What have you given your patients lately?
The secrets out when it comes to patient compliance, information matters. Access to information increases patient confidence and involvement in the decision making process, reduces anxiety and isolation and improves self-care behaviors and clinical outcomes, Lynn Fox, information officer at the UKs Multiple Sclerosis Trust told attendees at eyeforpharmas Pharma Relationship Marketing and Adherence 2009 conference.
The UK National Health Service Constitution 2009 is clear: you have a right to be involved in discussions and decisions about your healthcare and be given information to enable you to do so. But Fox says recent research by Heesen shows that 80% of patients with MS want to take an active role in treatment decisions, but feel they had insufficient information to allow them to do this.
In fact, she says, such findings prompted a partnership among the Association of British Pharmaceutical Industries (ABPI), the Neurological Alliance (an umbrella organization of 50 patient groups) and the Ask About Medicines independent campaign to examine the extent of the problem. What the group found was that among neurological disease patients:
- Only 18% felt they had sufficient information about their condition
- Just 34% felt confident enough to ask questions
- 43% had no contact details for a healthcare professional to consult
- And 35% didnt know how to find information about medications used to treat their condition
Doling out information
Based on the findings, the groups recommended that patients be treated by a healthcare professional who attaches priority to giving information to patients and that newly diagnosed patients be given an information packet and point of contact for additional information about treatment. But Fox says taking action and making the recommendations a reality is easier said than done.
And shes the first to admit that information alone isnt enough. Beyond empowering patients with information, Fox says, we must ensure that right at the beginning of treatment they have very realistic expectations.
When it comes to MS, the hurdles to adherence are numerous and high, she says. First, nearly all MS drugs are injectable, the least patient-friendly delivery format. In addition, treating MS is a long-term commitment, taking the prescribed medication even when symptoms arent present is a constant reminder of the disease and none of todays treatments offers a cure, she says.
Its no surprise, Fox says, that non-adherence to prescribed drug therapies among MS patients ranges from 6-43%. The most common reasons include forgetting to take medication, undesirable side effects, tiring of treatment, fatigue, depression and lack of efficacy.
Intentional, or not?
While some of these reasons for failing to follow through with prescription drug treatment are unintentional, others are not. To combat hesitation due to side effects, Fox says, management strategies are needed by patients. Meanwhile, complaints of a lack of efficacy can be combatted by helping patients to adopt realistic treatment expectations. And treatment fatigue can be alleviated by helping patients to fully understand the risks of non-adherence.
All of these approaches require educating patients by sharing the right information with them, Fox says. But with the help of pharmaceutical companies, the UK government, academic researchers and other patient groups, the MS Trust has developed both printed and online information resources for patients living with MS.
The materials, particularly the online resource called Staying Smart, help patients tackle some of the most debilitating aspects of living with MS that lead to unintentional non-adherence, including cognitive issues, fatigue and depression. And while information alone isnt enough, Fox says research by Thorne and colleagues in 2004 showed that good quality information thats well communicated has a real impact on self-efficacy, or a patients belief in their own ability to manage their condition. And the Thorne group showed that a one unit increase on the MS self-efficacy scale led to a three-fold increase in adherence.
Fox says that in 2003 Fraser suggested three factors for improving adherence in MS: self-efficacy, good relationships with healthcare professionals and hope. They're all tied to good information it seems - and perhaps the most important and impactful is hope.