[HN Gopher] What it was like to be the subject of a longitudinal...
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What it was like to be the subject of a longitudinal study (2023)
Author : Tomte
Score : 47 points
Date : 2024-01-31 07:59 UTC (15 hours ago)
(HTM) web link (slate.com)
(TXT) w3m dump (slate.com)
| gumby wrote:
| I've been in a NORC longitudinal study since ~1980. It's pretty
| low maintenance, and they lost track of me for a decade or so
| (part of 20s and 30s) due to how life goes. First it was just
| surveys (actually interviews) but just before covid they sent a
| nurse to draw some blood (they ask for permission before every
| query, so I was OK with that).
|
| Earlier on they would tell me a little of some learnings from the
| data, but now it simply goes into some database in Chicago and I
| guess various people who could use it for some study query it.
|
| Not enough for a book in my case; barely enough for an HN
| comment!
| Mistletoe wrote:
| What are they studying?
| _a_a_a_ wrote:
| Young HN posters by the sound of it.
| gumby wrote:
| any longitudinal study by definition has to start
| relatively early.
| gumby wrote:
| The first questionnaire was given to us in school and they
| asked about our classes, whether we planned to go to
| university, things like that. It was _long_ but the school
| just gave it to us like it was a test (except you had to fill
| in little bubbles on a form which none of us had ever done
| before).
|
| There were a couple after HS graduation asking about if I was
| in university or working, married, income, job, stuff like
| that. Then I had a gap (was out of the country) and after
| they asked things like marital status, kids, work, health
| life satisfaction, etc. Mostly pretty much the same, of
| course, because how else do you track changes over time. But
| it's not worth asking 16 yo about marital status -- 99.99% of
| the answers will be the same. And in the 80s you didn't ask
| about sexual orientation.
|
| The somewhat recent blood test was the first time I'd been
| asked that. I presume that will continue through end of life.
| (Coincidentally an old classmate died last week...basically
| so far I've only known about a half dozen, definitely less
| than 10, people my age who have died. But I expect that curve
| to start bending upwards).
| bashd4 wrote:
| I was fairly interested until the last few paragraphs where it
| rapidly transformed into a warning about evil tech multi
| billionaires, their companies and parents exploitation of
| children online. Not that that isn't worth discussing, but I was
| interested in hearing more about her experience in the study as
| per the article title.
| VikingCoder wrote:
| Why are we not asked to donate our medical records to science
| when we pass?
|
| Why are we not asked to open up our medical records to our
| offspring when we pass?
| markus92 wrote:
| Good chance (part of) your medical records are already being
| used in some retrospective study, even while you're still
| alive.
| gumby wrote:
| The whole bodies should be donated (for re use as much as
| possible, and then research) by default, or even mandatorily,
| since you don't need it any more after you're dead.
|
| Sadly some people have weird fetishes over corpses and want
| them handled in various ritualistic ways, which I think holds
| back progress and quality of human life (through tissue
| donations). We used some cadaver tissue in a study and had to
| return it (what was left of it) afterwards!
|
| Later we realized the same doesn't apply to tissue removed from
| _living_ people for medical reasons, which to a startup made
| some things easier (and in other ways harder -- typically,
| healthy tissue isn 't removed from living people, thank
| goodness!)
| burnished wrote:
| Just by default should be sufficient. Any further than that
| puts you at odds with property laws for very little gain.
| gumby wrote:
| How can someone "own" their corpse?
|
| But I suppose the Henrietta Lacks case is a precedent. A
| terrible decision IMHO
| michaelbuckbee wrote:
| My father has been part of the Diabetes Control and Complications
| Trial (DCCT) [1] and its follow-up study Epidemiology of Diabetes
| Interventions and Complications (EDIC)
|
| My understanding is that the study has been fairly conclusive in
| proving that maintaining blood sugar levels as close to the
| normal range as possible has a positive impact on many of the
| previously thought "inevitable" side effects of diabetes (like
| losing your vision, losing feeling in your extremities, kidney
| failure, etc.).
|
| He's justifiably proud of having helped in some small way improve
| the outcomes for lots of other folks.
|
| 1 - https://pubmed.ncbi.nlm.nih.gov/2882967/
|
| 2 - https://repository.niddk.nih.gov/studies/edic/
| annapowellsmith wrote:
| My father is in the National Survey of Health & Development study
| of people born in Britain in March 1946, "the longest continually
| running major birth cohort study in the world":
| https://en.wikipedia.org/wiki/National_Survey_of_Health_%26_...
|
| He seems to enjoy it, especially as a retired research
| psychologist. Every few years he goes to London and they run
| tests, see how long he can stand on one leg, do various scans
| etc. They are currently running a sleep study using wearables.
|
| The study also had a 70th birthday party in 2016 for the cohort,
| which I got to go to as a guest. Apparently very few people have
| dropped out, so hopefully it's a positive experience for most
| people.
|
| There's also a book about the study:
| https://www.amazon.co.uk/Life-Project-Extraordinary-Story-Or...
| FrustratedMonky wrote:
| Has anybody read the book? Is it worth it? Does she find her
| predictions and were they close, or far off?
| aristus wrote:
| I was part of a study of bone marrow donors. Basically a short
| phone call every year. The questions were solely about physical
| effects, but each time I tried to explain psychological effects
| similar to PTSD. I have heard similar stories from other donors.
| The grad students on the phone were sympathetic but as far as I
| can tell there was no way to push that information up the chain.
| They had a checklist and that was it.
| chankstein38 wrote:
| Sorry if this is insensitive but I'm curious. Feel free not to
| answer, what is the PTSD from? I have never had any exposure to
| bone marrow donation. Is it that you donated and it was painful
| and/or the whole experience was frightening?
| aristus wrote:
| Note: This applies only to traditional "harvest" surgery and
| not the new aphereisis method used today.
|
| The surgery itself wasn't great but I was at 80% after a
| month and 100% after three. No long term effects.
|
| Here's the thing: at every point in the process, interviews,
| blood tests, health checks, etc, at every point the entire
| process is explained very carefully and you are told at every
| point that it is voluntary and you can back out right up the
| the minute of surgery.
|
| Except. The recipient has their marrow irradiated and killed
| a week before you show up to donate. So you better make that
| appointment. Of course all voluntary. It was a real mindfuck
| of a whipsaw of emotions going in, and then months of zero
| information after.
|
| It's hard to explain the feeling of holding another anonymous
| kid's life in your hands. I'd cry for a week every year
| around that time, and then the survey phone call.
|
| The story worked out for us. I got to meet him a couple years
| later and was just invited to his wedding.
| giraffe_lady wrote:
| It sounds like they have a donation-specific experience
| around it.
|
| But in general, non-emergency surgery is a very common cause
| of ptsd. It has a lot of the "checkboxes" of pain plus
| knowledge of powerlessness and lack of agency in the face of
| impending suffering. The psychoactive effects anaesthesia may
| play a part too; I've never read anything too concrete about
| it but some of the sufferers I've known believe that
| strongly.
|
| In my years in and out of ptsd support groups I have almost
| always known someone who ended up there from a scheduled,
| "routine" surgery. A lot of fairly common scenarios can cause
| it. About half the people I see in there are from car
| accidents, the rest a pretty even split between sexual
| assault and childhood abuse. Only ever come across a handful
| of the "typical" combat veteran type folks, though I
| understand they mostly have their own networks.
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