Recently, I was in Toronto for my annual “checkup” with Paul, my friendly research coordinator with the Ontario Cohort Study (OCS). I’ve previously talked about my involvement in this Ontario HIV Treatment Network (OHTN)'s research cohort here. Today I wanted to provide a photo-post with more detail on what the testing process looks like from the ground.
But first some background on OCS for those who are unfamiliar with it. Almost 6,000 Ontario people living with HIV have been voluntarily recruited since the program began in 1996 when it was called HOOD, then HIIP before settling on the name OCS. I’ve been in it since the beginning, participant number seven I believe, so there may be almost seventeen years of history in their about me and my clinical progress.
Why the need for a longitudinal data base like OCS? Well here’s what their website says
“The purpose of the OCS is to collect information on the clinical and health profiles of people living with HIV in care in Ontario to provide a robust information resource for clinical, socio-behavioural, population health, and health services research. Our aims are:
- To understand the pychosocial and health context of people living with HIV
- To understand patterns of health services use
- To understand issues related to mental health and addictions
- To examine HIV infection and its complications
- To examine HIV treatment and its complications, including adverse events and HIV drug resistance
- To examine co-morbid diseases and conditions among people living with HIV
- To examine social, psychological, and other factors related to behaviour that poses risk for secondary HIV transmission.”
The information to accomplish all this is largely drawn from patient records and charts – particpants' CD4, viral load results and treatment information all go in to here, for instance via various automated or manually driven processes, with your informed consent at the outset, of course. All information collected is both anonymous - there are complex controls for this – and confidential.
Back to my visit to St Mike’s. Besides being the location of the HIV Positive Care Clinic I’ve attended, mostly quarterly, since day one, it is also a collection point for OCS data. And it is one of the two sites – the other is Sunnybrook Hospital – that engages a subset of OCS participants, a few hundred strong, in tests which additionally measure cognitive ability (often called “neuro-AIDS” work now) and also track a bundle of issues like housing, income, depression, mastery, substance use, impact of stigma and, on occasion, one–off suites of questions soliciting participants’ views on things like the criminalization of people living with HIV. The entire process takes about ninety minutes each year. Participants are compensated $50 for their trouble at each visit.
So today, I’m going to walk you through that process, starting at the back doors of St Michael’s Hospital in downtown Toronto, a building that has clearly seen better days, and where the elevators don’t always work, including the day of this particular visit. Now I’m a big fan of St Mikes, don’t get me wrong – they’ve kept me alive for almost twenty years, and I have a profound affection for those who work there - but it’s a classic inner city hospital that is an obvious candidate for a refit. Anyway, to the glamourless second floor I go to see Paul, the Research Coordinator who administers the tests that I’m to take.
Paul always begins with explaining the parameters for the tests, what they are used for, how I am free not to participate in any of them, how some might be difficult or stressful, how Kleenex is available if there are tears. So far I’ve yet to need that, thankfully, although he’s right about the stressfulness, at least for those of us who dislike our weaknesses being exposed. Which is where the memory tests come in which he launches right in to as the first in the series he will be giving me today.
Paul recites a series of 15 nouns, so slowly that it seems relatively easy for me to repeat them for him. But I cant, I seldom score more than seven, and last week was no better. I’ve tried various techniques and this time I thought I’d concentrate on just the first five and (literally) forget the rest. Which I did although I managed to tack on two from the end I somehow remembered also. In any event, Paul then repeats the list, presumably to see if your short-term memory improves through repetition. Mine does, but only marginally; I think I scored eight the second time around – but not surprisingly, I can’t remember now.
Given that this is a longitudinal study, i.e. one that tracks people over time, I’m thinking tests like this must provide valuable information about how our memory works, or not, as we get older. With HIV and aging in the spotlight nowadays, this data has the potential, I suspect, to add considerably to our knowledge of what aging, or HIV treatment, or HIV infection generally – does to our brain power.
So having failed semi-miserably (I think) on the memory test, but knowing that I’ll likely do better from here on in, Paul moves on to a couple of tests which seem to measure my brain/hand coordination. I'll be needing to put a series of shaped pegs in to shaped holes with the stopwatch running. Here is the board, with the pegs you need to fit into the holes using just one hand. You’ll note that the pegs have ridges on them which means they fit in to the similarly shaped holes only in one direction.
Over time I've learned how to perform this test with some semblance of dexterity. I am less nimble-fingered when the requirement is next to repeat the task using only my left hand but again experience has somehow increased my dexterity in this, advancing years or not.
Next to a timed pencil on paper test – I was not allowed to photograph this – in which you are required to match a series of numbers with symbols, the code for which is provided at the top of the page. I always fly though this one with flying colours (I think).
Back to memory tests, this one revolving around a series of blue plastic blocks mounted on a small board. Paul touches/taps these blocks in seeming random order (I’m sure it’s not) first in a sequence of three, then four, then six taps. I'm asked to repeat his series of taps each time, in the right order. It’s easy-peasy at three, easy at four but by the time he has gone though a sequence of six taps it’s a challenge. It’s even more challenging when we do things backwards. I have to repeat the taps in the reverse order that he showed me. It’s tricky, to say the least, and I’m stumbling by the end.
More challenges to my memory come next in a reprise of the fifteen nouns ordeal. Sixty minutes (?) have elapsed since we last visited this list of nouns and now I have to repeat those that I remember. My strategy of concentrating on remembering the first five has collapsed by this time, although I manage to salvage about five nouns nevertheless. Then one final variation – Paul reads me a list of words and I am asked to say which of those words was included in the original list. I’m hit and miss here – after all I really only listened to the first five first time around.
Then on to a battery of questions - on my mental health and any feelings of anxiety or depression, my ability to perform tasks, my housing situation, my mastery of my circumstances, the supports I’m receiving, the kind of health services I’ve used, my alcohol and substance use, even my smoking history (which data collectively, I’m thinking, will be highly useful for The Smoking Project which I co-chair.)
Towards the end – it’s late afternoon by now - there is series of questions on my meds. Have I missed any doses in the last week, I’m asked? I’m pretty good at adherence but fess up to missing my mid-day dose just that day, having forgotten to pack it that morning before I left for Toronto. (There are those memory issues again.) Veteran of many regimes, I do poorly in remembering what meds I’m on now too. Paul reverts to charts that he shows me to help me remember the names.
A few questions about my recent sexual history - how many partners I’ve had, their status and what I’ve done with them - which is deemed personal enough for Paul to hand his laptop over for participants to input their responses privately. And then the process is done. I’ve always found it a surprisingly draining ninety minutes, a little bit invasive, a little bit tiresome, which is why I never have any trouble accepting the $50 that Paul proffers at the end. There is, in fact, a deep feeling that I’ve truly earned it.
But, as I step out into the cool night air, it’s already dark and I’m feeling content, if not smug. Glad that I have $50 in my pocket which I feel the need to turn into something fast, so I cross the street to Fran’s Restauarant and spend half of it on my dinner – but also content that I feel like I’ve truly contributed to something worthwhile. I’m tuned in enough to realize that the questions I’ve been asked and tests that have been administered will help in some small way to expand our collective knowledge of how HIV affects us in a myriad of ways. And that feels good.
So does having the meatloaf dinner and strawberry milkshake at Fran’s the test paid for. But that’s another story.
The report said it was important to “carefully decide who to disclose to” and to self-educate about HIV/AIDS by attending community workshops or training programs, such as those offered by CAAT.
