Dr Ayano Kelly

The Allan and Beryl Stephens Grant provided scholarship funds for me to undertake my second year in PhD studies at the Australian National University. In all chronic diseases, patients are said to take around 50% of the medications they are prescribed. In rheumatic conditions such as rheumatoid arthritis (RA) and spondyloarthritis (SpA), there is evidence of suboptimal medication adherence, and increased arthritis flares and disability as a result. I aimed to understand the patients’ and caregivers’ perspectives around difficulties of medication taking in Rheumatology and improve the strategies that are designed to help support patients with their medications. I have 6 studies planned for my PhD. The studies have taken a slightly different direction from what was originally planned. I have now included research with populations outside of RA and SpA including transitional care patients in Rheumatology, gout patients and osteoporosis patients. Rather than the planned pilot intervention study, I have formed a medication adherence special interest group in OMERACT (Outcome Measures in Rheumatology), which is an international organisation focusing on standardising outcomes across trials in Rheumatology. My studies also focus on standardising outcomes in trials that test strategies to improve medication adherence in Rheumatology.

The studies that will be included and their progress are summarised below:

• Systematic review of interview (qualitative) studies of RA and SpA patients, on their perspectives on disease modifying anti-rheumatic drugs – published in a medical journal
• Cross sectional (questionnaire study at one period of time) study, to determine medication adherence rates and factors associated with adherence in RA and SpA patients at Canberra Hospital – completed, draft manuscript written and ready to submit for publication shortly
• Clinician interview study – interviews with rheumatologists from Australia and around the world on ideas on how to better support RA and SpA patients with their medication taking – all interviews completed, ready for data analysis and write up
• Systematic review of interview (qualitative) studies of transitional care patients in Rheumatology, on their perspectives and needs during transition, and in particular how this relates to medication adherence – ready for final data analysis and write up.
• Focus group study with ranking exercise (nominal group technique) with gout, RA and osteoporosis patients and their caregivers – 8 focus groups complete, 4 more focus groups planned in Australia in September 2018.
• Systematic review of adherence related outcomes and measures in trials of interventions aimed to improve medication adherence in Rheumatology – underway.

The grant set out to understand medication adherence from a patients’ and caregivers’ perspective and suggest solutions that can be employed by a rheumatologist. It also aims to improve the quality of adherence intervention research by standardising the outcomes used. This is important as many adherence interventions are not successful in improving adherence, and those that are successful have modest effects at best. My studies focus on creating solutions for medication non-adherence by understanding patients’ needs, and making sure that interventions that are designed and tested for medication adherence are aiming to improve things that matter to patients’ and caregivers. A broad range of patient populations were included so that solutions can be applicable to a larger group of Rheumatology patients. Interviews with rheumatologists aimed to see what strategies clinicians from around the world employ to help support their patients with their medication taking, and to ensure that new strategies that are suggested would be practical and could be used to improve clinical care. During the course of the grant, it has become clear that medication adherence is a complex topic. Over 200 reasons have been reported in research papers to exist that influence medication adherence. My studies have demonstrated many factors that influence medication taking.

The systematic review of 56 studies in RA and SpA including 1383 participants found that patients can equate their mediations with intensifying disease identify and distressing uncertainties and consequences. A trustworthy, confident and knowledgeable physician can help negotiate treatment expectations and improve medication acceptance and adherence. Patients wish to maintain control, can be swayed by social influences and appreciate privileged access to biologic agents.

The cross-sectional study of 48 RA and 43 SpA patients from Canberra hospital found high rates of medication adherence using a self-report questionnaire and by looking at pharmacy refill records. However, low participation rates and limitations of the measures of adherence highlighted the need for more accurate, objective data to determine levels of adherence in this population. Multiple factors were tested in questionnaires for an association with adherence, and none were found to be significantly associated. Further work is needed to assess the reasons for non-adherence in rheumatology.

In our focus groups with gout, RA and osteoporosis patients and their caregivers, 46 participants identified more than 40 factors to influence adherence. The five top ranked factors were: trust in doctor, medication effectiveness, medication side effects, doctor’s knowledge and disease knowledge. These factors were amongst the top ten factors in subgroup analyses of patient/caregiver, condition and gender. Caregivers ranked medication side effects higher, and trust in doctor lower than patients.

The systematic review of qualitative (interview type) studies on transitional care in Rheumatology showed that there were limited studies (18 studies, predominantly with juvenile idiopathic arthritis patients). A synthesis of the studies found that successful transition can be nurtured by building trust in familiarity, creating a sense of belonging and facilitating an adolescent’s quest for autonomy. However some patients feel de-personalised, abandoned, ill prepared and out of control of the transition process. Patients wanted to be supported with issues they faced in work, education, relationships and with self –esteem. However, they felt that their health care providers focused on their clinical outcomes and medications rather than the issues that were most important to them. 14 Australian rheumatologists and 15 international rheumatologists from Canada, France, Germany, Japan, The Netherlands, Norway, Portugal, Singapore, Spain and Switzerland have participated in the clinician interview study. Many clinicians emphasised the importance of good patient-physician communication and relationship as being key to supporting medication adherence. In addition, participants valued working collaboratively with other health professionals such as social workers and pharmacists. The systematic review of outcomes in adherence trials showed the disconnection between strategies used to improve medication adherence and what is important to patients and caregivers to from our studies. From the 25 studies analysed in this systematic review so far, the top 5 reported outcome domains were; adherence (25 [100%] trials), medication knowledge (4 [16%]), then medication beliefs, medication necessity, and self-efficacy all reported in 3 [12%] trials. In addition, 31 unique ways of measuring adherence were identified. Medication adherence research in Rheumatology would benefit from better standardisation of adherence measures and ensuring the strategies used match patient and caregiver priorities. I have presented the findings of the studies outlined above at multiple international and national meetings to rheumatologists, nurses and other health care professionals, patient research partners and other researchers. This has helped me as a rheumatologist, and hopefully other clinicians in understanding what our patients experience with their medications. The research helps to think of solutions to better support patients’ needs around their medication taking, and overall care. I think that in the future it will help improve communication and trust between doctor and patient, and lead to better patient-focused solutions to improve support for medication taking. I will complete the six studies for my PhD in the next year. After this I plan to continue doing research with the OMERACT-Adherence special interest group to improve the quality of the interventions designed to support medication adherence in Rheumatology, and incorporate outcomes that are important to all stakeholders, especially patients.