Duration of Untreated Psychosis (DUP) Measurement

1. Duration of Untreated Psychosis (DUP) Measurement Jo Smith Worcestershire EI Service Study day 9th June 2011

2. Importance of DUP for Outcomes • Crow et al (1986): first-admission patients with SZ with DUP > 1y more likely to relapse than those with DUP < 1y • Longer DUP is associated with: • Psychosocial decline (Jones et al, 1993) • Prolonged morbidity (Wyatt et al, 1997) • Increased treatment costs (Moscarelli et al, 1991) • Worse course and outcome (Helgason, 1990; Haas et al, 1998; Larsen et al, 2000; Altamura et al., 2001; Black et al., 2001; Malla et al., 2002) • Increased duration of the acute episode (Loebel et al, 1992; McGorry et al, 1996)

3. Critical Period and DUP The’ critical period’ hypothesis proposes that in the early phase of a psychosis there is: • A plateau effect of psychopathology and disability • The development of influential biological, psychosocial and cognitive factors • The beginnings of desynchrony between clinical and social functioning A shorter DUP gives a longer critical period within which to intervene and influence these processes

4. Benefits of keeping DUP short • Prevention of neurobiologically “toxic” effect of psychosis (Wyatt et al, 1997) • Recent work does not support this (Hoff et al, 2000; Fannon et al, 2000; Normal et al, 2001) • Prevention of psychosocially toxic effect of psychosis • Some evidence in support of this

5. DH National Mental Health Minimum Data Set: DUP requirements (from 1/4/11) • For every patient seen within specialist psychosis (including EI) Services • Collect quarterly from 1st April 2011 • First quarter return delayed to September 2011 to allow information system set up • Relevant information to be taken from referrals database on ‘M’ drive to be reported as part of NMHDS return from Trust Information Dept • Expansion from current single DUP rating (in months) to include 5 additional data points:

6. NMHMDS data points • Prodrome psychosis date: • Date at which first noticeable change in behaviour or mental state prior to emergence of full blown psychosis • Emergent psychosis date: • Date at which there was evidence of a positive psychotic symptom for the patient regardless of its duration ( symptom would rate 4 ‘moderate’ or above on PANSS) • Manifest psychosis date: • Date at which a positive symptom has lasted for a week for the patient (usually 7 days after the date of the first psychotic symptom) • Psychosis prescription date: • Date the patient was prescribed anti-psychotic medication • Psychosis treatment start date: • Date the patient commenced prescribed anti psychotic medication and was compliant for at least 75% of time during subsequent month (using clinical judgement and usually same as date of psychosis prescription)

7. Duration of Untreated Psychosis (DUP) • Commonly defined as the time interval between onset of definite positive psychotic symptoms and first appropriate treatment (usually defined as first anti-psychotic treatment but where not on medication can use engagement and treatment in an EI service) • Singh et al: Nottingham Onset Schedule (NOS) DUP measurement version identified ‘psychosis onset’ as comprising: • Prodrome (MHMDS:‘Psychosis Prodrome’ date) • First psychotic symptom (MHMDS:‘Emergent Psychosis’ date) • Definite Psychosis (MHMDS:‘Manifest Psychosis’ date)

8. Concept of Onset in NOS Definite diagnosis First psychotic symptom Prodrome

9. Concept of Onset (Singh et al) • Prodrome: Date at which the first noticeable changes in behaviour or mental state occurred before the emergence of frank psychotic symptoms. Prodromal symptoms usually include trouble sleeping, poor attendance/performance at school/work, withdrawal from friends/family, attenuated psychotic symptoms (suspiciousness, whisperings or occasionally hearing name called, slight confusion in thinking). There should be a clear deterioration in functioning from previous levels and no return to premorbid functioning following onset of prodromal symptoms. • First Psychotic symptom: Date at which there is first clear evidence for the presence of a positive psychotic symptom (delusion, hallucination or thought disorder) which would score 4 or more (moderate or above) on PANSS, regardless of its duration. • Definite Diagnosis: Date at which there is clear evidence of a positive psychotic symptom (delusions, hallucinations, first rank symptoms, catatonic symptoms or negative symptoms) that has lasted for at least one week. This date is usually the date 7 days after the date of onset of the first psychotic symptom.

10. Duration of Untreated Psychosis(DUP) DUP = length of time between: • Date at which a positive psychotic symptom has lasted for a week for the patient, usually 7 days after onset of first psychotic symptom (manifest psychosis date) • Date commenced prescribed antipsychotic medication and thereafter was compliant for 75% of time during subsequent month (psychosis treatment start date)

11. Duration of Untreated Illness (DUI) DUI= length of time between: • Date of onset of non specific changes in behavior or mental state prior to emergence of a positive psychotic symptom which would be rated as 4 ( moderate or higher) on PANSS (prodrome psychosis date) • Date commenced prescribed antipsychotic medication and thereafter was compliant for 75% of time during subsequent month (psychosis treatment start date)

12. Information gathering • Simple concept, can be more difficult in reality • Sources of information: • Client • Family/significant others report • Medical notes • Assessment measures (mental state assessment, premorbid adjustment scale, pathways to care etc) • Should calculate DUP within 3 months of acceptance onto caseload • Construct timeline of major life events and changes in thoughts, behavior and feelings (similar to constructing a relapse signature timeline) • Can use early signs cards or a checklist of common symptoms and changes as prompts/cues to jog memory

13. DUP Interview (Nottingham Onset schedule : NOS) Beginning the interview: Explain that you already know something about how this illness started, and that you now want to get some more details to ensure that you have things in the correct sequence or order. e.g. "I am interested in finding out more about how you felt and what happened to you at each stage of your illness. I'm particularly interested in getting a clear idea of how you felt in the early stages, before it became quite obvious to you and your family that there was something definitely wrong with you."

14. DUP Interview (Nottingham Onset schedule : NOS) Identify a few anchor dates and related key events that stand out as remembered clearly, and that have some relationship to any part of the onset. Start with either the clearest or the first anchor date or event and ask, e.g. "At that time.. [quote it] ..how did you feel? "Did you feel that anything was wrong with you?" "What sort of experiences were you having?" "In what ways were you different from your normal self at that time?" "What happened next?" etc

15. DUP Interview (Nottingham Onset schedule : NOS) Initial, open-ended questioning: If you already have completed a psychiatric history use an introductory statement like; “ You’ve told me that you knew that the Mafia were following you and were going to harm you. That started about 2 weeks before Christmas. Now what I want us to think about is what was going on and how you were feeling leading up to this “. If not, spend the first part of the interview finding out about the subject's positive psychotic symptoms and dating their origin.

16. DUP Interview (Nottingham Onset schedule : NOS) Use open-ended questions: “Take me back to when you were feeling well and things were going OK for you, what happened first ….what was the first thing that you noticed had changed” Once the presence of a symptom has been confirmed, dates can be clarified with direct questioning if necessary. It is useful to repeat back to the client the information elicited, to ensure accuracy: “ You remember enjoying your holiday in Cyprus in August, but about two weeks after starting back at sixth form in September you describe feeling very worried and down in the dumps about your work load. This preoccupied you so much that it stopped you getting to sleep until 3am. Is that correct?”.

17. DUP Interview (Nottingham Onset schedule : NOS) Using common symptom checklists (list or early signs card sort): Explore all relevant non-psychotic symptoms with direct questions if necessary: “ We’ve been through things in detail but I’d just like to make sure we haven’t missed anything so I’m going to ask you a few specific things. Have you had the feeling of being restless, not being able to settle?”

18. Prodrome checklist(this list is for illustrative purposes and is not exhaustive )

19. Practical Points • Be flexible in your interview technique depending on the client: sometimes it may be easier working gradually backwards from when the first positive symptom was apparent to the beginning of the prodrome. • Dates will very often be vague despite trying to pin people down to birthdays, Xmas, summer holidays or important events in their lives. • Around the beginning, middle or end of a month will very often be the closest estimate and often subjects will not be able to be this specific. • ‘Summer’is taken as June, July and August, ‘Autumn’as September, October, November, ‘Winter’ as December January and February and ‘Spring’as March, April or May. ‘Mid summer’would therefore be July, ‘mid winter’January etc. • Symptoms may be fluctuating and intermittent. Prodromal symptoms may start and then remit for a time. The start of the episode will be from where symptoms begin and original baseline functioning is never resumed despite symptoms waxing and waning.

20. Calculating MHMDS DUP dates Information from the interview can now be used to date onset of: • Prodrome : date of onset of non-psychotic symptoms prior to emergence of definite first psychotic symptom (rated as 4 ‘moderate’ or above on PANSS) • Emergent psychosis : date when an unequivocal first positive symptom has been present, regardless of duration of the symptom • Manifest psychosis: date at which there is clear evidence of a positive psychotic symptom that has lasted for at least one week • Start of Psychosis Treatment: date the patient commenced prescribed anti psychotic medication and was compliant for at least 75% of time during subsequent month These dates can then be used to calculate both DUP and DUI

21. Guidance in relation to estimating dates When estimating dates: • Use 1st July if only have the year • 15th of the month if only know the month • 1st January for beginning of the year • 31st December for end of the year • 25th December for Christmas etc.

22. Timeline example 5th Feb 2000: Mum’s birthday Things OK March 2000 Not sleeping/poor concentration May 2000: left army June 2000 Smoking cannabis 3rd August: my birthday Things not too bad September 2000: working as a joiner Mid September 2000 Poor motivation/missing work October 2000: fell out with friends Anxious/arguments with friends November 2000: Arguing at work/paranoid 19th December 2000: sacked from job Fight with boss/lost job Christmas 2000 New Years Day 2001 Hearing voices 5th February 2001: mum’s birthday Thought food poisoned/ paranoid/ got into fight Late March 2001: Mum took me to GP Prescribed antidepressants Mid April 2001: saw GP Referred to Consultant Psychiatrist 16th April: outpatient appointment Prescribed Olanzepine 20mg nocte

23. Small group exercise On basis of the timeline example: • What is the ‘psychosis prodrome date’? • What is the ‘emergent psychosis’ date? • What is the ‘manifest psychosis’ date? • What is the ‘psychosis prescription’ date? • What is the ‘psychosis treatment’ start date? • What is the DUP? • What is the DUI?

24. Timeline: DUP and DUI calculation 5th Feb 2000: Mum’s birthday Things OK March 2000 Not sleeping/poor concentration May 2000: left army June 2000 Smoking cannabis 3rd August: my birthday Things not too bad September 2000: working as a joiner Mid September 2000 Poor motivation/missing work October 2000: fell out with friends Anxious/arguments with friends November 2000: Arguing at work/paranoid 19th December 2000: sacked from job Fight with boss/lost job Christmas 2000 New Years Day 2001 Hearing voices 5th February 2001: mum’s birthday Thought food poisoned/ paranoid/ got into fight Late March 2001: Mum took me to GP Prescribed antidepressants Mid April 2001: saw GP Referred to Consultant Psychiatrist 16th April: outpatient appointment Prescribed Olanzepine 20mg nocte DUP=16/4/2001- 8/1/2001= 88 days (3 months 8 days) DUI = 16/4/2001- 15/9/2000= 223 days (7 months)