Overview of Self-Management Resources Used by Canadian Chronic Kidney Disease Clinics: A National Survey

Abstract

Background:Chronic kidney disease (CKD) clinics across Canada provide tailored care for patients with CKD with an aim to slow progression and prevent complications. These clinics provide CKD self-management resources; however, there is limited information about what resources are being used by clinics. We undertook a survey of CKD clinics across Canada to identify self-management resources for adults aged 18 years and over with CKD categories 1 to 5 and not requiring dialysis or transplant.Objective:To identify and collate self-management resources (eg, strategies, tools, educational materials) used by CKD clinics across Canada for adults with CKD (categories 1 to 5, not requiring kidney replacement therapy).Design:Self-administered, semistructured electronic survey.Setting, participants:Canadian CKD clinics with previously identified contact information.Methods and measurements:We contacted 57 CKD English-speaking clinics and invited them to complete an online survey. The survey was available from October 2016 to January 2017 and consisted of 17 questions regarding the use and attributes of self-management resources including topic, delivery format, provider, target population, where the intervention was provided, and resource languages.Results:Forty-four clinics (77%) completed the survey. The most common topic was modality education provided in print format, by nurses. The most frequently used resource was the Kidney Foundation of Canada (KFOC) Living With Kidney Disease manual. We also identified that the majority of resources were available in English, targeting both patients and caregivers in the outpatient setting.Limitations:Our survey included Canadian adult CKD clinics, which may not be generalizability to other settings, such as care of people with CKD in primary care.Conclusions:Adult CKD clinics across Canada provide some similar resources, but also provide many different self-management resources. Even though some of the same resources were used by multiple clinics, the way they were provided them (ie, provider, location, delivery format) varied by the individual clinics. Knowledge of self-management resources currently provided in CKD clinics, along with synthesis of the literature and patient preferred self-management strategies, will inform the design and development of a novel self-management intervention that is patient-centric and adheres to the principles of self-management.

Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop

“…7 Five patient partners and 1 caregiver were engaged in the previous phases of this work, including a scoping review, a survey of chronic kidney disease clinics, analysis of behaviours of patients with chronic kidney disease and caregivers by means of the Theoretical Domains Framework and a qualitative study. 5,6,8,9 This has laid the foundation for the present study. Based on the qualitative study, 8 topic areas were identified -understanding chronic kidney disease, diet, medications, symptoms, finances, mental and physical health, travel and work/school -as well as features including mixed-content formats (e.g., visuals, text, user-generated content).…”

“…5 Traditionally, self-management interventions for patients with chronic kidney disease have included education and support through face-to-face interactions, with minimal use of electronic health (e-health) tools (e.g., websites, mobile apps, short-messaging service). 6 The use of e-health tools, including the Internet, mobile-phone-based apps, computer-based tools and mixed-mode tools, may enhance patient self-management. Although e-health tools will not replace the provider-patient relationship, they are a potential platform to augment support for chronic kidney disease self-management.…”

“…At the beginning of the workshop, held on June 13, 2018, the main facilitator (M.D.) presented background information, including results from a scoping review of support interventions for chronic kidney disease self-management, 8 a survey of Canadian chronic kidney disease clinics to identify their resources used 6 and findings of a qualitative study of needs of patients with chronic kidney disease and caregivers. 5 Facilitators moderated 4 heterogeneous small groups (representatives from all stake-holder groups) using a discussion guide (Appendix 2, available at www.cmajopen.ca/content/7/4/E713/suppl/DC1), directing participants to assume a persona lens and provide input regarding the persona's needs for each topic area and e-health feature category.…”

A Web-Based Self-Management Support Prototype for Adults With Chronic Kidney Disease (My Kidneys My Health): Co-Design and Usability Testing

“…This study is informed by our previous work using a collaborative and systematic approach to determine the best practices for CKD adult self-management support interventions [7,13,[15][16][17]. Specifically, our work is guided by the integrated knowledge translation (IKT) method [18] and the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) patient engagement principles [19].…”

“…Many individuals with CKD receive self-management education and support through face-to-face interactions in the clinic setting [ 7 ]. However, with increasing access to the internet [ 8 ] and the nature of pandemics, the potential for an eHealth platform to provide easy access and timely, tailored information and support could be a sustainable way to enhance self-management strategies.…”