OBJECTIVES: Distal renal tubular acidosis (dRTA) is a genetic or acquired, chronic, progressive kidney disease causing metabolic acidosis and hypokalaemia, treated with alkali salts. The aim of this project was to provide insights into dRTA patient characteristics, comorbidities, health-related quality of life (HRQoL) and treatment satisfaction.

METHODS: Demographic, treatment-specific, Paediatric Quality of Life Inventory Generic Core Scale (PedsQL 4.0) and Treatment Satisfaction Questionnaire for Medication (TSQM 1.4) data were collected and analysed for patients from a single UK centre. Linear and logistic regressions were undertaken to determine factors impacting adherence, missing doses, HRQoL and treatment satisfaction.

RESULTS: 27 patients (81% women), mean age of 52.33 years old (standard deviation (SD) 15.04), participated in clinician-led interviews.

The majority (78%) received potassium citrate48% of patients reported missing doses during the previous month. Approximately half of patients reported three or more associated clinical features, such as muscle weakness/cramps (56%), nephrocalcinosis (52%) and rickets/osteomalacia/osteoporosis (52%), while 41% had chronic kidney disease (majority stage 3).

PedsQL mean values for ‘Physical’ and ‘Psychosocial’ health were 68.17 (SD 26.33) and 75.49 (SD 12.62), respectively, with the Total Score being 72.95 (SD 16.52). TSQM questionnaire resulted in a mean 67.49 (SD 16.72) for the ‘Effectiveness’ domain, 70.99 (SD 19.02) for ‘Convenience’ and 66.77 (SD 16.04) for ‘Global satisfaction’. Eight patients reported side effects providing a 69.53 (SD 15.47) mean for the ‘Side effects’ domain. Both questionnaires have ceiling values of 100, with higher values representing better outcomes.

Convenience, living/family situation and age were the factors that mainly affected treatment adherence, while effectiveness and age the PedsQL scores and treatment satisfaction. No statistically significant factors were associated with missing treatment dosages.

CONCLUSIONS: With standard of care at this centre, most dRTA patients missed dosages in the previous month, reporting adverse events, comorbidities, impaired HRQoL and average treatment satisfaction.