Patient activation in advanced chronic kidney disease: a cross-sectional study.

BACKGROUND: Patient activation refers to the knowledge, confidence and skills required for the management of chronic disease and is antecedent to self-management. Greater self-management in chronic kidney disease (CKD) results in improved patient experience and patient outcomes. AIM: To examine patient activation levels in people with CKD stage 5 pre-dialysis and determine associations with sociodemographic characteristics, treatment adherence and healthcare utilisation. METHODS/DESIGN: People with CKD stage 5 not receiving dialysis from one Australian kidney care service. Patient activation was measured using the 13-item Patient Activation Measure (PAM-13). Sociodemographic and clinical outcome data (emergency department visits, admissions) were collected from medical records. Morisky Medication Adherence Scale was used to determine self-report medication adherence. RESULTS: Two hundred and four participants completed the study. The mean PAM-13 score was 53.4 (SD 13.8), with 73% reporting low activation levels (1 and 2). Patient activation scores significantly decreased with increased age (P < 0.001) and significantly increased with higher educational levels (P < 0.001). Higher patient activation level was associated with fewer hospital emergency department visits (P = 0.03) and increased medication adherence (P < 0.001). CONCLUSION: Patient activation levels are low in people with CKD stage 5 not receiving dialysis suggesting limited ability for self-management and capacity for optimally informed decisions about their healthcare. Efforts to improve patient activation need to consider age and education level.

The impact on patients of the tertiary-primary healthcare interface in kidney failure: a qualitative study.

BACKGROUND: Clinicians and patients have reported fragmentation in the primary and tertiary healthcare interface. However, perspectives of service navigation and the impacts of fragmentation are not well defined, particularly for patients transitioning to dialysis. This study aimed to define patient perspectives of the functioning of the health service interface and impacts on healthcare experiences and engagement, informing patient-centred and outcomes-focused service models. METHODS: A qualitative study was conducted through semi-structured interviews with 25 dialysis patients (16 males) aged 34-78 receiving dialysis across a multi-site tertiary service. Transcripts were analysed thematically. RESULTS: Three main themes were identified: (1) The Changing Nature of General Practitioner (GP) Patient Relationships; (2) Ownership and Leadership in Kidney Care; and (3) The Importance of Nephrologist-GP Communications. Patients perceived an unreliable primary-tertiary service interface which lacked coordinated care and created challenges for primary care continuity. These impacted perceptions of healthcare provider expertise and confidence in healthcare systems. Patients subsequently increased the healthcare sought from tertiary kidney clinicians. The fractured interface led some to coordinate communication between health sectors, to support care quality, but this caused additional stress. CONCLUSIONS: A fragmented primary-tertiary healthcare interface creates challenges for patient service navigation and can negatively impact patient experiences, leading to primary care disengagement, reduced confidence in health care quality and increased stress. Future studies are imperative for assessing initiatives facilitating health system integration, including communication technologies, healthcare provider training, patient empowerment, and specific outcomes in health, economic and patient experience measures, for patients transitioning to dialysis.