Patient reported Haemoglobin levels and anaemia: Results of a National Kidney Federation Survey compared with European Best Practice guidelines

T Statham OBE¹, P McEwan², M Walker³

¹National Kidney Federation, ²Cardiff University, ³Roche Products limited

Introduction: In end stage renal disease (ESRD), treatment with erythropoietin (EPO) should be considered when haemoglobin (Hb) levels are consistently lower than 11g/dL and all other causes of anaemia have been ruled out. The objective of this study was to quantify patient understanding of anaemia and ascertain if European Best Practice Guidelines (EBPG) for the management of anaemia in ESRD were consistent with patient reported experience.

Methods: A postal survey was sent along with every copy of Kidney Life (National Kidney Federation quarterly magazine) to a circulation list of 19,000, which included patients who were either preparing for dialysis, on dialysis, or who had been transplanted. The survey asked questions related to anaemia status, EPO treatment, haemoglobin levels, and quality of life.

Results: Data were available from 2106 respondents of whom 91 (4.3%) were preparing for dialysis, 783 (37.2%) were on dialysis, 1020 (48.4%) had been transplanted and 198 (9.4%) were on dialysis following transplant failure. Anaemia was reported in 1280 (60.8%) respondents, of which 1140 (89.1%) received EPO. Overall, 1,631 (77.4%) of survey respondents reported receiving EPO, and of these, 699 (42.9%) did not know their Hb levels and 620 (38.0%) were unaware of what their target Hb levels should be. Of the 924 respondents who reported their Hb levels, 825 (89.3%) were below 9.9g/dL and 637 (68.9%) were below 9g/dL at the start of EPO treatment. Only 38 patients (4.1%) had Hb levels greater than or equal to 11g/dL before starting EPO and this increased to 861 (93.4 %) following treatment.

Conclusion: This survey demonstrates that EPO is typically initiated when patient reported Hb levels are well below the EBPG target. Of those patients reporting their Hb levels, more than 85% of patients achieved the EBPG target of 11g/dL or more following EPO therapy. However, this sample represents just over half of patients who reported receiving EPO and it is not known from the survey results whether the remaining patients achieved EBPG target haemoglobin levels. While the majority of patients with renal anaemia receive EPO, awareness of haemoglobin levels and anaemia in ESRD should be improved. An increased level of awareness may help patients to better understand the symptoms of anaemia and its treatment.