Partner Notification in UK

1. Provider and contract referral for bacterial STIs: two sides of the same coin?Exploring the clinical practice and attitudes of sexual health advisersMerle Symondson behalf of Spread the Word team

2. Partner Notification in UK • Partner notification a core element in STI control • Shift in STI testing and management from GUM to primary care settings • Emphasis on ensuring that all services offering STI screening are competent in all aspects of patient/partner management • Growing body of research exploring efficacy and cost effectiveness of partner management strategies

3. Why commission research on PN? • The National Chlamydia Screening Programme (NCSP) was identifying a new population requiring PN • Recent NICE guidelines on one-to-one interventions for sexual health identified need to enable PN in community settings • Evidence review for NICE on partner notification • Emergence of new technologies may reduce efficacy of existing PN practices or offer scope for improvement • HTA call (07/43) with outline submission in summer 2007, for a randomised controlled trial of partner notification (contact tracing) in primary care

4. The brief from HTA

5. Spread The Word • Three arm, randomised controlled trial(RCT) of PN among patients diagnosed with Chlamydia in general practice. • Routine (patient), • Provider • Contract referral • Webtool linking participating GP study sites with a central research health adviser (RHA) office • RHA conducts standardised PN activity relating to patients and partners according to trial arms. • Outcomes measured include total partners notified, diagnosed, treated, reinfection rates, economic evaluation

6. Spread The Word

7. Partner notification (PN) is accepted as an essential element of STI control. Index patient benefits Public health benefits Reduction of onward transmission Targeted testing has high yield 50% chlamydia contacts, 65% gonorrhoea contacts will test positive By contrast, 3% of a population sample will test positive • Reduces index case risk of complications due to reinfection (chlamydia)

8. Partner Notification • Patient, partner, passive or self-referral • Provider or active referral • Conditional, contract or negotiated referral Faldon.C et al. The Manual For Sexual Health Advisers (SSHA 2004)

9. Patient, partner, passive or self-referral • Denotes when the index patient with the infection informs sexual partners. They are encouraged to notify partner(s) of their possible infection without the direct involvement of a health adviser. The patient may: • Provide the partner with information • Accompany the partner to the clinic • Hand over a contact slip • The health adviser may help a patient to establish the information to be passed on to a partner and the methods of providing it.

10. Provider or active referral • A health care worker notifies a patient’s partner(s). In the UK health advisers in GUM clinics almost exclusively perform this. • The index patient provides information on partner(s) to a health adviser, who then confidentially traces and notifies the partner(s) directly.

11. Conditional, contract or negotiated referral • A hybrid approach may be employed where an initial patient referral is followed up by a provider referral after an agreed period of time, if the contact has not attended.

12. What the SSHA Manual doesn’t tell us…. • How are these partner notification models operationalised in clinical services in the UK? • What is the role of contract referral in current practice? • Need for greater clarity in order to develop distinct, operational trial arms

13. Developing Spread the Word trial interventions • Pragmatic PN study • Trial interventions should be representative of current PN practice • Reproducible in clinical practice • Individuals experienced in conducting PN should be able to distinguish clearly between the three trial arms

14. Questions to be answered • Are the three PN methods clear to HAs from a variety of service types? • Are the three PN methods feasible and operational? • What are the patterns of use for each arm? • Are there conflict between theory and practice, and if so, how can they be resolved in a standardised intervention?

15. Engaging the experts • Capture the experience and attitudes of health care workers conducting PN in a range of service settings • Ascertain a clearer picture of how partner notification models are operationalised in clinical practice • Seek health adviser views on the proposed trial arm PN models

16. Methods • Email invitations to 12 sexual health advisers/health practitioners to participate in a one day focus group • Participants sought on basis on diversity of role/service setting • Metropolitan GUM clinic • Rural GUM clinic, • Integrated CASH/GUM/CSO, • Community health adviser • Acute teaching trust, Acute trust, PCT

17. Methods • Participants completed an online questionnaire prior to the focus group to establish baseline information on: • Experience • Service setting • Establishment • Responsibility for PN • Local PN policy/standard operating procedures • Use of patient/provider/contract PN • Training/education/competency measurement

18. Methods • Focus-groups: • participatory approach, utilising role play of commonly occurring clinical scenarios with actors playing the role of patients diagnosed with infections, observed by participants and facilitated by study team • Facilitated discussion of experience of partner notification in clinical practice • Trialling of trial interventions/proposed models • Data collection: 7 hours of audiotaped material transcribed and thematically analysed

19. Participants • Ten sexual health advisers/practitioners from nine services from across England (5 metropolitan, 5 non-metropolitan) • Six female participants, four male • Participant experience of delivering PN ranged from two years to in excess of twenty • Five participants had current/previous experience in senior/management roles, including training/supervising PN practice

20. General approaches to PN • Highly individualised • Negotiated process • Variable parameters include: infection type, relationship nature and duration, sexual orientation of patients, contact detail type and motivation to contact partner/s • Some patterns identifiable re: practitioner’s offer of PN choices

21. Patient referral • Most of participants agree common first approach for majority of patients. • May include preparatory discussions to help with managing difficult issues around disclosure and implications especially around issues such as infidelity • Individual views on what is ‘best’ for the patient may also influence PN negotiation

22. “I suppose on the first offering [it’s about] reading how they feel about letting someone know, really, and getting a feel. But I would like to give people the opportunity to refer themselves [patient referral]. I think the outcome is better for them”

23. Provider referral • All participants use provider referral, but how and when offered is variable • Many participants reported making calls to partners as soon as information is received from patients, sometimes within the team, sometimes with negotiation with external clinics • Some participants choose to offer provider referral on basis of perceived improved outcomes

24. “The PN we offer is very much dependant upon the condition [diagnosis] of the patient. Mostly we favour a provider referral just to take on ourselves and hopefully its going to get a better outcome as a result…Index patient referral, we generally try not to…and that generally seems to be the better one that the staff and patients prefer”

25. Provider referral • Participants highlighted that infection and patient types are significant in whether provider referral is offered or not.

26. “The provider referrals, I think are by far…this is also an urban [metropolitan] clinic, so by far the preferred…I actually tend to do those more for the blood borne infections, particularly with MSM. HIV is one that I’m much more likely to engage that.”

27. Provider referral • Some participants articulated the conducting provider referral resulted in an improved sense of satisfaction with one’s work/role

28. “I wouldn’t say that the culture of my clinic was necessarily provider referral. That’s for me….because I know that I can get everything done. Having done the gay men’s clinic for quite some time in various long spells, and that’s where the vast majority of provider referrals come from. You’re talking 20 or 30 people per patient. And it’s me. Yeah, it becomes a mission, actually. I start making charts of them all. So yeah, there’s some personal difference and I think that’s experience."

29. Contract referral • Participant’s accounts of contract referral use in clinical settings, and their own experience was variable

30. “The only time I know that’s been used in my clinic has been around HIV patients and usually that process has begun as generated by the HIV team staff, so everyone has got a hand in it”

31. “We do when there's a fragility, a psychological vulnerability around the impact of that diagnosis. But I can sense that actually it's important that they do tell their partner, they want to tell their partner but... just can't quite work it out at this point and they need more time to absorb it and think about it.... you can see that they're processing something and it's not the same as they're being resistant but actually just trying to work out how they're going to navigate it and negotiate it. So often I will say to them, 'Well, why don't we set a timeframe here and maybe buy like two or three weeks. If I follow you up, maybe by that point you'll have got to this stage,' and then I follow them up”,

32. Ambiguity in PN • Participant interpretations of what constitutes contact referral varies • The notion of contract referral being an implicit part of the PN process rather than something formally agreed between clinician and patient was highlighted by a number of participants • For others participants this is not considered as Contract referral but part of routine follow up care

33. “I think if they rang back and they were...I know we talked about Provider referral, but I think I would prefer to do an Index patient one, then I would say, 'That's fine.' And I'd asked them what had made them change their mind... and then I would probably turn them over to maybe a Contract and say, 'I'll give you two weeks. See how you get on and then I'll give you a call,' and frame it that I was just checking to see how they were getting on. And then if they'd been able to do it, then good. If not, then I think I would say maybe, 'It's not too late to go back to a Provider.”

34. “...we tell all our patients that we will call them in a couple of weeks' time just to see how they are and we wrap it round saying, 'Did you have any problems after the tablets? Were you okay?' ...But we always tell them [in advance] and say, 'And then we can see how you're getting on with telling your partners.' So, in a way, the Contract referrals are implicit in the normal way that we work because of the checking we do at two weeks. If they haven't been able to do it then, then we'll [offer Provider referral]”.

35. “You usually know quite soon if they're happy to let an individual know. Or they might be happy to let one know and not quite sure about another one. So for me, it's one to one with that individual. And also you kind of know if they're telling the truth to me and so everyone would be followed up and it's on that follow-up call for, say, Chlamydia, two weeks down the line, to actually talk to them and...re-assess the situation. If then they've had problems you do Provider referral”

36. Negotiated referral • A number of participants took partner names as a basis to aid follow up, no participants routinely documented contact details for partners at initial consultation • A theme of negotiated referral emerged from participants, giving patients time to think or weigh up options re: patient referral. • Within this an offer of delayed provider referral as part of a follow up call within a negotiated timeframe, with partner contact details being taken at follow up, if the patient was unsuccessful in contacting partners

37. Implications for the Spread the Word trial • Outcomes from the focus group show only two distinct models of PN • Patient referral • Provider referral • Two arm RCT • Recalculated sites/index patients

38. Implications for PN practice • PN models are in practice fluid though the process of PN • High degree of variability in how PN is operationalised • Existing guidance though widely recognised, is ambiguous and confused in it’s interpretation and may well need to be amended to reflect difference in practice between bacterial and blood borne infections

39. Implications for PN practice • Absence of any qualitative operational research of PN practice • Data shows demonstrates a rich and dynamic process between professional and patient • However this needs to be more clearly articulated to enable reproducibility and measurement of competency