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Powered by Taking Neuroleptics in New Zealand Miriam Larsen-Barr Supervised by Fred Seymour Co-supervised by Kerry Gibson Preliminary results of The Experiences.

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Presentation on theme: "Powered by Taking Neuroleptics in New Zealand Miriam Larsen-Barr Supervised by Fred Seymour Co-supervised by Kerry Gibson Preliminary results of The Experiences."— Presentation transcript:

1 Powered by 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

2 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

3 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.

4 Exploratory mixed methods self-report study Study 1: Anonymous, online survey. Study 2: In depth interviews.

5 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?

6 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

7 Four Sections: 30-45 minutes to complete 1.Demographics and Psycho-Social Factors 2.The Prescription Process 3.Taking Antipsychotic Medication 4.Discontinuation Attempts

8 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

9 Participant Demographics: N=150 Med 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…

10 Symptoms experienced Age of first onset ranged from 4 – 63 years-old Age of first prescription ranged from 10 – 63 years-old

11 Formal Diagnoses 89% reported receiving a formal diagnosis

12 Name of antipsychotic medication 98% 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

13 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%

14 Additional Approaches Used 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

15 Helpfulness of Additional Approaches 69% to 94% report finding additional options at least slightly helpful Top three = individual therapy (94%), PSW (92%) and Green Prescription (92%)

16 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

17 Most Recent Experiences of Taking AMs When were you most recently taking oral antipsychotic medication regularly?

18 Perceived Helpfulness of AMs 65% report finding AMs at least somewhat helpful 20% report finding them at least somewhat unhelpful

19 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

20 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 reported by 89% of participants

21 Disadvantages experienced …I couldn't connect with family or friends as I would have liked Disadvantages reported by 97% of participants

22 Impact of disadvantages on daily life 81% report at least a mild impact on their daily life 19% report no impact on their daily life

23 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.. 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

24 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

25 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 65% not currently taking AMs on a regular basis

26 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.

27 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 …?

28 Limitations Self selected sample Recruitment bias Self report measures Small sample Multiple medications Missing areas of information

29 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

30 Questions? Comments? … … Want a copy of these slides? Email

31 References Cooper, D., Moisan, J., Gaudet, M., Abdous, B., & Gregoire, J. (2005). Ambulatory use of olanzapine and risperidone: A population- based study on persistence and the use of concomitant therapy in the treatment of schizophrenia. Canadian Journal of Psychiatry, 50(14), 901. Gibson, S., Brand, S., Burt, S., Boden, Z., & Benson, O. (2013). Understanding treatment non-adherence in schizophrenia and bipolar disorder: A survey of what service users do and why. BMC Psychiatry, 13(1), 153. Harrow, M., & Jobe, T. (2007). Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications: A 15-year multifollow-up study. Journal of Nervous & Mental Disease, 195(5), 406. Humberstone, V., Wheeler, A., & Lambert, T. (2004). An audit of outpatient antipsychotic usage in the three health sectors of Auckland, New Zealand. Australian and New Zealand Journal of Psychiatry, 38(4), 240. Leucht, S., Corves, C., Arbter, D., Engel, R. R., Li, C., & Davis, J. M. (2009). Second-generation versus first-generation antipsychotic drugs for schizophrenia: A metaanalysis. Lancet, 373, 31. Leucht, S., Cipriani, A., Spineli, L., Mavridis, D., Orey, D., Richter, F.,... Davis, J. M. (2013). Comparative efficacy and tolerability of 15 antipsychotic drugs in schizophrenia: A multiple-treatments meta-analysis. The Lancet, 382(9896), 951. McKean, A., & Vella-Brincat, J. (2010). Regional variation in antipsychotic and antidepressant dispensing in New Zealand. Australasian Psychiatry, 18(5), 467. Morgan, V. A., Waterreus, A., Jablensky, A., Mackinnon, A., McGrath, J. J., Carr, V.,... Saw, S. (2012). People living with psychotic illness in 2010: The second Australian national survey of psychosis. Australian and New Zealand Journal of Psychiatry, 46(8), 735. Read, J., Cartwright, C., & Gibson, K., (2014). Adverse emotional and interpersonal effects reported by 1829 New Zealanders while taking antidepressants. Psychiatry Research, 216(1), 67. Waterreus, A., Morgan, V. A., Castle, D., Galletly, C., Jablensky, A., Di Prinzio, P., & Shah, S. (2012). Medication for psychosis - consumption and consequences: The second Australian national survey of psychosis. Australian and New Zealand Journal of Psychiatry, 46(8), 762. Wunderink, L., Nieboer, R. M., Wiersma, D., Sytema, S., & Nienhuis, F. J. (2013). Recovery in remitted first- episode psychosis at 7 years of follow- up of an early dose reduction/ discontinuation or maintenance treatment strategy: Long-term follow- up of a 2-year randomized clinical trial. JAMA Psychiatry (Chicago, Ill.), 70(9), 913.

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