Print This PostMy name is Victoria, and I’m an early career researcher at the Bristol Brain Centre in Southmead Hospital. I’m writing regular updates to share our work on a project that aims to influence which research outcomes clinical researchers include in their studies involving individuals with mild cognitive impairment (MCI). We’re doing that by spending the next year developing a ‘core outcome set’.
Happy new year! As we enter a new year, lots of us are reflecting on 2024 and seeing what we’ll take with us and what will change for 2025. In a similar fashion, our MCI Core Outcomes Study is also moving into the next stage, after gathering potential outcomes from so many wonderful participants in 2024. I was fortunate enough to interview 41 individuals towards the end of last year to find out what outcomes matter for them in MCI. Most of these participants had been diagnosed with MCI themselves, often in the few months before speaking with me, but I’ve also spoken with family members and professionals, including researchers and clinicians.
This blog isn’t about the results of those interviews – we’ll be publishing those across a series of papers in 2025, and I wouldn’t be able to do them justice here in a quick blog. But I thought people might be interested to know how we found people to take part, and the kinds of questions we asked to get our data from this part of the study.
Mapping the Journey: A Visual Guide to Developing Essential Outcomes for MCI Research
Finding our experts
We wanted to recruit a range of participants – people who had experience of MCI through different lenses. Patients with MCI, as well as family and/or friends of patients with MCI, were invited to contribute outcomes that matter to them, as people who understand and have experienced what these diagnoses and symptoms really mean day-to-day, and for their future. Academic, clinical, and care professionals were also recruited, to bring their expertise as people directly involved in patient care and research. These are our “stakeholders” after all, so they are driving the core outcome set. Previous studies have found that when you include patients in the discussion around what outcomes matter most in treatment, they’re more likely to talk about outcomes surrounding life impact (so, functioning across different domains and quality of life) than those which don’t involve patients directly. We’re still analysing the results from the interviews, but it will be interesting to see if there’s any differences between the outcomes mentioned by patients, family members, and professionals.
We worked with researchers and clinicians at four NHS sites across England (Bristol, Manchester, Avon, and Cornwall) to identify patients with recent diagnoses. The local teams identified patients, asked for consent for me to contact them, and screened their medical records after consent to confirm eligibility (mainly, a recorded diagnosis of any kind of MCI within the last 12 months). I was then responsible for talking the study through, receiving consent, and doing the interviews.
As we were going along, we also recorded and reviewed demographic characteristics (e.g., gender, ethnicity, employment status) and the aetiology of MCI (e.g., Alzheimer’s disease, vascular, unknown), which helped us to prioritise interviewing those who had characteristics under-served by research or who were under-represented in our study so far. I’m used to recruiting to a sample size for quantitative analyses and power, so recruiting until we felt we had a breadth, depth, and diversity of experience was a little challenging. But reflecting on the interviews, I think we had a good diversity of experience of MCI. We had some people who felt their symptoms were just related to old age and weren’t really affected by them and people who’d had to stop working or were finding it hard to adjust to having MCI and the fear of incipient dementia. We had people with both amnestic and non-amnestic and multi- and single-domain MCI. We had people who lived alone, those who had family but didn’t have or indeed need support for their MCI, and those who received varying amounts of support from a partner or relatives. MCI is such a heterogeneous syndrome, so we tried to capture this as best we could.
In terms of practicalities of doing the interviews, flexibility was key. Finding time in clinicians’ and researchers’ busy schedules meant doing before or after work or even on-the-go whilst they were moving between appointments or meetings. Whilst most were happy with a video or telephone call, others felt more comfortable face-to-face, so there were a few home visits and a couple of clinic visits too.
What questions we asked
The ultimate goal was to find out what outcomes matter to people with MCI, so we can include them for consideration in a core outcome set. But, the word “outcome” can mean different things to different people, and we wanted to make the conversation flow comfortably and not feel too “academic”. So, we phrased it in a lot of different ways and asked from different angles. We asked what symptoms they had, what they would want a new treatment (e.g., a lifestyle change or a medication) to do for someone with MCI, and what their priorities in life were and if these changed after their diagnosis. We also asked questions about why they initially went to their doctor and whether they felt any parts of having MCI were particularly difficult to manage with their current strategies if they used any.
A semi-structured interview approach, using a topic guide with questions, helped keep the interview on track for the most part, but allowed flexibility where needed – so we could follow a train of thought. Sometimes, this was incredibly helpful for our study questions, but sometimes this was just about respecting the perspectives and stories someone wanted to share that day, even if it didn’t directly answer our questions. I found that some of the time, people weren’t answering the question I’d asked – they were answering the question they wanted me to ask. And these were the conversations that helped me better understand what it was like to receive or give a diagnosis where there isn’t a treatment right now – and we’ll be analysing these insights over the next year through thematic analysis.
Next steps
As I’m writing this, I’m taking a quick break from transcribing and analysing the interviews. We’re doing a content analysis, essentially pulling out any potential outcomes and seeing if they fit into an existing outcome from our literature review or represent something new. Coming up with the long list from both the systematic review and interviews is a really iterative process, as we’re collapsing and expanding outcomes to come up with meaningful outcomes which are distinct from each other and documenting the decisions we’re making as we go. We need to end up with a reasonably sized number of outcomes (less than 100) to ask our participants to rank, so we’re left with only the most core outcomes which most people agree are the most important to measure in research. It’ll be a balance between making sure we’ve captured everything, whilst making sure the survey isn’t too burdensome for participants. So, we’ve still got a way to go, and I’m glad to have Dementia Researcher readers join in our journey.
Speaking of which, we’re looking for researchers and/or clinicians with experience or expertise in MCI to take part in the surveys. Please get in touch (comment below or message me on the Dementia Researcher app) if you’d be interested, we’d love to hear from you.
Victoria Gabb
Author
Victoria Gabb is a Senior Research Associate in Sleep & Dementia Neuroscience at University of Bristol. Victoria is working on her PhD through publication and she is currently working on an important project to develop ‘Core Outcomes’ for Mild Cognitive Impairment. Her blogs on dementia researcher will be a way of sharing the progress of her work, to improve transparency, share the process and as a way to involve others – sharing the work, the process, and life in the pursuit of research.
Dr Jodi Watt
