Patients' and kidney care team's perspectives of treatment burden and capacity in older people with chronic kidney disease: a qualitative study.
OBJECTIVE
Chronic kidney disease (CKD) is often a multimorbid condition and progression to more severe disease is commonly associated with increased management requirements, including lifestyle change, more medication and greater clinician involvement. This study explored patients' and kidney care team's perspectives of the nature and extent of this workload (treatment burden) and factors that support capacity (the ability to manage health) for older individuals with CKD.


DESIGN
Qualitative semistructured interview and focus group study.


SETTING AND PARTICIPANTS
Adults (aged 60+) with predialysis CKD stages G3-5 (identified in two general practitioner surgeries and two renal clinics) and a multiprofessional secondary kidney care team in the UK.


RESULTS
29 individuals and 10 kidney team members were recruited. Treatment burden themes were: (1) understanding CKD, its treatment and consequences, (2) adhering to treatments and management and (3) interacting with others (eg, clinicians) in the management of CKD. Capacity themes were: (1) personal attributes (eg, optimism, pragmatism), (2) support network (family/friends, service providers), (3) financial capacity, environment (eg, geographical distance to unit) and life responsibilities (eg, caring for others). Patients reported poor provision of CKD information and lack of choice in treatment, whereas kidney care team members discussed health literacy issues. Patients reported having to withdraw from social activities and loss of employment due to CKD, which further impacted their capacity.


CONCLUSION
Improved understanding of and measures to reduce the treatment burden (eg, clear information, simplified medication, joined up care, free parking) associated with CKD in individuals as well as assessment of their capacity and interventions to improve capacity (social care, psychological support) will likely improve patient experience and their engagement with kidney care services.
['Hounkpatin|Hilda O|HO|0000-0002-1360-1791', 'Leydon|Geraldine M|GM|', 'Veighey|Kristin|K|', 'Armstrong|Kirsten|K|', 'Santer|Miriam|M|', 'Taal|Maarten W|MW|0000-0002-9065-212X', 'Annells|Pete|P|', 'May|Carl|C|', 'Roderick|Paul J|PJ|', 'Fraser|Simon Ds|SD|0000-0002-4172-4406']
D000328:Adult D000368:Aged D000369:Aged, 80 and over D017281:Cost of Illness D005260:Female D017144:Focus Groups D006801:Humans D007668:Kidney D008297:Male D008875:Middle Aged D010348:Patient Care Team D036301:Qualitative Research D051436:Renal Insufficiency, Chronic D012944:Social Support
organisation of health services public health qualitative research quality in health care