It’s a question that confronts any health practitioner. We need to know whether the treatment we provided made a difference for our patient. We also (should) want the answer to inform the treatment of those patients to follow. For many specialties, Did I make a difference? is a straightforward question:
Infection resolved? Let’s take your temperature.
Has your cancer progressed? I’ll send you for a scan.
Unfortunately, this question is not so easily answered for all conditions.
Lymphoedema remains a tricky beast to measure. On the surface it seems straightforward. Is your swelling better or worse? We would assume that the patient could answer that question with confidence. Afterall, it is their limb. However, when self-report of size change is compared with objective measures, such as circumference measurement, it is only moderately reliable. Equally, symptom experience does not correlate with severity. Lymphoedema does not hurt more as it gets worse. Therefore, to do the work of the clinician: to detect, evaluate treatment effect, or monitor lymphoedema; objective measures are necessary.
Progress in visualising functioning lymphatics and radiological developments have revealed that there is a lot more going on under the surface than we first thought. We now ‘see’ the multiple effects of stagnant lymph – dermal thickness, adipose fat cell size and number, and inflammatory changes; not just a fluid problem. Some of these changes are reversible, others not. Therefore, lymphoedema is a multifactorial condition requiring a range of outcome measures. While the variety and sophistication of the tools available to measure these different elements of change grows, we too grow more accurate in the detection of lymphoedema and more able to ‘see’ some of the changes occurring below the surface, particularly fluid volume.
The difficulty presented by this range of outcomes and measurement tools is that the assessment undertaken can become costly – in terms of time, equipment, consumables, and space/storage requirements. Choice of assessment becomes resource dependent and inconsistencies develop for which outcomes are reported.
There are, however, some elements of the assessment process that are central to us all, whether we live in Tokyo, Harare, Sydney, or Naypyitaw. They are skills that are shared and honed over time. There is a shared language that has been developed to make sense of(classify) the changes we see and feel, and this language has evolved alongside the scientific developments occurring. My goal has been to locate the (current) point of agreement and digitise the collection of this data set so we can be more consistent in how we report change to ourselves, to our patients, our colleagues, and for the purpose of research.
For reasons of efficiency and effectiveness, I had long wanted to access a digital solution to simplify the storage, processing and display this information, particularly the analysis of circumference measurements and presentation of size changes. Being unable to find this solution I embarked on this (slightly terrifying) path to develop one. Please join us if you see value in this vision as well.