#837 Information needs and emotional impact when receiving a diagnosis of chronic kidney disease: insights from DISCOVER CKD
Authors: Pecoits-Filho Roberto , Pollock Carol , Carrero Juan-Jesus , Kanda Eiichiro , Ofori-Asenso Richard , Palmer Ewelina , Woodward Helen , Linder Andrew , Pentakota Surendra , Garcia Sanchez Juan , Kashihara Naoki , Fishbane Steven , Lam Carolyn , Wheeler David C 
Published: May 2024

Background and Aims

Chronic kidney disease (CKD) is often a silent condition, with symptoms typically not appearing until a large proportion of kidney function has been lost. Therapeutic interventions, e.g., disease-modifying medications, blood pressure and diabetes control, and lifestyle changes, can delay CKD progression, particularly if instigated early. However, psychological distress can reduce adherence to interventions. It is important patients are adequately informed about their diagnosis to improve adherence and reduce the impact of distress. Multinational, real-world data on patient experiences with CKD, particularly about clinical management, treatment patterns and quality of life, are limited. This DISCOVER CKD sub-study aimed to capture the emotions elicited by patients at CKD diagnosis and their perceptions of the information received.

Method

DISCOVER CKD (NCT04034992) is a multinational cohort study that aims tocharacterise the epidemiology of CKD and describe patient characteristics, CKD progression, clinical outcomes, the patient journey, practice patterns, and clinical management. The current analysis includes a subset of patients from the USA, UK, Japan, and Spain, who participated in 1-2-1 telephone interviews about their CKD experience, including their disease journey and interactions with the healthcare system. Interview topics in DISCOVER CKD were informed by a pilot study that utilised data from PatientsLikeMe, an online network for patients to share personal stories and health data. Qualitative interviews, conducted in the local language by trained interviewers, January–June 2023, lasted ∼60–90 minutes. Transcribed interviews were translated into English for coding (MAXQDA Plus 2022 v22.3.0) and analysis. The study received research ethics board approval and all participants provided written informed consent.

Results

103 patients (mean age 63.1 years; 42.7% female; 51.5% with type 2 diabetes) were interviewed. Most had CKD stage 3A (22.3%) or 3B (28.2%); 26.2% had stage 4 or 5 no dialysis and 9.7% were stage 4 (n = 1) or 5 on dialysis. Average time since diagnosis was 9.5 years. Over one-third (38.8%; n = 40/103) of participants did not recall any specific symptoms or signs of CKD prior to diagnosis. Of the pre-diagnosis symptoms reported, the most common was fatigue (21.4%; n = 22/103), then high blood pressure (15.5%; n = 16/103) and swelling (11.7%; n = 12/103). With respect to patient experiences, 55.2% (n = 32/58) said they did not feel sufficient information about CKD was provided at diagnosis and 59.2% (n = 45/76) said no information about their CKD stage was shared. Participants felt overwhelmed and confused about the diagnostic process and struggled to understand the information provided to them, including information about kidney function and symptoms. To supplement their understanding, participants reported using additional sources of information, including the internet (52.9%; n = 36/68), other healthcare professionals (HCPs) (19.1%; n = 13/68), books/printed information (11.8%; n = 8/68) and patient support groups (8.8%; n = 6/68). The most common emotions experienced at the time of diagnosis were worry and fear (28.2%; n = 29/103), then shock/surprise (25.2%; n = 26/103) (Figure). For those reporting no reaction (27.2%; n = 28/103), many stated the condition had no discernible effect on their daily lives. Reasons for fear or worry were related to the potential for disease progression.

Conclusion

Many patients expressed dissatisfaction with the information they received at their CKD diagnosis. This suggests that HCPs could dedicate more time to explaining the diagnosis, the characteristics and severity of CKD, likelihood of progression, and the benefits of self-management and adherence to intervention. This could be particularly important for those without symptoms at the time of diagnosis, and patients who rely on HCPs as their primary source of information. Patients should be asked what information they want to receive and be directed to trusted sources. The diagnostic process was a highly emotional experience for many patients and counselling or psychological therapy should be considered.