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Distress in elderly renal patients

Lead Applicant: Dr David Wheeler (UCL Internal Medicine, Centre for Nephrology)

Main Collaborator: Dr Joesph Low (UCL Mental Health Sciences Unit)

Additional Collaborators:

Dr Helen Alston (geriatric nephrology phD student)


Background

Elderly patients with advanced Chronic Kidney disease (CKD) and multiple co-morbidities have been shown to have high symptom and depression scores in cross-sectional studies.

However, little is known about trajectory over time and the effect of interventions such as dialysis. Dr Wheeler and Dr Alston are studying the use of the distress thermometer (DT), a simple self-scoring visual analogue scale widely used in cancer settings, in advanced CKD patients around the start of dialysis.

We plan to collaborate with Dr Low, a noted palliative care researcher, to carry out semi-structured qualitative interviews both in patients with CKD and on dialysis, about their experiences of distress. This will guide future research.

Hypothesis

Factors which influence distress levels in elderly CKD patients are unknown and can be elucidated using semi-structured in-depth interviews.

Ethical Issues

Fully informed written consent will be obtained in line with GCP recommendations, including permission to audio-record interviews. The interviewer will be appropriately trained, and will be sensitive to participants’ needs. Participants will be offered appropriate psychosocial support if needed.

Recruitment

We will recruit LCC patients who express a preference for each treatment modality (HD, PD and CM) and are likely to progress to RRT or cross the putative dialysis threshold (eGFR 8.6ml/min) in the study period. Suitable patients will be purposively selected to represent our elderly LCC population (age, sex, ethnicity, social, functional and carer status) and approached directly by the LCC team on an expectant basis. Additionally, the sample population will be enriched by including patients with particularly high and low DT scores.

Sample size

A total of 16 interviews will be conducted. We anticipate, based on previous studies, that six participants from each modality will be sufficient to ensure a saturation of themes and to cover the varied experiences during a typical LCC/RRT “journey”. If however new themes are still emerging we will recruit more patients. Medical interpreters will be used if required.

Interviews

We will conduct and record semi-structured interviews in a place of the patient’s choice clinical setting or home (subject to risk assessment), using the structure outlined below. Each interview will last 30-60 minutes, or longer if the participant has further issues to discuss and is keen to proceed.

1. What do you understand by “distress”?

2. What makes you feel distressed?

3. Describe some occasions when you felt distressed.

4. Does anything about your kidney disease distress you?

5. When you feel distressed, what do you do about it? How do you cope?

6. Do we do anything in kidney clinic to make you feel better? Do we do anything that makes it worse?

7. Could we do more to help you feel less distressed?

8. Could anyone else do anything to relieve your distress?

9. If you do not suffer much distress, why do you think that is?

Analysis of interviews

Each interview will be transcribed verbatim. The transcript will be transferred onto NVivo9, a software programme for analysis of qualitative data, and analysed using thematic content analysis.

We will identify key themes in the transcript and count the frequency of these themes in the text. We will undertake a thematic analysis of the transcripts to explore patients’ understanding and experience of “distress” and factors contributing to it. Texts will be re-read in their entirety to confirm key themes and place individual accounts in the context of information about each participant.

To ensure validity and reliability, theme generation will be carried out independently by HA and JL, who will then meet to confirm themes identified.

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