Mair & May's editorial comes at just the right time, as increasing pressure is put on patients to self-manage albeit with a dearth of robust tools to help them do this - setting many patients up for failure.
For example many newer therapies involve self-injections or infusions rather than the traditional "little white pill" and these can be extremely challenging - self-administering a sub-cutaneous injection in multiple sclerosis, for example up to 15% of glatiramer acetate users unable to inject their full dose as prescribed (Wicks et al. 2011).
In one extreme case of patient burden, epoprostenol for pulmonary arterial hypertension must be made up each day from powder in a process involving over 40 steps (see a patient's self-recorded video here: https://www.youtube.com/watch?v=GtvQRxUaJUk) which if done improperly could have fatal consequences.
From the economic side, industry often raises red flags about the lack of proper incentives to optimize convenience for patients where true burden exists for a small patient pool, but they have on several occasions over-inflated the benefits of modest changes in dosing regimens (e.g. twice daily to once daily) for conditions with a much larger prevalence, which leaves payers and regulators in an awkward position.
A good start would be measurement of treatment burden built on a foundation of patient involvement. The further development of the Treatment Burden Questionnaire (TBQ) mentioned in the editorial has been able to take advantage of PatientsLikeMe's Open Research Exchange platform to involve 200 patients in providing item and instrument-level feedback, as well as over 600 patients in providing data for psychometric validation in the US, Canada, UK, Australia, and New Zealand (Tran et al. 2014).
The 15-item instrument taps domains such as the burden of daily regimens, self-monitoring, lab tests, financial burdens, and interactions with healthcare providers. The validation work has recently been published and the instrument licensed under Creative Commons, meaning it can be used, adapted, and iterated upon free of charge (Details at https://www.openresearchexchange.com/public/library/instruments/49/overview).
If we only fight the disease then the patient will inevitably suffer the collateral damage - assessment of treatment burden will be an important part of ensuring the right level of intervention for the right patients.
Tran V, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P (2014) Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform, BMC Medicine, 12(1):109
Wicks P, Massagli M, Kulkarni A, Dastani H (2011) Online Development of A Tool to Measure Barriers to Adherence: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ), Journal of Medical Internet Research, 13(1):e12
Competing interests: PW's disclosures listed on BMJ.com.