Patient preferences for NAFLD care
Research type
Research Study
Full title
Patient preferences for the delivery of the non-alcoholic fatty liver disease (NAFLD) clinical pathway: let’s move towards patient-centred care
IRAS ID
329054
Contact name
Theresa Hydes
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 2 months, 26 days
Research summary
METHODS
This was a qualitative study. We recruited people from the community, primary and secondary care at risk or living with fatty liver disease through advertisement with posters, fliers or text message directing people to our study website https://gbr01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.nafldpp.co.uk%2F&data=05%7C02%7Cberkshire.rec%40hra.nhs.uk%7Cb5d63f46130c45fceab708dce919b002%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638641543755105365%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=qEuJnAbHf26iCuK4sDF4gaIohqL9xz3I4qkMQ8DmWBo%3D&reserved=0. An interview guide was developed by the multidisclipinary research team and a patient and public involvement group and updates as the semi-structed interviews and focus groups took place. All discussions were transcribed (converted from audio to a written document) and anlaysed by three qualitative researchers to look for emergent themes.RESULTS
In total we spoke to 33 participants. 12 people had fatty liver disease with experience of secondary care, 12 had experience of primary care only and 9 had risk factors but had not been investigated or not given a diagnosis of fatty liver disease. Participants were aged 31-78 years (average age 54 years); 10 were men (30.3%) and 23 were White British (69.7%). Over half of patients were from different regions across the NorthWest (19/33, 57.6%) with others recruited from the South East n=6, South West n=3, Wales, n=3, North East n=1 and Midands n=1. All of the 18 semi-structured interviews were carried out by the same trained qualitative researcher and two focus groups with conducted for people with fatty liver disease known to primary and secondary care.The main themes are described below.
1. Patient and public knowledge regarding MASLD
Most participants had a limited awareness of MASLD prior to their diagnosis. Those ‘at risk’ of developing MASLD believed that the condition was uncommon and unimportant compared to other conditions, such as cardiovascular disease, diabetes, and cancer, because no public health campaigns existed: “I do think that if this is very common, then a lot of more education would be focused on (MASLD)” - PID33.
There was an overwhelming preference for the previous nomenclature non-alcoholic fatty liver disease (NAFLD) over MASLD (19/24, 79.2%) which was perceived as simpler and more descriptive than MASLD. However, there was also a widespread misconception that alcohol was a major causal factor, and one participant suggested the inclusion of ‘alcohol’ in NAFLD “mislead” people (PID32).
All participants believed that poor diet and lack of exercise were the main causes of MASLD and highlighted a range of barriers to living a healthy lifestyle including knowledge of ‘good’ health, sedentary job roles, lack of advice from healthcare professionals (HCP) and convenience and cost of unhealthy food options. Further education of what “constitutes a healthy meal” (PID8) and “practical” (PID11) guidance were suggested as preferred ways to help to facilitate lifestyle change at a population level and reduce the prevalence of MASLD and its risk factors.2. Screening for MASLD
Despite been informed prior to this discussion point that there was no specific pharmacological treatment for MASLD and that MASLD does not lead to significant health consequences for most people, all participants (those at risk and with MASLD) expressed a preference to have screening for MASLD if given the opportunity. This consensus was predominately based on the belief that they wanted the opportunity to prevent MASLD from progressing. Participants felt strongly that screening would act as a motivating factor for them to make positive lifestyle changes aimed at preventing disease progression: “The earlier the better to see how I can prevent it from reaching the end stage liver disease.” (PID29) and “Well, I'm already changing my lifestyle currently [due to diabetes], but yes, it would provide extra motivations to facilitate lifestyle change.” (PID33) Of 22 paticipants asked, 17 (77.3%) thought that screening should be available to the general population. However, many acknowledged the constraints of the NHS, suggesting that screening efforts should prioritise those who are most likely to benefit: “If you've got limited resources, then you have to start with those who might get the most out of it.” (PID31) Participants suggested that prioritisation should be based on age, in common with other screening programmes, although no specific age range was agreed upon. Nine participants (40.9%) recommended prioritising individuals considered to be ‘at risk’, such as those who are overweight or have type 2 diabetes. It was also suggested that screening should be incorporated into current diabetes management: “If it's that common and that is the major cause of it, then I think this falls into that whole condition and treatment thereof.” (PID8) Participants were questioned regarding their preferences for being screened for fat in the liver (via ultrasound) or liver scarring (via blood tests or fibroscan) and at stage in their life they would want to be screened for liver disease, in an attempt to understand whether patients wanted to be diagnosed for liver disease at an early stage where it would be more reversible, or a later stage where is might have more health consequences. This topic was complex for participants to understand and was further confounded by the convenience and invasiveness of the tests themselves and participants prior experience of these. The majority of participants did however express an opinion that they wanted to be diagnosed early in order to be able to make lifestyle changes while they were in otherwise good health (need quote). Participants were also interested (how many?) having been show a figure explaining the different stage of liver fibrosis at where they were on that scale (need quote).3. Preferences for tests used for screening and risk stratification
Participants reported that they were comfortable undergoing simple blood tests as an initial screening method, and other non-invasive techniques, such as Fibroscans and ultrasounds, were also well received. For ongoing testing after a diagnosis, a linear approach was preferred, starting with less invasive measures before considering a liver biopsy: ““If I had to, yeah but I’d rather have something else first because it’s quite painful so you can do a test that’s non-invasive first. I’d rather have that.” (PID2) Twenty of 24 participants asked (83.3%) said they would be willing to undergo a liver biopsy, but only if it was deemed necessary by their HCP: “If the GP or the hospital think we need to do a biopsy on this, then fine. That's got to be done. That's how I see it.” (PID6) Participants were generally open to undergoing multiple different tests, including repeat tests, to achieve greater accuracy for disease staging. Participants were not overly concerned about the high rates of false positive results known to be associated with non-invasive tests as long as they had been clearly informed beforehand about the possibility of this, “It makes sense for more to be done to get a more accurate result. You know, if obviously one could be a bit misleading then get the other to verify or, you know, counter the result.” (PID16)4. Disease Monitoring
Ongoing monitoring of the disease affected participants’ perception of MASLD as a potentially serious condition. Lack of follow-up and ongoing support for the management of the disease led participants to question the seriousness of MASLD: “It can't be too much of a problem because nobody's doing anything.” (PID8)All participants agreed that 1-3 years was a reasonable follow-up period, although some suggested the frequency should be dependent on the stage of liver scarring. Many participants diagnosed with MASLD stated that they had not been received sufficient follow-up and cited a disparity in the healthcare provision for MASLD compared to other conditions: “I mean, if you compare it to diabetes, for example, or if you're showing as pre-diabetic, you'd have much more regular tests to see where you were progressing.” (PID7) and “I have asthma and I'm monitored really regularly and sometimes quite unnecessarily because it's quite… it doesn't really affect my lifestyle. Whereas in comparison, this one, like everyone said it's [the follow-up] is non-existent. It was a shock and I've just been left in the dark.” (Focus Group 1, S5) Most participants reported a strong desire to be reviewed more regularly and suggested that ongoing medical surveillance would provide an opportunity to evaluate the impact of any lifestyle changes made on their disease progression and general health, and therefore serve as a motivating factor for maintaining a healthier lifestyle: “12 months later, you had another scan to see if it had reduced, at least then I'd know myself whether I was doing the right thing or not.“ (PID9)
5. Communication of Diagnosis
Several strong themes emerged regarding the information that participants wanted to be told at the time they were diagnosed with MASLD and subsequent appointments.
The language used and the way that the diagnosis was communicated to participants affected their perception of MASLD as a potentially serious condition, and consequently affected the participants’ response and motivation to alter their lifestyle. Terms such as “a bit of fat in the liver” led participants to perceive diagnosis as insignificant: “It was explained to me as, oh, that's okay. That's nothing. That is everybody has fat in their liver. So that made me feel like, well, that's normal.” (PID6) There was a clear consensus from participants that they wanted further information about the diagnosis, including their stage of liver scarring, the possible trajectory of the disease, and advice for how to manage the condition: “I think the more knowledge, the more you can work with it and try and work with the professional to try and, counteract it” (PID9). Some participants stated that visual aids showing the potential progression of the disease could be used to facilitate understanding: “So I'd want them to show me something, even if it was like a scale from healthy liver to cirrhosis and go, right, this is where you are at.” (PID1) Participants stated that understanding that MASLD can be revered was hugely important and valuable to them and could serve to motivate participants to engage in lifestyle modification: “I needed to lose some weight and that would probably reverse it, cut out alcohol and various other things. So, I lost a couple of stone over sort of six, nine months.” (PID7) Many participants said they did not receive sufficient information from their HCP, so sought information elsewhere, including online resources or private healthcare. “Signposting” (PID7) to appropriate information was suggested as been an important step to help patients access accurate information and avoid the need to search the internet themselves which could lead to unnecessary worry: “There’s a lot of them so you can’t tell which one is real. When clarity from these apps comes from the health care professionals” (PID5); “Looking for things on your own, you're going to come across things that is misinformation or will actually make you worry and cause you more stress” (PID6).
To explore this further, participants were asked to rank the importance of action points from clinic in order of importance (Figure 1). Understanding test results and personal risk factors for liver disease were ranked as most important, over access to pharmacological therapies or surgery for weight loss and the opportunity to participant in a clinical trial, echoing the themes of education and good communication discussed above.6. Preferences for Healthcare Delivery
Participants were asked to rank aspects of healthcare delivery in order of importance. These could be pertinent to any patient pathway although participants were asked about these in relation to MASLD. Ability to access services locally and seeing the same HCP at each appointment were ranked most highly (Figure 2). Participants suggested that local services were preferable for accessibility and had greater appointment availability. Participants said seeing the same HCP allowed them to build “rapport” (PID1) with their GP: “instead of explaining again and again, it's good to see the same person. And we'll be comfortable.” (PID10). Factors considered least important were face-to-face appointments and use of technology to communicate with HCPs. However, participants suggested that the mode of appointment should be context-dependent: “I think it's important to have face to face appointments for some things like, breaking bad news or discussing options or sharing results.” (PID3) Participants stated that the use of technology was appropriate in other circumstances and could further increase appointment availability.CONCLUSION
The overwhelming finding from this study is the strong preference from patients and the public that communication is improved regarding fatty liver disease. The need for better communication was identified at multiple levels. Firstly to prevent the condition and its risk factors (obesity and diabetes) participants told us they wanted more public health campaigns about this condition. Participants did want to be screened for fatty liver disease as they thought the diagnosis would motivate tjem to make lifestyle change but they wanted to know what stage of liver disease they had along with information that it was reversible with a healthy lifestyle. Participants wanted much more information about how to loose weight and what constituted a healthy diet including signposting to other sources if time did not allow for this in clinic. Partipants were accepting of the fact that tests used to determien the stage of fatty liver disease could be falsely raised and did not think this would cause distress as long as the health care practitioner explained this beforehand. Finally for people living with multi-morbidity (more than one health condition) attending multiple appointents, participants understood the need for this but wanted better communication between health care providers themselves.
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: N/A
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Pending
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected: 28/02/2025
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: Pending
If yes, describe and/or provide URLs to materials shared and how they were shared:
If pending, date when feedback is expected: 28/02/2025
If no, explain why they haven't:
Have you enabled sharing of study data with others?: No
If yes, describe or provide URLs to how it has been shared:
If no, explain why sharing hasn't been enabled: Data will be shared in the form of a peer review publication which is in progress
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: No tissue samples were collected in this study.
Submitted on: 10/10/2024REC name
South Central - Berkshire Research Ethics Committee
REC reference
23/SC/0299
Date of REC Opinion
16 Aug 2023
REC opinion
Favourable Opinion