Paper Tracking Procedures for Lost to Follow-up Patients

1. Annex 7: Patient Tracking Procedures Tracking Patients Lost to Follow-up: Step1 – Review of Paper Charts/Files

2. Centre for Infectious Disease Research in Zambia - BetterInfo Study Three Objectives of Evaluating Paper Charts • Confirm patient should be tracked • Find patient information with which to identify and contact patient • Document process as well as information needed for tracking

3. No tracking: Patient has died (not LTFU) • If there is documentation that the patient has died? • Sometimes deaths are “informally” recorded on the charts • If the patient has died, then we no longer consider the patient lost to follow-up • If the patient has died, try and find information about the date of death • Document death and date of death Centre for Infectious Disease Research in Zambia - BetterInfo Study

4. No Tracing: Patient has transferred • If there is a documented transfer that falls on or after the date of the last visit, the patient is considered transferred out. • Of note, patients may transfer out and then come back, at which point they might be lost again. • So the presence of a transfer out, if followed by a routine clinical encounter, does not really indicate a transfer out. • Please record the date of transfer Centre for Infectious Disease Research in Zambia - BetterInfo Study

5. No tracing: Patient is still in care • Patient is in care: patient returned between sampling and • In some cases missing visit information leads to a patient appearing “lost” when the patient was not lost. • In these cases, document last recorded visit date Centre for Infectious Disease Research in Zambia - BetterInfo Study

6. No Tracing: Patient in not in CCP • On occasion you may be given a patient who is not in the CCP • Last visit date preceded CCP start date • Not an adult • In these instances, patient is also considered not lost to follow up and should no longer be traced • Documentation of not member of the CCP in the study forms. Centre for Infectious Disease Research in Zambia - BetterInfo Study

7. Tracing needed but not possible • No contact information • No phone numbers • No geographical locating information • No social contacts • No way to look for the patient Centre for Infectious Disease Research in Zambia - BetterInfo Study

8. Tracing needed: record information • Patient characteristics • Sex, age, occupation, height, treatment supporter identity, education level, marital status • Care characteristics • Date of enrollment, length of time in care, ART status • These are recorded as notes and not study “data” per se Centre for Infectious Disease Research in Zambia - BetterInfo Study

9. Abstraction of locator information • Information needed to locate patient • Phone • Contact number, treatment supporters numbers • Geographic information • Location of residence, location of work, other information Centre for Infectious Disease Research in Zambia - BetterInfo Study

10. Paper Tracing: Wrap up • Frequently information in the chart which is not in the electronic records • Tracing starts with records review • Iterative process sometimes Centre for Infectious Disease Research in Zambia - BetterInfo Study

11. Tracking Patients Lost to Follow-up:Step 2 – Phone Only Tracking

12. What is “Phone-only” tracking? • After files/charts are reviewed, tracking begins with phone-only tracking • In most cases this will be followed up in-person tracking • In person tracing may involve phone calls • We define phone-only tracking to end when any attempt to contact the patient in person in the field begins • When the tracker leaves the facility Centre for Infectious Disease Research in Zambia - BetterInfo Study

13. Phone Only Tracking - Workflow Process Map • Five decision points • Will review each in detail • Field tracking always occurs unless the patient is found to be dead • Exit from this workflow must go through LTFU-Q Centre for Infectious Disease Research in Zambia - BetterInfo Study

14. Attempt to contact patient on the phone If patient is contacted, administer LTFU-Q Current care status (if possible) reasons for switch or stop of care is possible (if possible) Patient is still tracked in the field, however, as some questions cannot be administered without consent Current care and reasons are repeated in a field conversation, even if already solicited on the phone Quality of person-to-person communication is higher Contact patient on the phone? Centre for Infectious Disease Research in Zambia - BetterInfo Study

15. If no contact with patient, the question at the end of a working day is whether any person (s) were contacted with new information about the patient outcome. If yes, then proceed to next question… If no (cannot find anyone with updated information about patient), document unsuccessful phone tracing and start field tracing Contact any informant on the phone? Centre for Infectious Disease Research in Zambia - BetterInfo Study

16. If someone is contacted with knowledge of the patient outcome, does this informant report the patient to have died? If yes, then document outcome and tracing for this patient is over. If no, then proceed to next question Is patient reported dead by an informant? Centre for Infectious Disease Research in Zambia - BetterInfo Study

17. If patient is not reported to be dead, the question becomes whether all information about the patient’s potential contact exhausted? Exhausted is after repeated searching of files/charts and other sources as well as information found in the field If the answer is yes, then document and commence field tracing If no, then proceed to next question If patient is not known to have died, is all contact potential exhausted> Centre for Infectious Disease Research in Zambia - BetterInfo Study

18. If the tracing period if over, even if the patient is not known to be dead and there is still contact information available, then tracing will end. The LTFU questionnaire should be filled. If tracing is ongoing, is the period over? Centre for Infectious Disease Research in Zambia - BetterInfo Study

19. Phone Tracing Objectives • Obtain as much information as we can through the phone • Patient outcomes • Vital status • In care status • Reasons for out of care or transfer • Patient contact information • New phone numbers • New geographic information • Document what we have learned through tracing • Align forms with process Centre for Infectious Disease Research in Zambia - BetterInfo Study

20. Tracking Lost Patient using Phone and In-person/Field Contact

21. Field Tracking Flow Chart Centre for Infectious Disease Research in Zambia - BetterInfo Study

22. Tracing Basics • Spare no efforts in tracing the patients • Important to ascertain outcomes in a high fraction of patients traced • When is a case closed? • When patient’s vital status has been proved to be dead • When patient has been found and refuses to give audience/ consent to study staff • When study closes • Outcome ascertainment • Vital status • For patients who are alive, we want to know if they are in care elsewhere or not • For patients who are in care elsewhere • We want to know why • For patients who are not in care • We want to know why Centre for Infectious Disease Research in Zambia - BetterInfo Study

23. Tracking for Sampling vs. Tracking for routine clinical purposes Sampling Study Routine • Small numbers • Long after last visit • More intensive efforts among the few sampled • Large numbers • Optimal intensity per patient • Shortly after last scheduled visit • Effort distributed over all lost Centre for Infectious Disease Research in Zambia - BetterInfo Study

24. Docket for a Tracker • A list of open cases • No hard rules but should be modest • 3 to 10 people you are actively looking for • Team should follow the order on the list Centre for Infectious Disease Research in Zambia - BetterInfo Study

25. In person contact objectives • Patient or treatment supporters’ phone numbers • Determine vital status • Determine updated care status if possible • Opportunity to meet in person to discuss reasons, administer surveys, and in some cases obtain biological specimens Centre for Infectious Disease Research in Zambia - BetterInfo Study

26. In-Person Tracking: Transportation • Cheapest and most practical mode of transport for ease of replication in future: • On foot • Bicycle/motor bike • Public transport (Bus or Taxi) or, • In special cases, project vehicle Centre for Infectious Disease Research in Zambia - BetterInfo Study

27. Initial Contact • Verify it’s the actual client & then introduce yourself • Explain purpose of your visit • Offer brief counseling to offer adherence support • Get consent • Discuss about missed appointment (ascertain reasons for missing appointment / current care status) • Administer survey • Thank the client before leaving Centre for Infectious Disease Research in Zambia - BetterInfo Study

28. Multiple Tracking Targets • Each tracker will be actively tracking at least 3 to 10 clients • Individual open cases must be properly documented for ease of tracking progress • Trackers must plan their tracking strategically to promote cost effectiveness. Centre for Infectious Disease Research in Zambia - BetterInfo Study

29. Ascertaining updated care status if found in person • We want to know if they are still in care • If they are in care • Reasons for switch • If the patient is not in care • Reasons for stopping care Centre for Infectious Disease Research in Zambia - BetterInfo Study

30. Find that patient has died • Death date • Approximate is better than missing • Try to ascertain date of death – you have more information at your disposal at that point than at any point down the line • Care at the time of death • Had the patient seen a doctor or nurse before death? • Reasons for death • Mutually exclusive and exhaustive classification: • If seen by a health care provider, reported cause of death from professional Centre for Infectious Disease Research in Zambia - BetterInfo Study

31. Find the patient alive – in person – not in care • Patient found through the tracking process but answers no to the question: • “Have you seen any doctor, nurse or other professional health worker (e.g., pharmacist) for the monitoring or treatment of HIV since your last visit we have on file which was [X date] at the [original clinic]?” • Move away • Date of moving somewhere else • Reasons for stopping care • Long list of reasons, mark all that apply • We do not read each reason • The approach to obtaining this information is conversational • Can probe on dimensions • Structural; psychosocial; clinic-based Centre for Infectious Disease Research in Zambia - BetterInfo Study

32. Find patient in person, in care elsewhere • Patient in care • Answers yes to the question • “Have you seen any doctor, nurse or other professional health worker (e.g., pharmacist) for the monitoring or treatment of HIV since your last visit we have on file which was [X date] at the [original clinic]?” • Where? • Location or program receiving care • When? • Date of moving somewhere else • Why? Reasons for switching sites • Long list of reasons, mark all that apply • Medication gap • Other surveys Centre for Infectious Disease Research in Zambia - BetterInfo Study

33. Find informant – reports patient is alive • Patient alive but the only information we seek to record about patients is whether they have moved. • You may record additional process information such as new phone numbers etc. Moved? Centre for Infectious Disease Research in Zambia - BetterInfo Study