ImpRoving Reporting of ITch using AcceleRomeTErs (IRRITATE) in Kidney Patients

Data Source

– Published literature

– Transcripts of audio-recorded interviews with kidney patients and healthcare professionals

– Accelerometer and questionnaire data from 45 kidney patients who suffer from itch

Funding

The research is funded by Kidney Research UK (grant reference IN_013_20160304)

Methodology

STAGE 1

We have interviewed 25 people with kidney disease who have personal experience of itch, as well as 22 doctors and nurses who treat them in Central Manchester Foundation Trust, University Hospitals Leicester NHS Foundation Trust and Samuel Johnson Community Hospital in Lichfield. The purpose of the interviews was to identify why itch was not being discussed during clinic consultations.

Additionally, we looked at other studies that used data from accelerometers to assess sleep and scratching in people with itch.

STAGE 2

NOW recruiting: see below for details

In Stage 2, we will ask people with kidney disease to wear an accelerometer at home for a week to automatically collect data on their sleep and itch. We will invite both people with and without itch, so that we can investigate whether the data looks different between these groups.

In addition to wearing the accelerometer, we will ask people to keep track of their sleep and itch in daily logs and complete an online questionnaire at the end of the data collection week. The log and questionnaire data will allow us to compare the ‘objective’ sleep and itch data from the accelerometer to the ‘subjective’ data reported by patients.

A third questionnaire will ask patients whether they found it acceptable and feasible to collect accelerometer data at home as a way of assessing their sleep and itch.

Benefits and results

STAGE 1

From analysing the interview transcripts, we have identified potential reasons for why itch is not being discussed during clinical consultations. These reasons included: patients were not aware that itch was linked to their kidney disease; patients accepted itch as something they had to live with; and the length and timing of consultations led patients to prioritise talking about other health issues. We also found that health care professionals used lots of different strategies to assess and manage itch that were not always based on scientific evidence.

For the literature review, we found 28 articles that were mostly undertaken in people with an itchy skin disease, e.g. dermatitis or eczema. From those articles, we concluded that data from accelerometers can indeed provide accurate, objective information on people’s nocturnal (scratching) activity and sleep, but that this does not necessarily reflect people’s experience of itch. This means that accelerometry-based methods can only complement –but not replace– patients’ self-reported itch assessments.

STAGE 2

We are now recruiting for this part of the research (see details below). We expect the results to improve our understanding of how accelerometers can support symptom reporting for people with kidney disease.

Hopes for the future

Once we know how we could use accelerometers to assess how badly people with kidney disease are itching and how it disturbs their sleep, we hope it will be easier for kidney patients and their doctors to recognise itch as a problem, and help them decide how to treat it.

Publications and other outputs

Van der Veer SN, Aresi G, Gair R. Incorporating patient-reported symptom assessments into routine care for people with chronic kidney disease. Clin Kidney J. 2017;10:783–7

Aresi G, Rayner HC, Hassan L, Burton JO, Mitra S, Sanders C, et al. Reasons for underreporting of uraemic pruritus in people with chronic kidney disease: A qualitative study. J Pain Symptom Manage. Elsevier Inc; 2019;58:578–86.

The project also featured on page 13 of the 2016 Autumn issue of Update, the magazine of Kidney Research UK.

Researchers Involved

Chief Investigator: Sabine Van der veer