None listed
Conditions
Brief summary
Chronic kidney disease (CKD) is a complex health condition that has a profound impact on an individual’s general health and wellbeing and consumes enormous economic resources. The lifetime of living with CKD requires individuals to actively manage their own healthcare needs where possible. Health services in Australia have had limited success in encouraging self-management among people with CKD. To overcome these low levels of self-management, a new patient activation approach has been identified. Patient activation requires relevant healthcare knowledge, skills, and confidence in order to achieve optimal self-management. A growing body of research in chronic conditions has shown low activation is associated with higher symptom burden, higher hospital admissions rates and reduced health-related quality of life. However, a complete understanding of patient activation in the CKD population is limited, creating a challenge to develop the strategies required to address low patient activation and low self-management. This study aims to identify: (1) the current status of patient activation levels in people with advanced CKD (2) measure the association between patient activation and patient sociodemographic characteristics, clinical variables, treatment adherence and emergency visits/hospital admission rate. This study will result in a better understanding of patient activation and enable kidney care teams to target appropriate individuals and propose strategies to move towards a more active role for patients and their family in their own health care.
Interventions
Flyers of the study will be distributed in all CNARTS outpatient renal clinics. All patients who meet the inclusion criteria will be approached by the Kidney Care Program (KCP) nurse involved in the patient’s care. Potential participants will be approached:
(1) in-person when they attend the renal appointments at Central Northern Adelaide Renal and Transplantation Service (CNARTS) outpatient settings (RAH, QEH, Hampstead & LMH) to provide information of the study and invite to participate. The
Flyers of the study will be distributed in all CNARTS outpatient renal clinics. All patients who meet the inclusion criteria will be approached by the Kidney Care Program (KCP) nurse involved in the patient’s care. Potential participants will be approached: (1) in-person when they attend the renal appointments at Central Northern Adelaide Renal and Transplantation Service (CNARTS) outpatient settings (RAH, QEH, Hampstead & LMH) to provide information of the study and invite to participate. The nurse will provide the potential participant with the flyer of the study and the Participant Information and Consent Form (PICF) with details of the study and sufficient time to read this form and ask questions. If the individual agrees to participate, the patient will be asked to sign the Consent Form prior to commencing the study. (2) via telehealth or telephone: detailed information of the study will be provided. If the individual agrees to participate, the Remote Informed Consent Confirmation Form (Form RC) will be verbally consented prior or after the participant review of the PICF that will be forwarded to the participant via email or via post. The participant must be given sufficient time to read PICF and ask questions. Participants will be informed that they are free to decide not to participate, and to withdraw from the study at any time. Participants will be informed that their decision will not in any way affect their current or future care by their treating renal team. The participant will have LL (principal investigator) contact details to contact if a question arises. For individuals participating in the study, two surveys (a 13-point Patient Activation Measure (PAM-13) and the 8-point Morisky Medication Adherence Scale (MMAS)) will be provided only once to complete some demographic questions. Each questionnaire will take approximately 10 minutes to complete. Demographic, clinical and outcome data will be extracted by local investigators from participants and electronic medical records on paper and then into a pre-developed SA Health-based REDCap program. Treatment adherence to recommended vaccinations (Covid and flu vaccine), renal outpatient appointment non-adherence, emergency visits, and the hospitalization admission rate will be assessed; this additional data will be collected from medical records only, with no further involvement by the participant required. All data will be de-identified in REDCap before being analysed by local investigators (LL, MB, RL and a research assistance to recruit). Data will be collected from 1st of July 2022 to 31st March 2023.
Sponsors
Laura Lunardi
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
-Chronic Kidney Disease stage 5, also called End Stage Kidney Disease - Stage 5: less than or equal to eGFR below 15 ml/min/1.73 m2 -Aged: greater than or equal to 18 -Referred to the Kidney Care Program (new and existing)
Exclusion criteria
• Unable to provide informed consent and/or participate in the study • Patients admitted in hospital • Kidney transplanted patients • Patients undergoing dialysis
Outcome results
None listed