Introduction
Methods
Recruitment
Procedure
Questions
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Identify the medical journey that a typical patient with NASH goes through.
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Explore the patient’s psychological and emotional attitude toward NASH.
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Understand the burden of NASH on the patient’s daily living, finances, and employment.
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Assess physician–patient interaction regarding NASH, including quality of the relationship, emotions during consultations, and the patient’s assessment of physician attitude toward NASH.
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Identify disease management approaches and patient expectations regarding potential treatments for NASH.
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Evaluate current unmet needs, expectations, acceptable risk, and value drivers of future treatment options.
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Solicit guidance on the optimal expected treatment outcome for short- and long-term disease management in NASH.
Qualitative Analysis of Patient Responses
Results
Participant Characteristics
Qualitative Patient Insights from OBB
Patient Knowledge and Perceptions of NASH
Emerging pattern | Patient quotes |
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Lack of awareness | “I have lived with it all my life, I can manage it.” (UK patient, fibrosis stage F1) “I often do not even think about it as I do not believe I have symptoms related to it […] I think of a disease as something more serious.” (UK patient, fibrosis stage F1) “Many have it and do not even notice.” (UK patient) |
Uncertainty | “I am always worried about my long-term health […] the future is uncertain and I think the condition will cut my life short.” (US patient, fibrosis stage F2) “Sometimes can’t sleep as worried about my future health.” (UK patient) “I certainly do not know if there is anything I should be doing right now and if I am in any danger health wise at present due to this condition.” (UK patient) |
Fear | “I wonder if I need a transplant one day. That scares me.” (US patient, fibrosis stage F2) “The imminent progression of it to permanent liver damage petrifies me.” (US patient, fibrosis stage F3) “Biopsy, appointments, hospitals, feeling scared.” (UK patient) “I guess the biggest challenge is always having in the back of my mind that my condition can worsen. That my liver might eventually be the cause of my death.” (US patient) |
Guilt | “The idea that I caused it myself is very sobering, it creeps up on you.” (UK patient) “I have never been a drinker, it’s amazing I should have a liver condition […] I feel sorry for myself.” (UK patient) |
Lifestyle-related | “Can be reversed by healthy lifestyle.” (UK patient, fibrosis stage F1) |
NASH Diagnosis, Monitoring, and Management
Emerging pattern | Patient quotes |
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Embarrassment at NASH diagnosis | “I felt embarrassed because I had an unhealthy lifestyle—I put on a lot of weight.” (UK patient) “I felt embarrassed that this happened to me because I felt it is my fault.” (US patient) |
Perceived lack of physician support | “I was concerned of course and confused as to why my doctor wasn’t doing more.” (US patient, fibrosis stage F1) “I felt let down that they expect you to go away and be ok with no information as they say fatty liver is common.” (UK patient) “Someone sitting me down and talking me through what I should and shouldn’t do, like caring support to give me hope, that’s all I want.” (UK patient) “Doctors should not wait until the condition gets to stage 3 to start taking it seriously.” (US patient) “I really think I’m missing medical support. No one has really explained my prognosis or any treatment options. I am kind of in the dark.” (US patient) |
Need for more education on NASH | “Better education would be good, guidance to eating habits and foods to help improve or reduce the issue. I have been taking the pills long enough now not to need reminding. I think mainly support from GP or specialist.” (UK patient) “A NASH information pack would be nice, also with plenty of information about the drug and how it works.” (UK patient) “Detailed information about NASH, how to care for your liver, dietary info, supplement info, who to contact if you need support. I would like a physical copy, but also an online format.” (UK patient) “What is missing is a(n) educational course designed for those with NASH because I have had to do a lot of research on my own to seek and gather knowledge about NASH. I would like a(n) educational DVD designed for people dealing with NASH.” (US patient) |
Living with NASH—Symptoms, Comorbidities, and Impact on Patients’ Life
Emerging pattern | Patient quotes |
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Symptoms (fatigue) | “It hasn’t really affected my life […] the only impact is that I get very tired all the time.” (UK patient) “Yes there are days when I’m too tired to physically make it into the office.” (UK patient) “I notice that I tire more from doing less.” (US patient) “I miss a lot of things my kids are into, because I am just too tired.” (US patient) “I didn’t get diagnosed until I stopped working. I was always tired which could have been a sign that I wasn’t aware of.” (UK patient) |
Social life | “Before the diagnosis I ate what I wanted, partied and drank, so socially it’s been a massive change.” (UK patient) “After the diagnosis I felt really helpless, until I made the decision to change my eating habits. When I changed my eating habits I did not want to go out because I couldn’t eat like everybody else.” (US patient) |
Impact on work | “I feel as if I have not the energy to take on a full-time job, but I don’t know whether this is due to my liver condition or my MS or just being a busy mom.” (UK patient) “I cannot do heavy labor anymore and had to be shifted to a back office position.” (US patient) “I notice that I get tired during the day even after having a full night’s sleep. It affects the tasks I can get done during the day.” (US patient) “I work for myself, so it does not impact my working life. I plan my schedule around doctor’s appointments.” (US patient) “There is no impact on my day to day job but when I had a flare-ups before diagnosis I thought it was flu and had time off as I felt awful.” (UK patient) |
“The areas of my life that have become troublesome include adherence to appointment schedule and changing eating habits. I have to take time off of work and adjust my diet. I must use sick days to take off. I must use a recipe planner to eat better. This is all very inconveniencing.” (US, male)
“I cannot do heavy labor anymore and had to be shifted to a back office position.” (US patient)
Key Unmet Needs in NASH
Emerging pattern | Patient quote |
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Lack of treatment as a key unmet need | “My biggest unmet need is not knowing my prognosis.” (US patient) “It’s just the dissatisfaction that there is no cure for liver disease yet.” (US patient) “My biggest unmet needs are dealing with fatigue and itching.” (US patient) “I would like to get my liver enzymes down as low as possible and that is my unmet need.” (UK patient) “The need for a cure really…!” (UK patient) |
Mixed opinion toward medical treatment vs lifestyle intervention | “If there was a drug that could maybe stem progression that would be good. But there is a danger that I would then rely on that… not change my lifestyle maybe?” (UK patient) “I’d definitely prefer drugs. These lifestyle changes aren’t [a] sure thing. I trust medicine.” (UK patient) “I really feel I take enough medication and not having been a drinker I don’t have to change my lifestyle due to NASH.” (UK patient) “I take so many meds that adding more wouldn’t phase me. I have already had to make major changes in my diet. Any more changes would be extremely difficult and unwelcome.” (US patient) “I prefer lifestyle changes because you don’t have to worry about side effects.” (US patient) “I prefer lifestyle alterations over prescription meds any day because with the drugs there may be long-term side effects that show up later in life. Drugs are quicker and can be targeted, but lifestyle changes overall are safer.” (US patient) |
Reversal of liver damage as an ideal outcome of future NASH treatment | “I would hope treatments could reduce or reverse the damage to my liver.” (US patient) “Number 1: Stopping of continual decay of the liver within a year. Number 2: Feeling overall better within a year. Number 3: Ruling out the possibility of an organ transplant within 5–10 years.” (US patient) “1st: No more symptoms—within 6 months; 2nd: good test results—within 8 months; 3rd: high quality of life—within 12 months” (US patient) “Less tired (within a few months)…no flu-like symptoms (within a few months)…no progression (over years).” (UK patient) |