So what’s the problem? Well, patients in England now say they are being seen quickly – a major improvement from only 5 years ago: they also still have a high level of trust in their doctors but they’re getting less information about medicines than previously and do not feel involved in decisions about their treatments.
We don’t yet have data from primary care about the discussions that take place when people attend for a CKD check-up. Diabetes might give us a clue – nearly 100% of people with diabetes are offered appointments for review.
Less than 50%, and falling, report that they almost always ….
…. discuss ideas about the best way to manage their diabetes at their check-up
…. agree a plan to manage their condition over the next 12 months at their check-up
…. discuss their goals in caring for their diabetes at their check-up
I know from talking to those working in primary care, the research groups studying CKD management in primary care such as the Greater Manchester Collaboration for Leadership in Applied Health Research & Care (CLAHRC) and the Health Foundation and Kidney Research UK funded Quality Improvement in CKD initiative that information for people with reduced GFR remains one of our blind spots. We know that quite a number of people are placed on CKD registers and aren’t even told. Given the public understanding of diabetes it would seem highly unlikely that people with kidney disease have a richer interaction when they are reviewed.
We also know there is large variation in the uptake of healthcare interventions. For instance, there is a four-fold variation in knee replacement between different primary care trusts across the country. Given that primary knee replacement costs £5808, potential savings are £39M if PCTs with rates higher than the median reduce to this level. But beware because we don’t know what the right level is! Sticking with knee replacement for a moment, satisfaction questionnaires show that only 80% of people are satisfied with the outcomes of their knee replacement surgery and satisfaction was highly correlated to the Oxford knee score. So if people knew their Oxford knee score before they decided on surgery would everyone choose that option or would some of the 20% who didn’t get any symptomatic or functional improvement from surgery opt not to undergo the procedure?
Shared decision making supports individuals so they can make rational, health and medical decisions based on a consideration of the benefits and risks for them and their own personal values and preferences.
Shared decision making is a process in which the patient and clinician together reach an informed decision about the plan of care on the basis of the patient’s clinical needs, priorities and values.
The clinician’s expertise lies in diagnosis and identifying treatment options according to clinical priorities; the patient’s role is to identify and communicate their informed understanding, values and personal priorities, as shaped by their social circumstances. Patient decision aids are tools that prepare patients for consultations by explaining options, quantifying risks and benefits, helping patients to clarify their values and providing structured guidance in deliberation and communication.
The future is already here. NHS Direct offer a knee arthritis decision support tool for people with arthritis of the knee who have pain, stiffness, limited mobility or other symptoms that may make everyday activities difficult. Its purpose is to help people decide which approach to treatment for knee arthritis is right for them. The decision support tool uses the Oxford knee score to help identify how much pain and discomfort the knee is causing. Patients input information about themselves and their knee pain, information comparing the various treatment options is given and knowledge is checked. Through this process patients explore what is the best option for them. Most people use the tool online, but it can also be delivered over the telephone. The tool doesn’t make the decision for the patient, it provides the basis for the informed discussion and shared decision making with the healthcare professionals.
So what’s the effect? A review of 10 systematic studies of patient decision aids found they improved patients’ participation, increased their knowledge of treatment options, realigned their expectations and improved the match between their values and subsequent treatment decisions. A Cochrane review in 2009 found that in most instances the use of decision aids reduced rates of surgery, both in North America and the United Kingdom.
Given the critical importance of preparation and choice in the year before end stage renal failure, advanced kidney disease would seem to be a good place to see if shared decision making and decision support tools could play a part in improving the experience and outcome of care for people faced with options of dialysis or conservative kidney care. Most of the work on decision aids has been for surgical interventions but I can see no reason why the principle of “give people the care the need and know less, the care they want and know more” shouldn’t apply to long term medical conditions as well as surgery.