In our continuing video series from the ERA-EDTA 2014 Congress, Viatcheslav Rakov from Vifor Pharma explains how an ethnographic study of dialysis patients identified three different patient groups, based on their ability and willingness to manage their own condition:
- Afflicted patients, who typically consider themselves depressed, are limited in their everyday activities and are very dependent on their disease. This group is the biggest population of patients on dialysis.
- Family-oriented patients, who are heavily supported by the families.
- Proactive patients, who are fighting their disease, trying to control it and doing everything they can to support nephrologists and other clinic personnel to keep their disease under control.
These groups were linked to different levels medication compliance, suggesting that patient education programs could be adjusted to suit each type in order to improve medication adherence.
Good afternoon. My name is Viatcheslav Rakov, and I am a Medical Director at Vifor Pharma working in Global Medical Affairs.
We know that adherence is a big problem in patients on dialysis, and we wanted to understand, better & more in-depth, what are the reasons for being non-adherent. For this purpose, we conducted ethnographic research. This a qualitative approach, and we went to patients’ homes and spent at least six hours with them observing their everyday life and asking them some questions in relation to their disease.
We included 30 patients in five European countries in this study, and what we realized was that most of the patients are very affected by their disease. They feel themselves depressed, they are limited in their everyday activities, and they are very dependent on their disease. We call these patients “afflicted”, and this is the biggest population in patients on dialysis. We also realized that there were two other groups of patients. We called them “family-oriented” patients who are very much supported by the families, and in these patients, as one can imagine, adherence is better. And patients who we call “proactive patients”, who are really fighting their disease, patients who are trying to control their disease and doing everything to support nephrologists and other personnel in the clinic to keep their disease under control.
Concerning these results, we think that it is very important to focus on patients who can be considered as afflicted patients and to help these patients be adherent & to better control the disease. And looking at, also based on the study results, which type of information or which source of information that patient used, we realized that of course the most trustworthy source of information is the nephrologist. However, he or she is not always reachable for patients, and patients don’t see these physicians very often. Therefore, in their routine, daily life, they often go to nurses, dietitians, or other clinic personnel to get answers to their questions. Also, the internet plays an important role as an information source in patients, and even in afflicted patients.
We consider that these study results can be used to adjust future activities in educating patients on dialysis. Thank you.
Insights into dialysis patients’ lives offer a new perspective for improving compliance with phosphate binder therapy: learnings from an ethnographic study. Abstract SP269, ERA-EDTA Congress 2014. Frank Schiepe, Yasmine Draz, Viatcheslav Rakov
See also the previous ERA-EDTA articles:
May 28th, 2014; ERA-EDTA (Part 1) – Preview of ERA-EDTA 2014