1. Annex 3: Patient Tracking (or Tracing) Procedures
Tracking Patients Lost to Follow-up: Step1 – Review of Paper Charts/Files

2. 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

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

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

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.

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

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

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

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

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

12. What is “Phone-only” tracking?
After 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

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

14. Contact patient on the phone?
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

15. Contact any informant on the phone?
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

16. Is patient reported dead by an informant?
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

17. If patient is not known to have died, is all contact potential exhausted>
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 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

18. If tracing is ongoing, is the period over?
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.

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

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

21. Field Tracking Flow Chart

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

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

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

25. In person contact objectives
Patient or 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

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

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

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

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

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

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

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

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?