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Can an app help you live with neurodegenerative diseases? · Health Matters

• 0:00
  Speaker 1: If it's a matter of health, it matters. Health Matters
• 0:04
  Speaker 1: with Daniel Martin. Great to have you on the show, everybody.
• 0:07
  Speaker 1: Thank you for joining me for another edition of Health Matters.
• 0:11
  Speaker 1: Another opportunity to discuss the intersection of two of my
• 0:14
  Speaker 1: favorite things, and that's health and technology. We wonder whether
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  Speaker 1: an app could help you live better with your neurodegenerative diseases. Now,
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  Speaker 1: this is in light of the just announced rolling out
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  Speaker 1: of neuropal.
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  Speaker 1: It's not an app really lah. It's like a service.
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  Speaker 1: It's the idea is to try and improve your function
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  Speaker 1: and quality of life if you're living with one of
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  Speaker 1: these neurodegenerative issues.
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  Speaker 1: Wondering what this service will entail, wondering how technology plays
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  Speaker 1: a part in this, and what modern medicine is doing
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  Speaker 1: to help make sure that somebody who's living with neurodegenerative
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  Speaker 1: diseases can have as much an improved quality as possible.
• 0:57
  Speaker 1: Joining me on today's edition is uh my guest uh
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  Speaker 1: who's been on the show before, of course, Associate Professor
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  Speaker 1: Adly Ong, who's a senior consultant in neurology from NNI
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  Speaker 1: and co-lead on Neuropal, which has just been launched. Profong, hello,
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  Speaker 1: good to talk to you again.
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  Speaker 2: Hi Daniel, it's good to be back. So this
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  Speaker 1: is more of a,
• 1:15
  Speaker 2: yeah.
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  Speaker 2: Yeah, actually, it's a clinical service. Um, the overarching aim
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  Speaker 2: is to bring palliative care that has been classically thought
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  Speaker 2: to be provided only at the end of life, more upstream,
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  Speaker 2: and provided from the time of diagnosis. The reason why
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  Speaker 2: we do this is that patients with neurological disorders, they
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  Speaker 2: have very long.
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  Speaker 2: Disease trajectories, um, the needs and symptoms fluctuate over time
• 1:41
  Speaker 2: throughout the course of disease. So it's very important to
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  Speaker 2: try to find a way to systematically screen them for
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  Speaker 2: these symptoms and try to intervene as they go along.
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  Speaker 1: So is this about intervening before they show signs?
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  Speaker 2: It's not about intervening before they show signs, but rather
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  Speaker 2: trying to capture the symptoms and needs more holistically. For example,
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  Speaker 2: if a patient with multiple sclerosis, which is an inflammatory
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  Speaker 2: condition in younger people or someone with Parkinson's disease comes
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  Speaker 2: to clinic, they may not be able to sort of
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  Speaker 2: tell the doctor and nurse everything that that that they're
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  Speaker 2: suffering from in terms of symptoms.
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  Speaker 2: We're not just talking about physical symptoms, we're talking about
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  Speaker 2: psychosocial symptoms, meaning their mood changes, cognitive changes, sleep issues,
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  Speaker 2: just feeling tired, and even, even interpersonal relationships, you know,
• 2:33
  Speaker 2: issues with their family. So what we try to do
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  Speaker 2: is every time before each time they come to the clinic,
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  Speaker 2: we try to get them to do a quick survey
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  Speaker 2: to tell the healthcare professionals what the top three needs are.
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  Speaker 2: So how we do this is one week before the appointment,
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  Speaker 2: they get sent an SMS and through the SMS they
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  Speaker 2: click on the link and on that link, they will
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  Speaker 2: uh be sort of they, they will find a link
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  Speaker 2: to something called a distress thermometer, which is a tool
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  Speaker 2: that was classically used in oncology, which is cancer treatment,
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  Speaker 2: to sort of ascertain what patients' needs are.
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  Speaker 2: We have tweaked this tool towards more neurological conditions where
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  Speaker 2: they ask, you know, do you have tiredness, sleep issues,
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  Speaker 2: cognitive problems, mood issues, or even spiritual financial worries that
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  Speaker 2: bother you. So they will then sort of take the
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  Speaker 2: top three that they want to highlight to the team,
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  Speaker 2: and by the time they come to see the doctor
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  Speaker 2: or the nurse, these issues would then reflect.
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  Speaker 2: And this is very helpful because during a short clinic consultation,
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  Speaker 2: patients often decide, you know, let me curate what I'm
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  Speaker 2: going to tell the doctor. The doctor doesn't have time.
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  Speaker 2: I don't have time to tell them everything I'm going through,
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  Speaker 2: and I don't dare to tell them. I don't want
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  Speaker 2: to disturb the nurse or the doctor. So we don't
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  Speaker 2: want that to happen. We want to find a way
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  Speaker 2: for them to make, to make it easier for them
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  Speaker 2: to tell us what's going on.
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  Speaker 2: And when they fill up this what we call distress
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  Speaker 2: thermometer or DT for short, classically the arbitrary cutoff is
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  Speaker 2: about 6, so it's a scale of 1 to 1010
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  Speaker 2: being the most stressed. So about 6 and above, these
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  Speaker 2: cases will then be flagged up to the team. So
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  Speaker 2: we have a multidisciplinary team as well as part of
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  Speaker 2: this Neurope project.
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  Speaker 2: which is held by allied health professionals, so your therapists,
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  Speaker 2: your social workers, your psychologists and nurses, and they'll come
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  Speaker 2: together with the palliative care doctors and the neuropalliative care
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  Speaker 2: specialists to discuss your case and sort of determine what
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  Speaker 2: interventions that patient needs.
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  Speaker 2: So this is all very important because, you know, we
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  Speaker 2: don't want treatment, standard treatment for each patient tends to
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  Speaker 2: be quite piecemeal at times. When a patient caregiver comes
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  Speaker 2: to the clinic, you know, that, you know, they tell
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  Speaker 2: the doctor something or doctor asks them about about the issues,
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  Speaker 2: and the doctor tries to solve one problem at a time.
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  Speaker 2: Oftentimes we refer the patient to a therapist, to a
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  Speaker 2: social worker, but there's not much communication that goes on
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  Speaker 2: after that, right? We don't really know what happens to
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  Speaker 2: the patient after they get referred to someone else in
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  Speaker 2: the ecosystem. So through this, we try to improve the
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  Speaker 2: communication amongst all the healthcare professionals involved in the patient's care.
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  Speaker 1: I love the multidisciplinary approach. I love the discussing of
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  Speaker 1: the individuals, um, cases as well, and that SMS and that, that, that.
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  Speaker 1: Thermometer thing, what's it called? It's called the thermometer. That's
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  Speaker 1: what I was talking about when I mentioned at the
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  Speaker 1: beginning the integration of tech and health as well. So
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  Speaker 1: tech is really helping you all reach out and maybe
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  Speaker 1: keep in touch with the patient as opposed to only
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  Speaker 1: seeing them on their appointments and things like that. I
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  Speaker 1: love that. This, um, was already so Neuropa is actually
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  Speaker 1: kind of was, can I say soft launch back in
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  Speaker 1: April 2024 and it already reached 2000, right?
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  Speaker 2: Yeah, so we impacted nearly 2000 patients in the last
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  Speaker 2: one year. We focus primarily on the top five specialties
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  Speaker 2: that have patients with a lot of symptoms and and
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  Speaker 2: and needs.
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  Speaker 2: So they include patients with dementia, patients with Parkinson's disease,
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  Speaker 2: patients with neuromuscular disorders. So what this means are patients
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  Speaker 2: with nerve and muscle problems, classically someone with motor neuron disease,
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  Speaker 2: and then you also have patients with what I mentioned before,
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  Speaker 2: neuro immunological disorders such as multiple sclerosis. So these patients
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  Speaker 2: tend to be younger, in their 30s to 40s, they
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  Speaker 2: have disabilities and they are not able to work, so
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  Speaker 2: they also
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  Speaker 2: Have to deal with financial issues and mood issues. So, um,
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  Speaker 2: you know, I think we're trying to show that, you know,
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  Speaker 2: neurological disorders and palliative care is not just for those
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  Speaker 2: at the end of life with end-stage dementia, but it
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  Speaker 2: cuts across every single neurological condition because your, your neuro
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  Speaker 2: your condition affects different parts of your brain. It can
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  Speaker 2: cause different types of mood symptoms and cognitive symptoms and
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  Speaker 2: all that plays a big role in affecting.
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  Speaker 1: OK, so here's my question. If you are someone who
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  Speaker 1: is living with nerve or muscle conditions or fine motor
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  Speaker 1: skills issues, would you necessarily have a handphone that would
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  Speaker 1: allow you or be able to click on a link
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  Speaker 1: to do this? That's one part of the question. And
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  Speaker 1: the other part is, if you don't, and if you
• 7:14
  Speaker 1: pass this on to a caretaker to fill up or
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  Speaker 1: to reply for you, let's say, is it necessarily an
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  Speaker 1: accurate self-response?
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  Speaker 2: Yeah, so it's important to get the response from the
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  Speaker 2: caregiver because they are cognizant that someone with dementia is
• 7:28
  Speaker 2: not able to report for themselves. So when they fill
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  Speaker 2: up the, the survey online, they will have to check
• 7:34
  Speaker 2: whether it's from the patient themselves or itself or its
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  Speaker 2: caregiver reported.
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  Speaker 2: And we know that not everyone is tech savvy. To
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  Speaker 2: be honest, we, we have about half of the patients
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  Speaker 2: filling up online. The other half, we have nurses and
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  Speaker 2: a coordinator who goes to these clinics, and they take
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  Speaker 2: note which patients have not been able to fill it
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  Speaker 2: up online. They'll then do the do the distress thermometer
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  Speaker 2: with them on a hard copy face to face. And
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  Speaker 2: this is how we try to ensure that
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  Speaker 2: Um, we try to capture as many patients as possible
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  Speaker 2: when they come for the appointments. So there's still a
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  Speaker 2: human element to it. And in fact, the human element
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  Speaker 2: is incredibly important because patients tend to like to, they
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  Speaker 2: feel comfortable talking to a nurse, you know, and telling
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  Speaker 2: them about their needs and burdens, and that's extremely important
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  Speaker 2: that often technology cannot entirely replace.
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  Speaker 1: Yes. And how about the idea of the motor skills
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  Speaker 1: and the access to smartphones and devices.
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  Speaker 2: So for that we will have to have
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  Speaker 2: do it for
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  Speaker 2: them.
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  Speaker 1: So you see, that's my issue like, yes, it's important
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  Speaker 1: to hear from the caregiver as well, but this digital
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  Speaker 1: distress thermometer rather is meant to ascertain their needs as well, right?
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  Speaker 1: And so they might not be able to accurately or
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  Speaker 1: maybe they don't want to tell the caregiver to fill
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  Speaker 1: this in because they're embarrassed to tell the person so
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  Speaker 1: like please fill this in for me or something like
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  Speaker 1: that.
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  Speaker 2: No, I, I, I don't think, I don't think we, we,
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  Speaker 2: we have the issue much. I think most of the
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  Speaker 2: time the patients do want to convey what they're going
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  Speaker 2: through and the caregivers tend to be their close.
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  Speaker 2: Or main caregiver and they usually will give us a
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  Speaker 2: relatively accurate accurate representation of what the patient needs are.
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  Speaker 1: So here's the thing launch in 2004, 1 year anniversary
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  Speaker 1: so 024 reaching something like 2000 patients and the goal
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  Speaker 1: is what, 3600 patients by 2030, right?
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  Speaker 1: And
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  Speaker 2: annually, so we hope to intervene for 3600 patients annually
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  Speaker 2: across most of the disciplines um at NNI.
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  Speaker 1: Got it, because right now it's mainly about integrating palliative
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  Speaker 1: care and standard neurological care, right? Yes, exactly. So how
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  Speaker 1: How often are you realistically able to discuss the individual cases?
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  Speaker 1: It must be very time consuming to do that.
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  Speaker 2: Yeah, so, you know, we, we've done about nearly 2000
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  Speaker 2: or 2300 responses. We've gotten that so far. Um, there
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  Speaker 2: have been 500 plus um discussions in the multi the
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  Speaker 2: multidisciplinary multidisciplinary team, right, for patients who have a DT
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  Speaker 2: score of 6 or more. Out of those, about 200,
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  Speaker 2: 100 to 200 require a bit more intervention. So these
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  Speaker 2: are the ones that the team will spend more time
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  Speaker 2: focusing on.
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  Speaker 2: Most of the time, the interventions can be done through
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  Speaker 2: standard means or the doctor will usually intervene in the
• 10:26
  Speaker 2: clinic by adjusting medication, but it's the ones that really
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  Speaker 2: have significant needs that I mentioned, the 1 to 200,
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  Speaker 2: that we really want to capture and some examples would
• 10:36
  Speaker 2: be a patient who keeps defaulting his appointments. And you know,
• 10:41
  Speaker 2: instead of just saying, oh, he didn't come again, OK,
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  Speaker 2: then could be
• 10:43
  Speaker 1: a functional issue. Maybe I don't have a relative to
• 10:46
  Speaker 1: take me, maybe I can't get transport.
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  Speaker 2: Yeah, exactly. So what the MDT team managed to find
• 10:51
  Speaker 2: out was that there was an issue in the family,
• 10:54
  Speaker 2: not only someone not being able to take him there,
• 10:56
  Speaker 2: but the family did not quite understand why he had
• 10:58
  Speaker 2: to go for an appointments. So you know, you had
• 11:00
  Speaker 2: the social worker, psychologists all coming in and the nurses
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  Speaker 2: trying to do a family conference so that everyone could
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  Speaker 2: understand what he was going through, and then subsequently we
• 11:09
  Speaker 2: could find ways to get him to the appointment. Oh
• 11:11
  Speaker 1: wow, that's awesome.
• 11:14
  Speaker 2: That's one good example of how it works.
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  Speaker 1: Social workers are part of the team as well?
• 11:19
  Speaker 2: Yes, they are
• 11:20
  Speaker 1: fantastic. OK, so here's the thing, we are, I'm gonna
• 11:25
  Speaker 1: ask the very Singaporean question. Does it, does it cost
• 11:27
  Speaker 1: more to be a part of the program?
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  Speaker 2: No, so currently it's funded, uh, we are we're funded
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  Speaker 2: by the Lian Foundation for this project, so that it's
• 11:37
  Speaker 2: free for the patients at this point, but they will
• 11:39
  Speaker 2: still have to pay for their standard regular care from
• 11:41
  Speaker 2: the doctor.
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  Speaker 1: Got it. So no change in that regard, but that, yeah.
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  Speaker 2: But yeah, but we are funded for additional manpower for
• 11:49
  Speaker 2: the social worker and for the psychologists and nurses.
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  Speaker 2: Well,
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  Speaker 1: I love
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  Speaker 1: that. I love that. So, um, associate Professor David Lowe, who's,
• 11:58
  Speaker 1: you know, Deputy Chief Executive officer, and then I talked
• 12:01
  Speaker 1: about how this is a paradigm shift in how you
• 12:02
  Speaker 1: care for patients with dementia and ALS and other neurodegenerative diseases.
• 12:07
  Speaker 1: How has that, talk to us about that paradigm shift.
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  Speaker 1: I mean, how do you see that playing out, especially
• 12:13
  Speaker 1: in the next
• 12:14
  Speaker 1: 34 years of the program.
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  Speaker 2: So the paradigm shift, there, there are some key features
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  Speaker 2: of that. Firstly, it's bringing palliative care slash supportive care,
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  Speaker 2: as I mentioned, away from the the end stage of
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  Speaker 2: disease right at the start. So from the time of diagnosis,
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  Speaker 2: that's the first one. Secondly, it's sort of changing the
• 12:32
  Speaker 2: mindset of all the healthcare professionals looking after the patient.
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  Speaker 2: So what this program is to do is to educate
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  Speaker 2: and upskill all our neurologists, neurosurgeons, nurses, and allied health
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  Speaker 2: staff and NNI in the basics and foundation of palliative
• 12:48
  Speaker 2: care principles. The point is that every doctor and nurse
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  Speaker 2: should be able to manage or at least have some
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  Speaker 2: understanding of palliative care, so that it doesn't boil down
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  Speaker 2: to just one neuropalliative specialist per se, right?
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  Speaker 2: So that in a way is also a paradigm shift
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  Speaker 2: where we will try to upskill the entire institution of
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  Speaker 2: healthcare professionals in the basics of palliative
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  Speaker 2: care.
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  Speaker 1: Love that. Now, what are we seeing in terms of
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  Speaker 1: how you have been screening people to be a part
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  Speaker 1: of the program? Has this been happening at the community
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  Speaker 1: level in the polyclinics, or does it only happen with
• 13:21
  Speaker 1: your specialists to be, to be screened for and to
• 13:23
  Speaker 1: be a part of this program?
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  Speaker 2: No, so currently the the screening of the DT is
• 13:27
  Speaker 2: only within the National Neuroscience Institute specialist outpatient clinics, not
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  Speaker 2: in the community at this point. Yeah,
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  Speaker 1: will it reach the community, do you think at the
• 13:35
  Speaker 1: community level?
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  Speaker 2: I mean, I think that that will be the dream
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  Speaker 2: and that will be the goal where palliative care is
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  Speaker 2: so ingrained in all our mindsets, even in community care.
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  Speaker 1: Aging in place is very important also, you
• 13:46
  Speaker 2: know, yeah, yeah, yeah, exactly. And as part of this,
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  Speaker 2: I think we work with community partners to try to
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  Speaker 2: upskill them. So community partners are already very, you know,
• 13:55
  Speaker 2: upskilled and trained in palliative care.
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  Speaker 2: What they are going to learn from this program and
• 14:01
  Speaker 2: how we aim to learn from them as well is
• 14:04
  Speaker 2: that they will be educated in neuroscience care. So for example,
• 14:08
  Speaker 2: there's a basic neuroscience where community partners can can learn about,
• 14:13
  Speaker 2: you know,
• 14:13
  Speaker 2: What epilepsy is, how to manage epilepsy, how to identify
• 14:17
  Speaker 2: red flags of headaches, how to manage Parkinson's disease, what
• 14:20
  Speaker 2: are the red flags of stroke. So in a way,
• 14:22
  Speaker 2: we hope that while we learn about about palliative care
• 14:25
  Speaker 2: from our partners, they can also learn more about neuroscience
• 14:28
  Speaker 2: care and neuroscience patients.
• 14:31
  Speaker 1: Interesting to read this question from one of my listeners
• 14:34
  Speaker 1: that just came across on WhatsApp 963-01938. How often will
• 14:38
  Speaker 1: they have this distress thermometer sent to them?
• 14:41
  Speaker 2: That's a very good question. So actually, it's sent to
• 14:44
  Speaker 2: them before every clinic appointment. And the reason for that
• 14:47
  Speaker 2: is because someone with Parkinson's disease as an example, they
• 14:52
  Speaker 2: see the doctor 4 times a year in the clinic,
• 14:54
  Speaker 2: their symptoms and care needs will fluctuate over time throughout
• 14:58
  Speaker 2: the course of the illness.
• 15:00
  Speaker 2: The illness can last from 5 to 10 years or more.
• 15:03
  Speaker 2: So we try to do it before every clinic because
• 15:05
  Speaker 2: even though, you know, they come 3 times a year,
• 15:08
  Speaker 2: those 3 times they might be OK, but the 4th
• 15:10
  Speaker 2: time they may be going through something, they may have
• 15:12
  Speaker 2: a decline or deterioration in their physical condition. That's why
• 15:16
  Speaker 2: it's important to do the screening every clinic visit.
• 15:19
  Speaker 1: Thanks to my listener for that WhatsApp, great point. Um,
• 15:21
  Speaker 1: just to wrap things up.
• 15:23
  Speaker 1: As I mentioned, technology and health coming together is one
• 15:26
  Speaker 1: of my key interest areas right now, and I wonder
• 15:29
  Speaker 1: whether there was any discussion about including telemedicine as part
• 15:34
  Speaker 1: of neuropal.
• 15:36
  Speaker 2: Well, we already do telemedicine and NNI, so we have
• 15:40
  Speaker 2: tele consultations. So in our clinic, we do video consults
• 15:44
  Speaker 2: with our
• 15:44
  Speaker 2: patients.
• 15:45
  Speaker 1: That will be very useful for people that can't, especially,
• 15:47
  Speaker 1: you know, with,
• 15:50
  Speaker 2: yeah, exactly. So that's been happening and I for quite
• 15:52
  Speaker 2: some time since since since COVID. Um, so these patients
• 15:55
  Speaker 2: who have video consultations will also get a chance to
• 15:58
  Speaker 2: fill up this survey because the link will still be
• 16:01
  Speaker 2: sent to them before their appointment.
• 16:04
  Speaker 1: How many more years do we have,
• 16:09
  Speaker 2: how many?
• 16:09
  Speaker 1: How many?
• 16:12
  Speaker 2: We have about
• 16:13
  Speaker 2: 4 years left. Yes, a 5 year program, so we
• 16:15
  Speaker 2: started 1 year ago, we have about 4 years left.
• 16:18
  Speaker 2: But it's just something that that beyond the 5-year funding,
• 16:21
  Speaker 2: we it it will continue because as we said we will,
• 16:25
  Speaker 2: we are trying to change the mindset and make the
• 16:27
  Speaker 2: standard of care.
• 16:28
  Speaker 2: So the point, the plan is for the program to
• 16:31
  Speaker 2: carry on even after the 5 years of funding is up. Right,
• 16:34
  Speaker 1: we're we're proving concept here. We're making sure that it
• 16:36
  Speaker 1: works and then can trickle it down to every department
• 16:39
  Speaker 1: and hopefully community level one day as well. Exactly, yeah. Pra,
• 16:42
  Speaker 1: always a pleasure to have you on board to help
• 16:44
  Speaker 1: us raise awareness of this. Thank you for your time.
• 16:46
  Speaker 2: Thank you. Thank you for having me. She's
• 16:48
  Speaker 1: associate professor at Lan Ong, Senior Consultant neurology at NNI
• 16:51
  Speaker 1: and the co-lea on Neuropal. Now, 2000 people already a
• 16:56
  Speaker 1: part of the program. Uh, this was rolled out, this
• 16:59
  Speaker 1: comprehensive service that kind of brings together the idea.
• 17:02
  Speaker 1: of uh important neurodegenerative diseases and how they need to
• 17:08
  Speaker 1: be taken care of in a more holistic way, bringing
• 17:10
  Speaker 1: together palliative care, bringing together the neuro component as well.
• 17:15
  Speaker 1: Thanks for joining me for another edition of Health Matters
• 17:17
  Speaker 1: here on CNA 938.
• 17:24
  Speaker 1: Before making any decisions based on the information in our program,
• 17:28
  Speaker 1: please consult a medical professional.