Development and validation of a measure of treatment burden for people receiving dialysis treatment.

Dialysis is life-saving and central to management of people living with advanced kidney disease but is extremely demanding on both people receiving it and their family and carers. Treatment, as opposed to disease burden however remains poorly assed. This presents a challenge to evaluating changes to treatment regimens where burden is reduced, but clinical outcomes and quality of life may remain unchanged. A measure of treatment burden is therefore essential to supporting initiatives to improve the delivery of dialysis.
Those receiving in-centre haemodialysis need to travel for thrice weekly sessions, each lasting 3-5 hours. Most need needles inserted into forearm vessels. Distressing symptoms including cramps and faintness are common during sessions and post-dialysis fatigue even more common. The pill load is high. There are dietary and fluid restrictions. Many also experience symptoms related to kidney failure itself and to other common comorbidities. All this impacts on patients’ work and social lives, resulting in poor quality of life. SONG-HD has highlighted such issues as of “critically importance” to most people.
We need to be able to measure treatment burden of people on dialysis. This would provide benefits on three levels - allow assessment of the effects of changes to treatment regimens in everyday clinical practice – in Quality Improvement initiatives to assess unit level changes, and as a research tool for use in trials replacing standard quality of life (QoL) instruments which are insufficiently sensitive to changes in treatment burden. There are recommendations that the need to take account of treatment burden be included in clinical guidelines.
We recently completed a scoping review of instruments of potential use in measuring treatment burden in dialysis. Of standard QoL instruments only the KDQoL has a ”burden of disease” domain. Other instruments measure burden of disease, symptom burden, pill burden and carer burden but none specifically address treatment burden in dialysis. Three validated instruments measure treatment burden in chronic disease, Treatment Burden Questionnaire (TBQ), Patient Experience with Treatment and Self-management (PETS) and Multimorbidity Treatment Burden Questionnaire (MTBQ). These address many dimensions of treatment burden but not the unique balance between workload demanded of the patient by dialysis, and the patient’s capacity to meet this demand.