Adherence is an ongoing challenge in healthcare; it has been suggested that patients only take half of their prescribed doses of self-administered medication.1 Despite the high incidence of non-adherence and obvious impact on outcome of any therapeutic intervention, adherence to medication is often overlooked when assessing a patient’s response to treatment.
As well as determining whether patients are adhering to their medication regime, it is important to elicit if non-adherence is intentional or unintentional, because this classification will influence potential strategies to overcome the issue. All healthcare professionals have a responsibility to help identify, reduce, or ideally eliminate, non-adherence and pharmacists both in the community or specialist rheumatology teams, as well as other allied health professionals, are in optimal roles to do this.
Although historically we have used terms like compliance, concordance and adherence to discuss if a patient takes medication as prescribed, in ankylosing spondylitis (AS) and many other chronic conditions, we actually need to consider adherence to blood monitoring regimens, outpatient appointment attendance and physiotherapy as well as the typical medication regimes.
Predominantly affecting males (3:1) and usually presenting in the second or third decade,2 AS often affects a working age cohort with a low prevalence of co-morbidity. If therapy is optimised and patients are successfully responding to treatment, reducing work disability, medication and monitoring regimens need to be flexible enough to minimise disruption to work. Something as simple as waiting in for home delivery of medication may not be convenient for some patients, so we need to consider making the management appropriate to the patient, for example by organising delivery of medication to a local community pharmacy or place of work.
With the introduction of biosimilars, intravenous therapy is now competitively priced and an available treatment option in AS, allowing more patient choice in therapy regimes. For example, a patient unable to administer weekly or two-weekly injections in their own home might prefer attending hospital once every eight weeks (after initial loading doses). As logistics play an important part in unintentional non-adherence, it is important to tailor regimes where possible to suit a patient’s lifestyle.
Patients who fail to manage their condition on non-steroidal anti-inflammatory drugs and analgesics may suddenly face the challenge of adhering to strict injectable drug regimes, self-monitoring for infection, hospital follow-up appointments and liaising with home delivery companies. This is where the role of the specialist nurse or pharmacist is crucial when initiating therapy. Not only is counselling on medication regimes important, but also combining it with discussing self-management plans (for example, how to manage a flare in AS) has been shown to be most effective.3
Factors affecting intentional non-adherence include perceptions of medication, fear about adverse effects, complexity of regimes, disbelief in potential efficacy and anger about different regimes; therefore, it is important that counselling addresses these issues. In a biologic therapy assessment appointment carried out by the specialist pharmacist or specialist nurse, patients are informed about the potential risks and benefits associated with therapy, how to self-screen for infections, avoiding live vaccines, and planning for elective surgery or going on holiday.
The rheumatology team at North Bristol NHS Trust has designed a patient information leaflet to summarise the key counselling points, to support patients when they are at home. Prior to starting treatment, the importance of adhering to medication regimes and requirement for blood monitoring and hospital follow-up is also discussed because this understanding may increase adherence. The specialist pharmacist and nurse continue to provide support once a patient has started on treatment, both at and between follow ups, the latter being provided by the rheumatology advice line. Patients are reminded how to use the advice line messaging service and encouraged to save the number in their phones.
When biologic therapy is initiated for management of the other common inflammatory arthritis conditions – rheumatoid arthritis and psoriatic arthritis – frequency of blood monitoring is usually stipulated by the co-prescribed DMARD, monitored in primary care under shared care protocols. AS differs from these because patients are commonly prescribed tumour necrosis factor (TNF) inhibitors as monotherapy, and also may have a lower incidence of blood abnormalities than patients with rheumatoid arthritis. Standard practice of requiring blood tests every three months (within the last three months before prescribing repeat therapy) for patients on TNF inhibitor monotherapy has been investigated for patients on TNF inhibitor monotherapy for AS, with the aim of reducing inconvenience for patients and blood monitoring burden on GP practices.
A recent audit at North Bristol NHS Trust4 and others5 looking at the number of abnormal blood tests in patients on TNF inhibitor monotherapy for AS has shown that decreased monitoring of full blood count and liver function tests to every six months is unlikely to compromise patient safety. This has now been incorporated into local practice; an example of the difference of the AS cohort to other chronic conditions as well as the importance of adapting services to suit the varied cohorts of patients.
Although we have seen a progression towards shared decision making in consultations, there is still further progression needed in making patients feel they can honestly report how well they adhere to medical intervention. Adherence has often been thought to reflect obedience and actually inhibits the open culture required to optimise a patient’s therapy. Healthcare professionals need to encourage patients to share this information. Allied health professionals are often seen as the friendly, non-judgemental figure who can provide advice, signpost and help improve adherence.
A service development for prescribing and monitoring biologic therapy, implemented by the rheumatology specialist pharmacist at North Bristol NHS Trust, provided a safety net to help catch the patients who are non-adherent to follow up (and subsequently blood monitoring). Prescribing was made in synchronisation with follow up appointments; patients are seen every three months for the first year, then six-monthly when stable, alternating between medic and non-medical prescriber. The team has adopted a ‘three strike rule’ in terms of prescribing repeat therapy in patients who fail to attend their appointments. On the third failure to attend a follow up appointment without prior cancellation, patients are warned that prescribing cannot continue until they are seen again in clinic.
The rheumatology team at North Bristol NHS Trust is also exploring the option of running telephone clinics with video calling, in between face-to-face hospital follow up, with patients entering their disease assessment scores online. The aim of this is to improve convenience for the working cohort of AS patients who are stabilised on therapy. A pilot of dose reduction by tapering the interval between injections is also underway, being offered after a minimum of two years to patients stabilised on biologic therapy. Again regimes are tailored to individual needs.
Healthcare professionals should support patients to feel empowered to identify why they are not taking their medications as prescribed, seek appropriate support and implement strategies to improve adherence. It is unlikely that one single intervention will improve adherence for all patients,3 therefore a combination of strategies, both simple and innovative, need to be considered. Specialist rheumatology teams should also be redesigning services that can be adapted to suit individual patients’ needs. This type of collaborative working should optimise medical intervention in the management of AS to reduce the incidence of pain, stiffness and impaired function, as well as structural outcomes of erosions, sclerosis and ankylosis.
- Adherence must be considered when assessing a patient’s response to treatment.
- Adherence relates to attendance to follow up, complying with monitoring and non-pharmacological management as well as medication adherence.
- Specialist pharmacists and specialist nurses have a key role in identifying and addressing non-adherence in patients with chronic conditions.
- Clinicians must support an open, no-blame culture to encourage patients to discuss adherence issues.
- Individual patients’ clinical and non-clinical circumstances must be considered when determining methods to address non-adherence.
- Nieuwlaat R et al. Interventions for enhancing medication adherence. Cochrane Database Sys Rev 2014;Issue 11.
- National Institute for Health and Care Excellence. TNF-alpha inhibitors for ankylosing spondylitis and non-radiographic axial spondyloarthritis. NICE technology appraisal guidance TA383. www.nice.org.uk/guidance/ta383 (accessed July 2016).
- Ryan R et al. Interventions to improve safe and effective medicines use by consumers: an overview of systematic reviews. Cochrane Database Sys Rev 2014;Issue 4.
- Gunasekera W et al. Monitoring patients with ankylosing spondylitis on anti TNF monotherapy: too much too often? (Letter) Rheumatology 2016 (submitted May 2016).
- Leeder J, Lonsdale E, Hamilton L. Do patients on anti TNF monotherapy need regular blood tests? An audit of blood monitoring in people with ankylosing spondylitis. Rheumatology 2016;55(Suppl 1): i116 Abstract 133.