all good or all bad: Experiences are complex, and can vary across people and time
2. The prescribing process often lacks informed consent: AMs are one of many options that can be helpful, but other options are not usually offered.
3. It is common to think about and attempt stopping: Trying to stop can be risky but maintained discontinuation is possible.
4. Those who prefer to not to take AMs have unmet support needs
5. People want to talk about this
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