Having multiple conditions – called multimorbidity by doctors – is more common in people with CKD than in people with any other long-term condition.
Implications of multimorbidity
According to Dr Mike Sullivan: “Almost everyone with CKD – about 9 in 10 people – has other long-term conditions and this has important implications. As the number of conditions increases, a person’s health becomes more complicated and complex to manage.
“For example, if you have multiple conditions and become unwell, you are more likely to need to be admitted to hospital than if you just have CKD.”
Mike is Specialist Registrar at the Glasgow Renal and Transplant Unit, Queen Elizabeth University Hospital, and Clinical Research Fellow at the University of Glasgow. He has a special interest in studying people with kidney disease and multiple other health problems.
Mike says: “Many of the people that I look after in kidney clinics and dialysis units know all about their conditions and their treatments, but some do not. Some people do not want to know; they are happy not to know too much about their health.
“But I think that if people do want to know, they can talk to their kidney doctor or nurse, so that they understand their conditions and their treatment. This might help them understand why they have the symptoms they do, and this could help them manage their symptoms.
"This is especially important for people who are taking multiple medications. We know that some people do not always take their medications, especially for conditions like high blood pressure that often do not cause symptoms.
“Understanding more about your long-term conditions may make you more likely to take your medications. This could improve how effectively the conditions are managed. So, I encourage people to be interested and find out more about the conditions they have,” he adds.
Long-term conditions in people with CKD in order of frequency
- Hypertension (high blood pressure)
- Chronic (long-term) pain
- Heart failure
- Heart attacks/angina
- Lung disease (including asthma)
- Cerebrovascular disease (stroke or transient ischaemic attack)
- Atrial fibrillation (irregular heart rhythm)
"About 9 in 10 people with CKD have other long-term conditions"Dr Mike Sullivan
Managing multiple conditions: the treatment burden
Taking multiple medications – known as polypharmacy– is very common among people with CKD. It is an important contributor to treatment burden, which is different from the symptoms that someone experiences.
Treatment burden is all the work that people and their carers must do to maintain their health and wellbeing, but it is not always acknowledged by healthcare professionals.
Mike explains: “Treatment burden is significant, and it becomes greater as people have more conditions. It might include taking tablets, going to the pharmacy to collect these tablets, going to appointments at different hospitals for different conditions.
“It might involve having to arrange transport to get to the appointments or being telephoned while busy with family, friends or work.”
According to Mike, both patients and doctors need to work together to minimise the treatment burden. He explains: “I encourage people with CKD and their clinicians to think what is really possible for patients.
“For example, if someone is being prepared for dialysis, they usually have multiple appointments and other hospital visits, such as being admitted overnight for fistula creation. Appointments with other specialists, such as at the eye clinic or with the diabetes team, are also really important.
“Patients should ask themselves if they can come to all these appointments, instead of not being able to attend because of having too much to manage.“
“Similarly, rather than just assuming that all medications will be taken, and all appointments kept, clinicians should ask themselves if this is really feasible balanced against everything else that is going on in patients’ lives. As clinicians, we can think that we are the only doctors that patients see, but this is not the reality.”
"Treatment burden becomes greater as people have more conditions"Dr Mike Sullivan
Treatment burden is particularly difficult for people who are dialysing in centre, who are already spending three days a week at the dialysis unit. It is a significant burden to have to fit other appointments – with the hospital, GP, podiatrist or dentist – around dialysis. It means a great deal of work, especially if you cannot change appointments online or have limited internet access.
Mike says: “It takes a great deal of time and skill for patients to navigate healthcare systems – it can feel like a full-time job. This treatment burden needs to be acknowledged by people with CKD themselves, but mainly by clinicians who should aim to make life easier for their patients.
“Although it should not be a patient’s responsibility to deal with conflicting appointments, it still happens with the current system. So, if you get a letter giving you a date for an appointment, tell them if you’re not going to be able to attend and ask for the appointment to be changed.”
Chronic pain, depression and anxiety in people living with CKD
While cardiovascular conditions such as high blood pressure, heart disease and heart failure are particularly common among people with kidney disease, Mike and his colleagues’ research has highlighted the high proportion of people with CKD who also have long-term (chronic) pain and mental health problems such depression and anxiety.
"About 2 in 5 people with CKD have chronic pain and about 1 in 5 have depression. Generally, kidney doctors are not as good as we should be at asking about problems to do with mood and pain, and unfortunately treatments for these conditions are not particularly good.
“Too often, as a medical community we focus on how we are going to improve blood pressure control or vascular access. However, CKD patients need us to invest in treatment for symptoms like chronic pain that really bother patients and reduce their quality of life.”
GPs regularly deal with mental health problems, so often have more expertise than hospital doctors in managing problems like depression and anxiety. However, dialysis patients in particular spend so much time in hospital that they are sometimes reluctant to spend any extra time going to see a GP.
“All too often, people with CKD also think that their GP cannot help. But GPs are very skilled and if they are unsure if treatments are compatible with your kidney care, they will contact the kidney team,” adds Mike.
People with CKD are more likely to experience side effects, and the number of their medications means that interactions between drugs are common. So, GPs can be worried about prescribing medicines for people with CKD. If this is the case, Mike advises talking to your kidney doctor.
Research and guidelines
Better recognition by clinicians of symptoms like chronic pain, depression and anxiety in people with CKD is key, but treatments also need to be improved. However, when new medications are being developed, people with kidney disease are frequently not included in the clinical trials. As result, the medication being studied may not work so well in people with CKD.
“Clinical trials sometimes assume that people have just one or two conditions. For example, when a diabetes drug is developed, many of the people in the trials might just have diabetes, or possibly diabetes and high blood pressure.
“But the people kidney doctors treat usually have multiple conditions, so the trials do not always represent our patients well. People with CKD and multiple conditions need to be included in research because it influences clinical guidelines,” says Mike.
Clinical guidelines are recommendations on how to diagnose and treat a medical condition. They are written for doctors, nurses, and other healthcare professionals, and aim to help ensure that patients receive up-to-date and appropriate treatment and care.
Since CKD and other long-term conditions are often viewed in isolation, clinical guidelines do not always take into account that people have multiple health problems. It can therefore be difficult for clinicians to make the right decisions for their patients’ treatment.
According to Mike: “Although knowing about and treating your long-term conditions is important, your all-round wellbeing is key. No matter the conditions you have, keeping your mind and body active in simple ways can make a really big impact on your general health.
“You do not have to do ‘exercise’ or what people would typically think of as exercise. For some people, it might mean walking a bit further by parking at the other side of the supermarket car park; for others it might be doing stretches sitting in a chair.
“When you are prescribed a medication or sent an appointment letter, ask questions and explain if you cannot take the tablets or go to the appointment. It is best to be upfront and honest with clinicians.
“The last thing we want to do is to disrupt people’s lives and for there to be poor communication with our patients. I hope that by asking questions and asking yourself ‘Can I do what is being asked of me?’, you will be empowered as a patient,” he concludes.
This article was first published in Kidney Matters Issue 18.