What is the cost of managing a rare condition?

The answer to this question might depend on who you ask. Healthcare providers are likely to consider costs which relate directly to services for rare disease patients, such as clinician’s time, the costs of tests and treatments, and clinic administration costs. An NHS commissioner may be interested in the costs associated with inpatient and outpatient attendances since these figures inform funding decisions for specialised and non-specialised services. The answer to this question might also depend on the type of data which is available.

But, what about the wider costs of managing a rare condition? What about the costs to those outside of the health service – social services, patient organisations and the patients themselves? What about the costs which are not routinely collected for research or service evaluation purposes? Without this information, we can never really quantify the true cost of managing rare conditions.

In a recent study, we asked patients and families to tell us about the costs they incur as a result of managing their/their family member’s rare condition. They told us about a wide range of different costs including financial, social and psychological costs.  For example, many reported facing significant costs as a result of travelling to frequent medical appointments to see different specialists in different locations. Costs included petrol, hospital parking, public transport, accommodation, food, and childcare costs. Time was also a huge cost to patients and their carers who described themselves as full time ‘care coordinators’ and ‘project managers’; they spent time everyday attending appointments, making calls and writing emails. For many, the demands of managing a rare condition impacted on many aspects of their lives including their ability to work.

How can these costs be reduced for patients and families? The way that patient care is organised and coordinated is likely to have an impact on the cost of managing a rare condition – not only for the NHS but also for patients and families. Further research is needed to evaluate the full costs associated with different models of care for rare disease patients. Such information would be invaluable to NHS commissioners when they are developing services, and deciding which services would be most cost effective and valuable to patients.

You can find out more about the findings of our Hidden Costs Feasibility Study and future research in this area by visiting the project webpage or by contacting our Director of Research, Dr Amy Hunter.

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