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

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          Abstract

          Background

          To achieve optimal health outcomes, people with chronic kidney disease must make changes in their everyday lives to self-manage their condition. This can be challenging, and there is a need for self-management support interventions which assist people to become successful self-managers. While interventions have been developed, the literature in this area is sparse and limited by lack of both individualisation and sound theoretical basis. The aim of this study was to implement and evaluate the Chronic Kidney Disease-Self-Management Support intervention: a theory-based, person-centred self-management intervention for people with chronic kidney disease stages 1–4.

          Methods

          A single-sample, pre-post study of an individualised, 12-week intervention based upon principles of social-cognitive theory and person-centred care was conducted with patients attending outpatient renal clinics in Queensland, Australia ( N = 66). Data were collected at T0 (pre-intervention) and T1 (post-intervention). Primary outcomes were self-efficacy and self-management behaviour.

          Results

          There were significant, small-to-medium improvements in primary outcomes (self-efficacy: mean difference + 0.8, 95% CI 0.3–1.2, d = 0.4; self-management behaviour: mean difference + 6.2, 95% CI 4.5–7.9, d = 0.8). There were further significant improvements in secondary outcomes (blood pressure, disease-specific knowledge, physical activity, fruit and vegetable consumption, alcohol consumption, health-related quality of life, psychological distress, and communication with healthcare providers), with effect sizes ranging from negligible to large (all ps < .05).

          Conclusions

          Social-cognitive theory shows promise as a framework for providing effective person-centred self-management support to patients within this population, and longer-term evaluation is needed.

          Trial registration

          Australian New Zealand Clinical Trials Registry ACTRN12618000066280. Retrospectively registered 17/01/2018.

          Electronic supplementary material

          The online version of this article (10.1186/s12882-018-1075-2) contains supplementary material, which is available to authorized users.

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          Most cited references41

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          Effect of a self-management program on patients with chronic disease.

          For patients with chronic disease, there is growing interest in "self-management" programs that emphasize the patients' central role in managing their illness. A recent randomized clinical trial demonstrated the potential of self-management to improve health status and reduce health care utilization in patients with chronic diseases. To evaluate outcomes of a chronic disease self-management program in a real-world" setting. Before-after cohort study. Of the 613 patients from various Kaiser Permanente hospitals and clinics recruited for the study, 489 had complete baseline and follow-up data. The Chronic Disease Self-Management Program is a 7-week, small-group intervention attended by people with different chronic conditions. It is taught largely by peer instructors from a highly structured manual. The program is based on self-efficacy theory and emphasizes problem solving, decision making, and confidence building. Health behavior, self-efficacy (confidence in ability to deal with health problems), health status, and health care utilization, assessed at baseline and at 12 months by self-administered questionnaires. At 1 year, participants in the program experienced statistically significant improvements in health behaviors (exercise, cognitive symptom management, and communication with physicians), self-efficacy, and health status (fatigue, shortness of breath, pain, role function, depression, and health distress) and had fewer visits to the emergency department (ED) (0.4 visits in the 6 months prior to baseline, compared with 0.3 in the 6 months prior to follow-up; P = 0.05). There were slightly fewer outpatient visits to physicians and fewer days in hospital, but the differences were not statistically significant. Results were of about the same magnitude as those observed in a previous randomized, controlled trial. Program costs were estimated to be about $200 per participant. We replicated the results of our previous clinical trial of a chronic disease self-management program in a "real-world" setting. One year after exposure to the program, most patients experienced statistically significant improvements in a variety of health outcomes and had fewer ED visits.
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            Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study.

            We evaluated the outcome of person-centred and integrated Palliative advanced home caRE and heart FailurE caRe (PREFER) with regard to patient symptoms, health-related quality of life (HQRL), and hospitalizations compared with usual care. From January 2011 to October 2012, 36 (26 males, 10 females, mean age 81.9 years) patients with chronic heart failure (NYHA class III-IV) were randomized to PREFER and 36 (25 males, 11 females, mean age 76.6 years) to the control group at a single centre. Prospective assessments were made at 1, 3, and 6 months using the Edmonton Symptom Assessment Scale, Euro Qol, Kansas City Cardiomyopathy Questionnaire, and rehospitalizations. Between-group analysis revealed that patients receiving PREFER had improved HRQL compared with controls (57.6 ± 19.2 vs. 48.5 ± 24.4, age-adjusted P-value = 0.05). Within-group analysis revealed a 26% improvement in the PREFER group for HRQL (P = 0.046) compared with 3% (P = 0.82) in the control group. Nausea was improved in the PREFER group (2.4 ± 2.7 vs. 1.7 ± 1.7, P = 0.02), and total symptom burden, self-efficacy, and quality of life improved by 18% (P = 0.035), 17% (P = 0.041), and 24% (P = 0.047), respectively. NYHA class improved in 11 of the 28 (39%) PREFER patients compared with 3 of the 29 (10%) control patients (P = 0.015). Fifteen rehospitalizations (103 days) occurred in the PREFER group, compared with 53 (305 days) in the control group. Person-centred care combined with active heart failure and palliative care at home has the potential to improve quality of life and morbidity substantially in patients with severe chronic heart failure. NCT01304381. © 2014 The Authors. European Journal of Heart Failure © 2014 European Society of Cardiology.
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              Symptom burden in chronic kidney disease: a review of recent literature.

              People living with chronic kidney disease (CKD) experience multiple symptoms due to both the disease and its treatment. However, these symptoms are often underrecognised. In addition, the majority of studies have focused on an individual symptom; however, these symptoms rarely occur in isolation and may instead occur in clusters.
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                Author and article information

                Contributors
                +617 3138 5957 , kathryn.havas@qut.edu.au
                c2.douglas@qut.edu.au
                ann.bonner@qut.edu.au
                Journal
                BMC Nephrol
                BMC Nephrol
                BMC Nephrology
                BioMed Central (London )
                1471-2369
                20 October 2018
                20 October 2018
                2018
                : 19
                : 279
                Affiliations
                [1 ]ISNI 0000000089150953, GRID grid.1024.7, School of Nursing, Queensland University of Technology, ; Victoria Park Rd, Kelvin Grove, Brisbane, QLD 4059 Australia
                [2 ]ISNI 0000 0000 9320 7537, GRID grid.1003.2, NHMRC Chronic Kidney Disease Centre for Research Excellence, , University of Queensland, ; St Lucia, Australia
                [3 ]Visiting Research Fellow, Kidney Health Service, Metro North Hospital and Health Service, Brisbane, Australia
                Author information
                http://orcid.org/0000-0002-6497-5830
                Article
                1075
                10.1186/s12882-018-1075-2
                6195997
                30342487
                f7bb8500-8ae5-4b77-b6f3-c8964b1592de
                © The Author(s). 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 3 October 2017
                : 5 October 2018
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Nephrology
                chronic kidney disease,self-management,self-care,person-centred care,patient-centred care,intervention,patient education

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