Participants’ demographic details (Table 1)
Twelve patients (of 22 patients approached) participated, together with five close family members (of eight approached). Patient participants were predominantly male (60%) with a median age of 51 years (range 31-69 years), and had a variety of liver diseases, the largest group being alcohol-related liver disease (50%). Close family members were mainly male and were a mix of parents or sons supporting the patient. Health professional participants were seven doctors, six nurses and one Allied Health Professional.
Preparation for the out-patient appointment
Of the 12 patients interviewed, seven had attended their appointments by themselves and the remaining five attended with either a family member (spouse or adult child), or with a friend. Those attending with a family member/friend, reported that the presence of this companion was useful as an additional information gatherer, as an aid to information retention, or as an advocate if the patient had memory or cognitive issues.
Of the 11 patients who responded, most had done some preparation for their appointment (10/11) as they had either discussed with their family members the issues they wanted to raise with the health professional (5/11) or had specifically prepared a list of questions for the appointment (6/11). Two said that they did not prepare. One explained that it was difficult to prepare until he had spoken with the health professional as he was not aware of his current medical status.
Key findings
The key findings covered five domains.
Questions asked during out-patient appointments
Four main questions were discussed during out-patient consultations: test results, symptoms and their management, medication and requests for information about liver disease (Table 2). Patients wanted to know a range of information about their liver disease, ranging from the extent of disease progression and prognosis, treatment availability, advice on how to improve liver function or general health.
Other issues included questions about diet, the availability of psychological support, the impact of the disease on patients and their family members, maintaining the patient at home and practical issues relating to driving, and financial and social support. Patients on the transplant list (and their close family members) also wanted to know about their position on the transplant list, the practicalities of waiting for a transplant and technical questions about donor back-ups and the transplant procedure.
Topics not covered during the outpatient consultation
Most patients and family members did not feel restricted about asking health professionals questions, but both patients and health professionals felt that certain topics were not covered (Table 2). Some wanted better information about their prognosis, or what would happen if their liver disease deteriorated. Others were unclear about the potential effects of medication on their symptoms. Patients and family members wanted more information about other available treatments or foods they could eat. Some clinicians felt that patients should ask more questions about their future, particularly about advance care plans and the need to write a will. For patients on the transplant waiting list, clinicians felt that patients should ask questions about their expectations about the benefits and burdens of transplantation.
Barriers to asking questions
Six themes were identified as barriers to asking questions: limited time available during out-patient appointments; expectations about topics to discuss; fears about negative information; memory issues affecting patients as a result of their liver disease; doctors only discussing test results; and the stigma associated with liver disease. The limited time allocated to each out-patient consultation (approximately 15 minutes) was seen by both patients and health professionals as a key barrier to determining which questions were asked. Some were conscious of using up clinicians’ time unnecessarily and trusted that clinicians would tell them about issues that they were most concerned with, as highlighted by this patient.
“I like to hear the doctor’s view on things [her liver disease]. If you ask too many questions, you are not necessarily getting information that you haven’t thought about and it takes up too much time (from the consultation).” (3101, female, Idiopathic cirrhosis).
Most clinicians saw the focus of the outpatient appointment as the management of the patient’s health condition. The limited time available provided some consultants with a rationale to limit their discussion to medical issues and not to other issues such as the patient’s prognosis, which they might find difficult to answer in a 15 minute consultation.
Most of the consultation is about ‘what is – I’ve got ascites, I have aches and pain, I’ve not been able to eat, rather than battling with the real questions ‘where next, where is this all going?’ But if they ask this, a consultation of 10-15 minutes becomes 45 minutes. It’s having time and resources to deal with it adequately, so you don’t encourage the patient to ask, because you have no solution to offer without a multi-disciplinary team.” (Doctor – consultant 2)
Most doctors were only able to offer short consultations, but some professionals such as the Clinical Nurse Specialist working in the transplant team, were able to offer more time, which provided opportunities to discuss concerns that patients felt unable to raise with the doctor. Even so, the key purpose of these consultations was also quite focused (to reduce relapse of substance misuse by reducing anxiety in vulnerable patients on the waiting list) and thus patients’ broader concerns may still go unanswered.
It’s not about answering questions, it’s about listening and containing anxiety. It’s a big part of the role especially when they come up to me and the doctor has a specific remit and needs X information to make a decision if someone is transplantable. The medical sessions are more directive than mine. People feel less interrogated because I have more time. For a new assessment, we allow an hour compared to 15 minutes the docs have. We have the luxury of being able to do a comprehensive history (Clinical Nurse Specialist - transplant).
Many patients had identified memory issues as a barrier to asking questions. Some specifically referred to episodes of hepatic encephalopathy making it difficult to ask questions. Others simply referred to their condition affecting their memory making it difficult to remember information.
For some patients, there was a perceived stigma associated with cirrhosis that made it difficult for them to ask questions. However, others reported that the continuity afforded by seeing the same clinician with the appropriate clinical expertise at each appointment enabled them to be more comfortable about asking questions.
“I see the [liver] consultant regularly as the liver is the main issue. When you go to the GP to get your results, you never see the same person, because you have to explain your results and yes ‘I’m an alcoholic’. Likewise, when I get the same doctor, it’s much nicer, you don’t have to go through [the whole story] and feel as bad.” (3104, female, alcohol related liver disease)
Improving the delivery of information
Patients found it difficult to understand the information given by clinicians concerning their disease as it was often couched in technical medical terms.
“The problem for me has always been deciphering the results I am given, because if you don’t understand it you can almost turn a blind eye to it, it doesn’t seem important because you can’t understand how important it is, because you don’t know” (3109, male, Alcohol related liver disease).
Patients particularly found the use of statistics unhelpful in describing their disease or its prognosis.
Yes he gives me high level statistics! If you make it through the year, you have a 75% of making through the next 10 years. So that response is not helpful. I want practical help about what to expect, not just stats and percentages, and how many people live through what time. Obvious caveat being that if I remain abstinent, realistically if I don’t drink, how am I going to feel in a year’s time? (3103, male, alcohol related liver disease).
Some patients felt that the emphasis on the physical aspect of their care left little time to discuss the psychological impact of their disease, as highlighted by this patient.
“A lot of people with liver disease have got there because of alcohol and that insinuates that there are mental health issues involved. The doctor is very focused on the physical side and not the mental side. My criticism of all liver doctors is they tell you, ‘just don’t drink’ as if it’s easy but it’s a lot more complicated” (3103, male, alcohol related liver disease).
Instead they preferred explanations about their condition, symptoms and management of their disease to be given in simple language, with particular emphasis on what symptoms to look out for and their significance.
Many patients felt that communication could be improved by providing information sheets, particularly about signs and symptoms of liver disease and potential deterioration as a result of liver disease. One patient found that there was too much information to take in during the clinic, so would have liked to pick up the relevant information sheet about the issues discussed during clinic, to take this information sheet away and digest it in more detail at his own pace.
I like to read about it (the information discussed in the consultation) and pick them (leaflets/booklets) up. You can get to it (access) any time you want (3105, male, non-alcohol fatty liver disease).
Other specific suggestions for improving communication included sending patients copies of their test results, providing a contact point with the clinician for patients to get further explanation or advice about their liver disease and getting health professionals to check that patients have understood the information given.