TB: non-adherence, why it s a problem, and what to do about it. Elizabeth Rea, MD, MSc, FRCPC AMOH, TB program Toronto Public Health

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2 TB: non-adherence, why it s a problem, and what to do about it Elizabeth Rea, MD, MSc, FRCPC AMOH, TB program Toronto Public Health

3 March 24 th World TB Day

4 Every TB patient counts

5 Slow-growing bacteria TB 101 Serious illness cough, fever, weight loss, hemoptysis But preventable, treatable, curable Treatment is 6+ months of specific antibiotics TB in the lungs is infectious Only 10% of people who get infected will get sick months or years later

6 Public Health Context TB known for millennia TB issues part of early public health movement TB control programs part of the core public health standards TB medication and care is free to patient Nurse case-management, respiratory isolation while infectious, DOT, contact investigation and referral Legislation to enforce treatment if necessary

7 Not this kind of non-adherence

8 TB Non-adherence To TB medication, appointments/testing To airborne isolation while infectious NOT Adherence to non-tb treatment (*unless material to TB adherence) Being nice

9 Why worry? 1/3 patients do not take meds as prescribed 1958 : 45% of new TB patients & 60% of retreatment cases do not take their ambulatory medication Wynn-Williams, Tubercle :138 Prolonged infectiousness Higher relapse / treatment failure rate Acquired drug resistance

10 We can t predict non-adherence Factors NOT associated with adherence: race occupation marital status sex education level of income age religion socio-economic status People who can t predict adherence: physicians, nurses, social workers, other health care providers

11 Impact of adherence (roughly) Weiss et al NEJM 4/94 Tarrant County, Texas Number of patients = Traditional Rx DOT 1/80 10/86 11/86 12/92 Relapse rate 20.9% 5.5% Failure during therapy 4.4% 1.2% Relapse with MDR-TB 6.1% 0.9% Primary resistance 13.0% 6.7% Acquired resistance 10.3% 1.4%

12 How much non-adherence to meds is a problem? 5 days a week meds is fine on DOT SA weekend meds are extra In continuation phase, 3 days a week on DOT is acceptable (higher doses for INH, PZA, EMB) Selective med non-adherence more risky than complete non-adherence (INH monotherapy x2 weeks 25% acquire resistance)

13 How much non-adherence to airborne isolation matters? Case infectiousness Environment, duration, vulnerability of contacts already exposed? TB is not exquisitely infectious On treatment?

14 Current burden of disease matters More extensive disease, earlier in treatment Drug resistant strain (second line meds less effective)

15 Tuberculosis is A social disease with a medical aspect. -Sir William Osler

16 Themes in non-adherence Access and characteristics of TB services Interpretation of illness Financial burden Knowledge, attitudes, beliefs about treatment Law, immigration Personal characteristics and behaviours Family and community support Munro et al systematic review PLoS Med (7):e238

17 Enablers: to overcome barriers Taking pills: take with food/treat, switch to liquid formulation, ramp doses, take at bedtime Making appointments: transportation to appointments Timing to accommodate school/work/kids/etc Accessible location cell phone Staying in isolation: food delivery while in resp isolation (friends, meals on wheels, etc) doctor s note etc for work/school/court/immigration Proctor exams, second-hand air conditioner

18 Competing priorities: holistic care Social work assistance: income support programs; housing; postponing immigration or court appointments; childcare Referral/support for other health issues

19 Barriers in acute care isolation TV, reading materials (in own language), friendly visits, accompanied outside/smoke breaks, long distance phone cards Facilitating visits from friends/relatives

20 Incentives: carrots tied to adherence TLC thereputic relationship Calendar gold stars, stickers Grocery coupons Phone cards Movie passes, child s toy, etc Socks, tokens, coffee cash Transition to less strict supervision? **only good for patients who can plan ahead!

21 TB has lots of baggage many people remember when TB was hard to cure many have relatives who were very ill or died TB can be frightening many cultures link TB and being dirty or poor TB can feel shameful, not a respectable illness TB is spread through the air it can feel like you don t have control

22 Country of Birth # cases, India 684 TB is a cultural issue Philippines 514 China 360 Vietnam 214 Pakistan 166 Sri Lanka 126 Somalia 120 Hong Kong 88 Ethopia 79 other 1052 total 3413

23 This isn t non-adherence 54 year old man from Somalia Just diagnosed today with pulmonary TB Angry, refusing to believe diagnosis Refusing TB medication, DOT, home visit also has (costly) ticket to fly to Somalia next week

24 Financial aspects Little SES data available 88% immigrant Median 7 years postarrival Loss of housing, job

25 Programmatic issues Many of these are not issues communicable control programs are used to dealing with training/familiarity, budget lines, non-episodic Assessment and referral especially social work Enablers and incentives often fall to public health Team approach ongoing communication

26 Alternate strategies Flexibility tackling the barrier to adherence good cop, bad cop Formal contracting Formal letter Other best-fit legislation: Mental Health Act, federal Quarantine Act, CAS

27 Section 22 of the Health Protection and Promotion Act Legal letter laying out actions patient is required to take to reduce risk to others No enforcement inherent to sec22 Only applied to non-adherence with medical assessment, treatment, infection control Counselling tool vs step to sec35

28 You re not the boss of me 20 year old man, sharing apartment with room-mates Not very ill Missing appointments and meds Resents DOT interference Other priorities: school/work, social No regular schedule

29 Assessing risk for possible sec 22 Likelihood of imminent infectiousness? Current smear, CXR, symptoms How long on treatment so far How consistently/extensively missing meds How consistently breaking resp isolation /urgent situation (adequate) supports in place? Less intrusive options? Other legislation better fit? Likely response?

30 Upon reasonable and probable grounds A communicable disease exists or may exist or there is an immediate risk of an outbreak of a communicable disease in the health unit The communicable disease presents a risk to the health of persons in the health unit The requirements specified in the order are necessary to decrease or eliminate the risk to health presented by the communicable disease

31 25 year old, MDR-TB Negotiation Smart, articulate, charming Negotiates meds, times, incentives DOT not necessary for me Now that IV meds over, I don t need DOT 1 year into tx - half-way through: so tired of taking meds, not getting anywhere, no point

32 Sec 22may included but not limited to: Submit to an examination be a physician as to whether or not the person has a communicable disease or is or is not infected with an agent of a communicable disease If a virulent disease: to place himself forthwith under the care and treatment of a physician To conduct himself in such a manner as not to expose another person to infection to isolate himself and remain in isolation from other persons

33 Willing but unable 32 year old Schizophrenia and extensive alcohol use Living in shelter supportive housing Unable to maintain isolation in hospital kept leaving, found at home drinking with friends

34 Who can you write a sec22 for? For whoever needs to take the action (usually the person with TB) Person does not need to have capacity to understand / follow direction Deemed served at personal delivery or 7days after mailed to last known address Effective immediately

35 Format for a section 22 What you are required to do The reasons for the order Legal surrounds ( upon reasonable and probably grounds, right to appeal, etc)

36 Tips from the school of hard knocks Your physician Dr X or delegate At hospital X or any other facility to which you may be transferred until public health staff tell you otherwise Include the 3 key elements for sec 35 (examination, treatment, not exposing others)

37 Section 35 orders Rare 10/5600 in 7 yrs in Ontario

38 Court ordered tx: Section 35 Only for virulent disease (eg TB) Only applies to sec22 breaches of infection control, examination, treatment requirements MOH application to provincial court Judge orders detention for treatment up to 6m, usually at West Park Healthcare Centre

39 Section 35 con t Person does not need to be present at hearing Valid in all Ontario jurisdictions Under sec35 order, Health Care Consent Act does not apply to examination and treatment TB Unable, not unwilling: severe addiction/psychiatric difficulties

40 Considerations What actual risk to the public is created by the breach? Is giving a second chance a reasonable option? Does the breach of the section 22 order warrant detention in a hospital? Are there reasonable less-restrictive/intrusive alternatives to detention? Is an appropriate hospital or other facility available to provide detention? Case conference, advice from colleagues

41 Holes (in Ontario) No ability to enforce immediate containment Sec35 hearings can take a week or more to book at provincial court Judges mainly deal with criminal issues not familiar with HPPA, or TB, or public health Court hearings confrontational

42 David: RIP 42 years old man, north west Ontario reserve Long-standing diabetes, severe alcoholism Diagnosed with fully sensitive TB On and off DOT, largely non-adherent In Manitoba, 3 different jurisdictions in ON 3 years into tx MDR Non-adherent to DOT, relapsed in community West Park, stabilized discharged to community tx XDR, drinking heavily 10 years on TB treatment, 5 years in hospital

43 Summary Good nursing skills theraputic relationship Be pragmatic, address systems issues Team effort, communication Legal action: thoughtful use Every patient counts!

44 Questions? Dr Elizabeth Rea Thanks to Jane Speakman, Ontario Lung Association TB Conference, many many TB nurses and patients