New research highlights the impact of current and past medical interactions – especially adverse experiences – on medication adherence amongst lupus patients and indicates the clinician behaviours that help.
People with incurable systemic auto-immune conditions, including lupus, often need lifelong medications to slow or stop the progression of the disease. Despite the fact that the medications are critically important to their health, patients don’t always take those medications as prescribed. The research team describe the responsive and caring clinician behaviours that patients said encouraged them to stick to prescribed medication and to tell their clinicians if they don’t take the medications.
The study was led by Melanie Sloan, researcher at the Primary Care Unit, University of Cambridge, with a research team that included rheumatologists, behavioural scientists and patients. The senior author was eminent lupus specialist Professor D’Cruz from The Louise Cootes Lupus Unit at St Thomas’ Hospital.
The researchers combined data from an online survey, with 186 responses from lupus patients, and insights from 23 in-depth interviews. Survey respondents were mostly from the UK, white and female. 69% said they were currently taking hydroxychloroquine to treat their condition. Within that group, 29% said they did not always take their medicine as prescribed.
The study, published in the journal Rheumatology, provides insights into how clinician behaviour can positively or negatively influence patient behaviour, affecting medical relationships, medication adherence, and potentially causing under or over-treatment.
Many patients described how their reported symptoms were treated as less important than blood test results (which can be misleading in lupus-related conditions) and said the listening skills of clinicians were especially important. They also described a gap between the priorities they had for their treatment and the priorities of their doctors. Clinicians were perceived to be focused on preventing organ damage and death, but less than 10% of respondents cited these long-term impacts as reasons for adherence, referring to more immediate gains instead as reasons to stick to their medication:
I just want to maximise my quality of life now…I don’t want [my children] to remember me being ill all the time and in bed constantly. (female, 40s).
Almost a quarter of participants reported adhering to their medication because they had a supportive medical relationship:
I respect my rheumatologist, he’s knowledgeable, up to date and I believe he has my best interests at heart (female, 50s).
Trust in doctors was influenced by whether the clinician listened effectively, believed patient symptoms, were accessible in an emergency, shared information, and showed that they cared.
I feel that she [rheumatologist] doesn’t care about me and so I no longer care about my lupus treatment and medication either. The result is that I am a lot more patchy in taking my meds (female, 50s).
Some patients didn’t take their medications because of cognitive problems like confusion and memory loss. 35% of survey participants gave cognitive problems as the reason for medication non-adherence, and they needed clinicians to provide support and be non-judgemental.
The majority of interviewees reported current secure medical relationships, but past ‘Adverse Medical Experiences’ (AMEs) were found to have a persisting impact on medical security, psychological wellbeing, trust and satisfaction with care, including in support in managing medications/side effects.
Sometimes I feel it is pointless being honest as doctors never seem to listen properly and believe they know best rather than listening to suggestions and how I feel… Doctors don’t seem to care. (female, 20s).
This study has shown how important it is to really listen to our lupus patients, to get to know them, to be quickly there for them when they are struggling with symptoms or medications, and to find out each person’s treatment goals. A salutary lesson is that those who were non-adherent and those who didn’t tell their rheumatologists about non-adherence were often the ones who felt less listened to and less satisfied with their care.’
– Professor David D’Cruz, Consultant Rheumatologist, Louise Coote Lupus Unit at St Thomas’ Hospital
Often lupus patients have had stressful healthcare related experiences, including long diagnostic journeys (often much more than 1 year) and might go through misdiagnoses such as mental health conditions, which were commonly reported to have had persisting negative psychological impacts. AME’s seemed to lead to either high non-adherence to medications due to healthcare avoidance and distrust, or conversely, a determination to access treatment and a high adherence to medication.
Preferences for degree of control over medication decisions varied between participants. The vast majority preferred a fully-informed collaborative approach, and felt it improved acceptance and adherence:[Rheumatologist] and I looked at all the pros and cons of a medication…before a final decision was reached. It felt like a kind of joint brainstorming session and it meant that I felt entirely on board with the result (female, 50s).
An important finding was that only about a half of patients told their doctors about not taking their medication; and these patients had lower satisfaction with their care, particularly with regards to the listening skills and availability of their doctors.
Past medical interactions, particularly ‘Adverse Medical Experiences’ (AMEs) clearly have a long-term impact on satisfaction with care and patient behaviour. We are starting to explore whether the long-term psychological damage experienced by many of these patients is comparable, in some ways, to adverse childhood experiences. Our next study will combine the views, experiences and suggestions of clinicians and patients to help explore solutions to help bridge that patient-physician divide and encourage positive healthcare behaviours.’
– Melanie Sloan, lead author, Primary Care Unit, University of Cambridge
This research was funded by LUPUS UK.
Read the study: M Sloan, E Lever, C Gordon, R Harwood, S Georgopoulou, F Naughton, C Wincup, S Sutton, D D’Cruz ‘Medication decision-making and adherence in lupus: Patient-physician discordance and the impact of previous ‘Adverse Medical Experiences’ 13 July 2021 in Rheumatology. https://doi.org/10.1093/rheumatology/keab534
Contact: Lucy Lloyd, Communications, Primary Care Unit