UK survey of patient and caregiver perspectives on the impact of chronic kidney disease-associated anaemia

Discussion

This report identified that individuals living with CKD have a high burden of intrusive symptoms, many of which align with CKD-associated anaemia, with a substantial impact on daily life. There is a potential disconnect between patient understanding and clinical management plans implemented by HCPs. Over half of the participant cohort had received ESA therapy with a substantial positive impact on both symptoms and daily living. Participants expressed a preference for both oral and injectable anaemia treatments.

Most of the study cohort had received at least one treatment for CKD-associated anaemia. Of the participants who had received treatment, over half had experience with intravenous iron, just under one-third had taken iron tablets and over half had received ESA therapy. The participants were positive about their ESA therapy experience; people felt better after receiving ESA therapy, with improvements in physical activity and exercise, activities of daily living and involvement in social activities. Effective management of CKD-associated anaemia incorporating ESA therapy has been shown to improve physical function and energy levels.17 However, for participants receiving injectable ESA therapy, doses have been missed, delayed and discarded, impacting overall adherence. Half of the participants who self-administered ESA therapy at home stated they had received formal training, and nearly one-third of them expressed they felt somewhat uncomfortable administering the treatment. In small studies of compliance to ESA therapy within the peritoneal dialysis population, non-compliance was common due to forgetting to administer, pain from injections and challenges in receiving medication.18 Compliance issues have been associated with ESA therapy administration by someone other than the patient.19 Similar challenges have been reported in non-CKD populations; barriers to implementing injectable ESA therapy in people living with sickle-cell disease include adherence, tolerability of injections and inability to self-inject.12

Despite most of the study cohort receiving treatment for anaemia, around a quarter reported they had not experienced anaemia and a third had not received information about anaemia. This reflects a potential disconnect between HCP and patient communications. For those who had received information, HCPs and patient websites were reported as helpful sources. These findings are corroborated by similar cross-sectional survey studies within the CKD population. Grandy et al completed an online survey of >400 people living with CKD in the USA, with and without anaemia: two-thirds of the cohort were aware of an association between CKD and anaemia; half of those with anaemia were informed about treatment options by their HCP, with iron supplementation most commonly discussed; and HCPs were the most trusted source of information but over a third of patients wanted to receive more.20 Hao et al completed an online survey of 500 people living with CKD in China, with and without anaemia: most participants with a diagnosis of anaemia were aware of the association with CKD but less than half were aware of their haemoglobin levels; most patients with anaemia valued HCPs above other sources of information yet just over half of those with anaemia had received information proactively from their doctor; and dietary advice and iron supplementation were the most frequently discussed treatments.21

In this study cohort, there was a similar proportion of participants reporting a preference for injectable ESA therapy as there was reporting a preference for oral therapies for anaemia treatment. However, on review of how these individuals received their ESA therapy, there was a higher proportion of participants who received their injections from an HCP that preferred injectable ESA therapy compared with those who self-administered/received it from a member of their household. Findings from other studies involving predialysis and peritoneal dialysis cohorts suggest the option of avoiding regular self-administered injections appears to be a driver for preference toward oral therapies. Alexandre et al found patients are willing to accept an increase in gastrointestinal side effects to receive oral anaemia treatment over at-home subcutaneous therapy,22 and peritoneal dialysis patients preferred oral treatments to avoid self-administration and reduce storage requirements and travel.23 In contrast, haemodialysis patients receiving intravenous ESA therapy during dialysis did not share a preference for oral treatment due to a lack of perceived convenience.23 Lu et al found patients reported inconvenience of injectable ESA therapy storage and self-administration, whereas an oral therapy is convenient and familiar in comparison.24 Thus, individuals’ CKD stage, associated treatments and personal circumstances (eg, home access to HCP support) influence treatment preferences and should be considered when making patient-centred decisions.

There are several limitations requiring careful consideration when interpreting these study findings. This is a cross-sectional study of a small number of people self-reporting their CKD diagnosis, with some specific questions receiving only a small number of responses, and no link to clinical records and objective diagnoses. The survey was designed with a focus on the experience of anaemia, ESA therapies and alternative routes of administration, with open-ended questions within these defined topics. Participation relied on access to and use of the internet, engagement with the NKF, with an associated £15 incentive for participation. Consequently, although the findings do align with the literature, they are not representative of the UK CKD population and are at risk of significant bias. In circumstances whereby the survey was completed by a caregiver on behalf of the individual living with kidney disease, demographic characteristics, their relationship with the individual (eg, partner, adult child), and whether the need for care was a direct consequence of kidney disease and/or comorbidity were not collected. Although the survey demonstrates a potential disconnect between patient understanding and clinical management plans implemented by HCPs, the HCP–patient relationship with regard to the decision-making process for the management of CKD-associated anaemia has not been explored.

Despite the limitations, the findings from this study could improve clinical practice by prompting HCPs to discuss CKD-associated anaemia with their patients and consider individual patient situations when counselling on management options, especially with the introduction of oral HIF-PH enzyme inhibitors.25 Further work is needed to: understand the patient experience of CKD-anaemia from a representative CKD population with utilisation of CKD-specific patient-centred outcomes26; explore the HCP experience of CKD-anaemia management and rationales for treatment preferences to aid our understanding of the decision-making process between HCPs and patients; and develop strategies to help HCPs, patients and their carers increase knowledge and promote patient-centred shared decision-making within the time constraints and pressures of the clinical service.