Background There are increasing numbers of patients taking biologic treatment in Rheumatology. When doctors are starting patients on these drugs it is vital that they are counselled regarding the risks and benefits. Counselling is typically initiated by the Rheumatologist, with further information and support provided by specialist nurses. It has been apparent from anecdotal cases that patients can appear to be misinformed and often lack knowledge regarding the important aspects of taking biologic drugs. This could result in potential harm to patients, so we decided to perform a comparison survey.
Objectives To compare the difference between doctors and patients opinions regarding the important aspects of biologic treatments.
Methods A survey was distributed to Consultants and Specialty Training Registrars at the Peninsula Rheumatology regional training day asking them the open question “For any patient who is starting on biologic therapy, what do you think are the most important points to discuss?” Similarly, patients attending the infusion day case ward or routine outpatient clinics across 2 centres were given the survey asking them “What do you think are the most important points to remember whilst on biologic therapy?” For each survey 5 spaces were left for answers. Once the results were obtained they were collated and categorised.
Results 27 patients and 11 doctors completed the surveys giving a total of 94 and 54 comments respectively. From the patients' comments the most common response involved the “infection rules” with 28/94 (30%). Next was “lifestyle factors” including improving diet and exercise with 14/94 (15%) comments. This was followed closely by “monitoring rules” with 13/94 (14%). “Logistical issues” including how to use and store pens accounted for 11/94 (12%). Among the doctors, the most common comment was weighing up the “risks and benefits” with 9/54 (17%). Second was the “logistical issues” of using the drugs with 8/54 (15%). Next “managing expectations” accounted for 7/54 comments (13%). “Infection rules” accounted for 6/54 (11%).
Conclusions These results show that there are similarities between what doctors and patients consider being important, however there are also some stark differences. Notably, doctors appear to value “managing expectations” however this does not appear very high on patients' priorities. Perhaps this is a representation of the current clinical and political environment in the NHS and the higher expectations patients have. Furthermore, the potential risks and benefits of the drug, including side effects was a high priority for doctors but not patients. Patients had a more holistic view with greater attention paid towards improving their diet, exercise, attitudes and general well being. It appears that the awareness of infection risks and the knowledge of “infection rules” are well known to doctors and patients alike. To improve our services it would be helpful to carry out formal re-education or counselling sessions to ensure the risk to patients' health is mitigated. Doctors should be reminded of the holistic nature of the care they should provide.
Disclosure of Interest None declared