The unmet needs of people with glomerular diseases: the perspective of a lead research nurse
Justyna Szklarzewicz is a lead research nurse at University Hospitals of Leicester NHS Trust in the UK. Her role involves coordinating clinical trials and other research studies for kidney patients, supporting clinicians in delivering this work. Here she gives her insights into the unmet needs of patients with glomerular diseases
Justyna says that the first challenge for patients with glomerular diseases, such as IgA nephropathy (IgAN) and focal segmental glomerulosclerosis (FSGS), is getting a prompt diagnosis: “Patients are sometimes referred too late… It’s important for us to work collaboratively with GPs, so that they have more awareness about renal conditions. Timely diagnosis is key: faster diagnosis will lead to a better prognosis.”
The next challenge for patients is understanding what the diagnosis means for them. Typically, when a person is diagnosed with chronic kidney disease (CKD), they are given the diagnosis and prognosis in an appointment that may last just 10 or 15 minutes, Justyna explains. At such a difficult time in their lives and with so many unanswered questions running through their minds, it is perhaps no wonder that patients will often immediately rush off to research their condition on the internet. Unfortunately, this can cause more problems than it solves.
“A patient might come in with perfectly fine kidney function but with some proteinuria [presence of proteins in the urine], and they will probably live many years without needing dialysis or transplantation. But when they go onto the internet, they think, oh, I can’t eat this, I can’t eat that, I shouldn’t do this. They try to adjust their lives at the very beginning of their journey.
“They come back into the clinic, fearful and anxious, saying, ‘my proteinuria is high—I’ll probably end up on dialysis in the next few years’. And that’s why we need to look at the patient’s place in the stages of kidney disease; they should have the information for their stage.”
“I think the information presented at the time of diagnosis should be delivered in a way that the patient understands.”
“Terms need to be explained to patients—maybe in a glossary of terms leaflet— because if you’re not from a medical background, you wouldn’t understand half of the information on the lab report.” This is true of letters sent by clinicians too, Justyna says. “Of course, they need to be professional, but at the same time the patient should be able to understand them.”
Another major concern for patients is how they should adapt their lifestyle in terms of diet and exercise. “It all depends on what is on the lab report. At the beginning, we will mention reducing salt and sugar and leading a healthy lifestyle with moderate exercise, but what if they are actually at a later stage of kidney disease?
“We have leaflets, but for more specific help, they will need to have access to renal dietitians,” Justyna says. Getting a referral to a dietitian for tailored advice about potassium and sodium intakes can be a lengthy process and, in the meantime, patients tend to go online looking for information. That gives them an enormous amount of unfiltered information—“everything and nothing” as Justyna describes it.
Patients will be told to have a balanced diet, but “not all people understand what ‘balanced diet’ means”, Justyna says. People from different backgrounds and cultures have different understandings, she adds.
“It’s good to teach people right from scratch. It’s about going back to the real basics: you should have this amount of protein, this amount of fibre, this amount of salt, carbohydrates… Patients are mostly willing to do this, because end-stage renal failure and requiring dialysis or transplantation is what they fear the most.”
Justyna hopes that in the future it will be possible for people to use an online tool to obtain advice that is tailored to their condition, age and stage of their disease. “I think that will make patients’ lives with these conditions so much easier. We all try to do our best, but we have limited time when we see people.”
The treatments used in different kidney diseases may cause side effects for patients, short- and long-term, or impact them in various other ways, including their quality of life, Justyna says.
For instance, a short-term burden arises when patients have to stay in hospital for an intravenous drip or for a repeat biopsy. This may have financial implications for them, too.
In the longer-term, patients may experience persistent side-effects from their medication. For example, “a tablet for lowering blood pressure, which we use to lower proteinuria, may cause a persistent dry cough”, she says. In such cases, a change of treatment approach may be required.
Justyna says that patients are sometimes curious about treatments given to other patients and ask why they are not also receiving them, not realising the treatment may not be suitable for them.
Justyna has observed how people with CKD often have concerns about their finances, mental health, family planning and pregnancy, and travel. She feels that there should be a compendium of useful information that healthcare professionals can direct patients to for these issues.
For example, she says: “Sometimes people feel too unwell to go to work, and we should be able to direct them to professional support when employers are not paying sick leave, and things like that.” The cost of multiple prescriptions may also be a burden, so signposting to the help that is available is also useful.
Patients with IgAN and FSGS tell Justyna that obtaining travel insurance can be difficult, restricting their opportunity to travel and reducing their quality of life.
“Patients also mention a lack of psychological and emotional support. We will make referrals, but it takes time to get access to professional help. Sometimes a simple conversation with a health care professional or with a person with the same condition will be enough while they’re waiting for an appointment.”
Fortunately, for people with IgAN there are now opportunities for this to happen, online through social media and in person through the IgAN patient information days.
Justyna says that the IgA Nephropathy Support UK Facebook group is an excellent resource for patients to find out more about living with their condition. This was set up in 2015 by a patient with IgAN who was upset by the lack of online information that reflected the experience of UK patients.
“We see this a lot in glomerular diseases. Patients see things online and they come back and say ‘Oh, I’ve seen a patient online who was treated this way. Why don’t we have this approach in Leicester?’”
Justyna says that the Facebook group, which has nearly 2,000 members, gives patients the opportunity to discuss treatment differences between and within countries and find out the reasons for them, and much more besides. It gives valuable support not only to people with IgAN but also to their families, she says.
The topics that patients and caregivers discuss on Facebook gives the research team at Leicester a vital insight into patients’ concerns and questions, some of which do not come across when patients are talking with their medical teams. Professor Jonathan Barratt and Dr Chee Kay Cheung responded to the top 10 such questions in a recent “ask the experts” web session.
The team maintains constant interaction with patients through the Facebook site. “We don’t give them medical advice because that’s not the place to do it, but we see what actually bothers patients the most.” Sometimes, if it has been approved by the ethics committee, the team can share information about glomerular disease research projects, too. This is really helpful, because the rarity of these conditions means that the potential pool of participants in trials is very small.
The Facebook group also gives the team the chance to promote the annual IgA nephropathy patient information days, which Justyna helps to organise. Recordings from these can be found on YouTube, along with many other patient-friendly resources.
The information days play a vital role in “bringing people together, so that they don’t feel left out”, Justyna says. They help people with IgAN to understand more about how the disease may affect them as time goes on and, crucially, that they are not alone with a rare disease: “Patients definitely want to meet people with the same condition.”
As a key part of the research team at Leicester, Justyna really values the interactions she has with patients and the insights that these bring. She also has the satisfaction of knowing that the team’s work is helping to influence outcomes for people with glomerular diseases today—and for people who will be diagnosed in the future.
“In certain areas of nursing, such as end of life care, you see the outcome, but it is not the outcome you desire. If you can change something and see the outcome, that’s really worthwhile. It’s really challenging, rewarding, full of opportunities and gives you hope for the future.”
Date of preparation October 2022 – UK-NA-2200158
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