16% of patients receiving haemodialysis have potassium levels outside of the recommended range (Renal Registry 2016). Hyperkalaemia is life threatening and can lead to emergency admissions. Dietary control of potassium is important for patients who have a tendency to run high potassium levels. Fruits and vegetables are a common source of potassium. The types of fruits and vegetables eaten by patients can vary depending on ethnic background.
As suggested in QS167 it is important that any dietary information provided is tailored to the patient and that the patients also have some input into the care and advice given.
Example
Aims and objectives
Our aim is to develop low potassium dietary guidance specific to 4 different ethnic groups. This is important as foods vary between each ethnic group and it is important that the information we provide is succinct and relevant to the individual.
This fits in with NICE Quality Standard 167.
The offer of dietary advice appropriate to the severity of chronic kidney disease in the patient is recommended in NICE guidance 203.
Reasons for implementing your project
Previously dietary resources used in the UK for potassium restriction involved the use of the UK Composition of Foods book. This had foods typical to the UK that you would find in a standard British supermarket. The potassium content of many ethnic foods which may be bought by patients are not found in the UK food composition tables for example pumpkin leaves, cocoyam leaves, drumstick leaves which are commonly consumed in West Africa.
We carried out a questionnaire amongst 60 patients in 3 London units from BME groups and 85% felt ethnic specific low potassium dietary information is needed. In order to develop the resources efficiently, a group of 6 renal dietitians developed a working party to formulate low potassium diet resource for African-Caribbean, Eastern European, Far Eastern and South Asian communities. Each BME diet resource had 1-2 dietitians directly working on finding out the composition of the ethnic specific foods for all food groups. If some foods were common to all of the BME diets e.g. potato, onion, tea, coffee, then the composition data was shared between all groups to save time.
The aim was to produce these dietary resources so they can be shared with renal dietitians throughout the UK (approx 400 renal dietitians). In 2013, approx 27348 patients were on dialysis (renal registry 2014), of which the majority of this group will need access to low potassium dietary resources at some point during their dialysis vintage. In London approx 50% of those on dialysis are from BME groups. This is approximately 5000 BME patients on dialysis within the London area. Low potassium advice may also be required by patients who are not yet on dialysis, so the number requiring guidance on a low potassium diet will be higher.
How did you implement the project
We approached patients directly whilst on dialysis as those who are from BME groups may not attend existing patient forums. Between 4 dialysis units across London, we were able to find a range of patients from BME groups who were happy to advise on which foods needed to be included and how easy to understand the diet resources were. The patients were approached by the dietitians from their renal unit so they had already built a rapport and felt comfortable to share their thoughts.
Prior to approaching the patients in our dialysis units, we tried a more formal approach and approached Kidney Care UK to see if they have patient advocates from BME groups. Their patient advocates were all of European origin which is why we then approached patients who were dialysing in our dialysis units.
Key findings
We met our aims and objectives of developing dietary resources with a wide range of culturally specific foods.
For this project, we accessed food composition tables (for potassium) from a range of countries/areas e.g. West African, Caribbean, Indian, Malaysian, Eastern European. These composition tables are unlikely to have been used in the production of the previously existing low potassium diet sheets. This ensured that we had a more comprehensive range of foods.
When we showed patients the new resources, 72% of patients felt they learnt something new about the low potassium diet having read the diet sheets.
By working as a group of 6 dietitians, we were able to produce 4 very comprehensive diet sheets which can be used nationally. This saves each renal unit in the UK producing their own. Data for the foods that are common to all 4 diet resources were shared within our team, to save looking up a large amount of data each. We are just getting the resources typeset professionally to be shared nationally (as we have currently only used them in the 6 hospitals the dietitians are from). These diet resources will then be available on the British Dietetic Association website. We have seeked funding for it to be translated. We are currently liaising with the European Dialysis and Transplant Nurses Association to see if they can support in the translation of the Eastern European diet resource. For the other diet resources, we will get external translators to translate.
For patients, having a diet resource that contains food they are familiar with will mean they can continue to enjoy the food they are accustomed to whilst they are undergoing the upheaval and stresses of having chronic kidney disease/being on dialysis. Being aware of the foods high in potassium should lead to a reduced risk of hyperkalaemia and admissions in relation to this.
For staff, having written information to give to patients with these ethnic specific foods means that each member of staff has access to an evidence based diet resource. Commonly dietary advice can come from many members of the MDT and sometimes the information provided is not consistent. By having written information that is evidence based and that can be used nationally, this should reduce the risk of conflicting advice being provided.
Key learning points
Whilst we were working on the diet resources for the patients it became apparent how much knowledge the group of 6 dietitians had about the ethnic specific foods. Some of the dietitians were from the same BME group they were producing the resource for whilst other dietitians had an enthusiasm and knowledge due to working with patients from specific BME groups. It became apparent whilst sharing the knowledge with each other (in the group) during the production of these diet sheets that we had a lot of knowledge that we already knew or learnt whilst producing these diet sheets. For this reason we have started to formulate a dietitians handbook regarding each ethnic group to explain what the foods are and to provide pictures for the dietitian in case a patient is struggling to name the food in English. The dietitians handbook also provides a rationale/evidence base to the information in the patients diet resource.
If a similar project was being considered, I would suggest getting together with dietitians from other hospitals as we did, to get a broad understanding of the current level of dietary provision nationally and to get an understanding of different ways of working. As a group, the project can then utilise the best aspects from each unit.
Ideally it is best to involve patients as early on in the project as possible. Be aware that existing patient forums may not always contain a broad demographic representative of the UK, so sometimes you may need to approach patients specifically in order to get a wider representation that is appropriate to your project.
Publicise your hard work by submitting to conferences or to your professional associations so others are aware of the possibilities and can use the resources you have produced.