Meeting patients where they are: improving outcomes in early chronic kidney disease with tailored self-management support (the CKD-SMS study)

Douglas, Clint; Bonner, Ann

doi:10.1186/s12882-018-1075-2

Cited by 35 publications

(31 citation statements)

References 61 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The level of activation and ability to self-manage conditions play an important role in patient's overall health and wellbeing, especially for those presenting with multimorbidity [20,22]. There is a growing body of evidence indicating that patients who are actively engaged in health care system have improved health-related quality of life and clinical outcomes [23][24][25]. In addition, patients with high activation levels are often empowered through shared decision-making with their GPs and are reported to have better adherence to treatment regimens and lower hospital admissions compared to patients with lower activation scores [26,27].…”

Section: Introductionmentioning

confidence: 99%

Outcomes of a 12-month patient-centred medical home model in improving patient activation and self-management behaviours among primary care patients presenting with chronic diseases in Sydney, Australia: A before-and-after study.

John

Tannous

Jones

2020

Preprint

View full text Add to dashboard Cite

Background: Studies report that increased levels of patient activation is associated with increased engagement with the health care system, better adherence to treatment protocols, and improved health outcomes. This study aims to evaluate outcomes based on a 12-month Patient-Centred Medical Home (PCMH) model called ‘WellNet’ on activation levels of patients with one or more chronic diseases in general practices across Sydney, Australia.Methods: A total of 636 patients aged 40 years and above with one or more chronic conditions consented to participate in the WellNet program delivered across six general practices in Northern Sydney, Australia. The WellNet intervention includes a team-based care with general physicians and trained chronic disease management care coordinators collaborating with patients in designing a patient-tailored care plan with improved self-management support and care navigation according to the level of risk and health care needs. Level of patient activation was measured using the validated PAM 13-item scale at baseline and follow-up. A before and after case-series design was employed to determine adjusted differences between baseline and 12-months using repeated measures analysis of covariance (ANCOVA). Additionally, backward stepwise multivariate regression models were employed to identify significant predictors of activation at follow-up.Results: Of the 626 patients, 420 reported their PAM scores at follow-up. The mean (SD) baseline PAM score was 57.9 (13.0). The adjusted model showed significant mean difference in PAM scores of 6.5 (95% CI 5.0-8.1; p-value<0.001) after controlling for baseline covariates. Multivariate regression models showed that older age (B = -0.14; 95% CI -0.28, -0.01) and private insurance (uninsured patients) (B = -3.41; 95% CI -6.50, -0.32) were significantly associated with lower PAM scores at 12 months whereas higher baseline PAM scores (B = 0.48; 95% CI 0.37, 0.59) was significantly associated with higher follow-up PAM scores.Conclusion: The WellNet study is the first of its kind in Australia to report on changes in the patient activation levels among patients with one or more chronic diseases. PCMH has the potential to improve patient activation and engagement which can lead to long-term health benefits and sustained self-management behaviours.

show abstract

Section: Introductionmentioning

confidence: 99%

Outcomes of a 12-month patient-centred medical home model in improving patient activation and self-management behaviours among primary care patients presenting with chronic diseases in Sydney, Australia: A before-and-after study.

John

Tannous

Jones

2020

Preprint

View full text Add to dashboard Cite

show abstract

“…2 Self-management, a complex set of processes that involves acquiring knowledge, skills and confidence to manage a chronic disease, 3 has the potential to positively affect clinical outcomes and quality of life for patients with chronic kidney disease. 4 There is the opportunity to involve patients in the development of self-management support interventions that meet their needs, specifically around the areas of knowledge, how they receive knowledge and timeliness of the information. 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).…”

Section: Openmentioning

confidence: 99%

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

Donald

Beanlands

Straus

et al. 2019

cmajo

View full text Add to dashboard Cite

Background: Electronic health (e-health) tools may support patients' self-management of chronic kidney disease. We aimed to identify preferences of patients with chronic kidney disease, caregivers and health care providers regarding content and features for an e-health tool to support chronic kidney disease self-management. Methods: A patient-oriented research approach was taken, with 6 patient partners (5 patients and 1 caregiver) involved in study design, data collection and review of results. Patients, caregivers and clinicians from across Canada participated in a 1-day consensus workshop in June 2018. Using personas (fictional characters) and a cumulative voting technique, they identified preferences for content for 8 predetermined topics (understanding chronic kidney disease, diet, finances, medication, symptoms, travel, mental and physical health, work/school) and features for an e-health tool. Results: There were 24 participants, including 11 patients and 6 caregivers, from across Canada. The following content suggestions were ranked the highest: basic information about kidneys, chronic kidney disease and disease progression; reliable information on diet requirements for chronic kidney disease and comorbidities, renal-friendly foods; affordability of medication, equipment, food, financial resources and planning; common medications, adverse effects, indications, cost and coverage; symptom types and management; travel limitations, insurance, access to health care, travel checklists; screening and supports to address mental health, cultural sensitivity, adjusting to new normal; and support to help integrate at work/school, restrictions. Preferred features included visuals, the ability to enter and track health information and interact with health care providers, "on-the-go" access, links to resources and access to personal health information. Interpretation: A consensus workshop developed around personas was successful for identifying detailed subject matter for 8 predetermined topic areas, as well as preferred features to consider in the codevelopment of a chronic kidney disease self-management e-health tool. The use of personas could be applied to other applications in patient-oriented research exploring patient preferences and needs in order to improve care and relevant outcomes.

show abstract

“…Patient-focused research can help identify priorities and outcomes that are important to patients and can enable the development of care components that can improve health care practice [ 4 - 6 ]. This information has also driven the development of tools that can promote self-management, which has been shown to slow disease progression, specifically in patients with CKD [ 5 , 7 ]. While qualitative studies have identified specific topics of importance to patients with respect to disease management [ 4 , 5 ], there is still an outstanding need for information directly from patients about their experience of symptoms and outcomes in CKD [ 8 - 10 ].…”

Section: Introductionmentioning

confidence: 99%

Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

James¹,

Nyman²,

Fitz-Randolph³

et al. 2020

J Med Internet Res

View full text Add to dashboard Cite

Background Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. Results The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. Conclusions This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

show abstract

Meeting patients where they are: improving outcomes in early chronic kidney disease with tailored self-management support (the CKD-SMS study)

Cited by 35 publications

References 61 publications

Outcomes of a 12-month patient-centred medical home model in improving patient activation and self-management behaviours among primary care patients presenting with chronic diseases in Sydney, Australia: A before-and-after study.

Outcomes of a 12-month patient-centred medical home model in improving patient activation and self-management behaviours among primary care patients presenting with chronic diseases in Sydney, Australia: A before-and-after study.

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

Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

Contact Info

Product

Resources

About