Structured Self-management Education Research Articles

Using Normalisation Process Theory (NPT) to develop an intervention to improve referral and uptake rates for self-management education for patients with type 2 diabetes in UK primary care

BackgroundReferral and uptake rates of structured self-management education (SSME) for Type 2 diabetes (T2DM) in the UK are variable and relatively low. Research has documented contributing factors at patient, practitioner and organisational levels. We report a project to develop an intervention to improve referral to and uptake of SSME, involving an integrative synthesis of existing datasets and stakeholder consultation and using Normalisation Process Theory (NPT) as a flexible framework to inform the development process.MethodsA three-phase mixed-methods development process involved: (1) synthesis of existing evidence; (2) stakeholder consultation; and (3) intervention design. The first phase included a secondary analysis of data from existing studies of T2DM SSME programmes and a systematic review of the literature on application of NPT in primary care. Influences on referral and uptake of diabetes SSME were identified, along with insights into implementation processes, using NPT constructs to inform analysis. This gave rise to desirable attributes for an intervention to improve uptake of SSME. The second phase involved engaging with stakeholders to prioritise and then rank these attributes, and develop a list of associated resources needed for delivery. The third phase addressed intervention design. It involved translating the ranked attributes into essential components of a complex intervention, and then further refinement of components and associated resources.ResultsIn phase 1, synthesised analysis of 64 transcripts and 23 articles generated a longlist of 46 attributes of an embedded SSME, mapped into four overarching domains: valued, integrated, permeable and effectively delivered. Stakeholder engagement in phase 2 progressed this to a priority ranked list of 11. In phase 3, four essential components attending to the prioritised attributes and forming the basis of the intervention were identified: 1) a clear marketing strategy for SSME; 2) a user friendly and effective referral pathway; 3) new/amended professional roles; and 4) a toolkit of resources.ConclusionsNPT provides a flexible framework for synthesising evidence for the purpose of developing a complex intervention designed to increase and reduce variation in uptake to SSME programmes in primary care settings.

Occupational Therapy-Based Energy Management Education in People with Post-COVID-19 Condition-Related Fatigue: Results from a Focus Group Discussion.

Persons with post-COVID-19 conditions have prolonged symptoms and longer-term consequences which can prevent them from returning to previous everyday functioning. Fatigue is the most frequent symptom reported in literature. Occupational therapists (OTs) are specialized in client-centered problem analysis, counseling, and education to recover occupational engagement and performance in everyday life. Since the beginning of the COVID-19 pandemic, OTs have been challenged to respond with services adequate to the needs of this patient group. Energy management education (EME) was initially developed for persons with multiple sclerosis-related fatigue and then made independent of diagnosis suitable to persons living with chronic disease-related fatigue. EME, a structured self-management education, is becoming a part of the new services. This study was aimed at exploring the initial experiences of OTs using the EME protocol and materials with persons with postacute COVID-19 and/or post-COVID-19 condition-related fatigue and gathering their recommendations for improvements and adaptions. One online focus group discussion took place in May 2021 with OTs experienced in using the EME protocol. The topics addressed were the institutional context of the OTs and their experiences during the treatment. A thematic analysis was performed. According to nine OTs working in different settings in Switzerland, the EME protocol is exploitable in both in- and outpatient settings and was judged appropriate by them, even if the EME materials can be improved. The main challenges for the OTs were the short period their patients had lived with fatigue; the discrepancy between self-concept, self-perception, and performance; and the insecurity, fear, and anxiety related to recovery. Further research is needed to include the perspective of EME participants and to measure quantitative outcomes such as fatigue impact, self-efficacy, occupational performance, and quality of life. Until the existing EME protocol is improved, it is applicable to persons with post-COVID-19 condition-related fatigue.

Structured Care and Self-Management Education for Persons with Parkinson's Disease: Why the First Does Not Go without the Second-Systematic Review, Experiences and Implementation Concepts from Sweden and Germany.

Integrated care is regarded as a key for care delivery to persons with chronic long-term conditions such as Parkinson’s disease. For persons with Parkinson’s disease, obtaining self-management support is a top priority in the context of integrated care. Self-management is regarded as a crucial competence in chronic diseases since the affected persons and their caregivers inevitably take up the main responsibility when it comes to day-to-day management. Formal self-management education programs with the focus on behavioral skills relevant to the induction and maintenance of behavioral change have been implemented as a standard in many chronic long-term conditions. However, besides the example of the Swedish National Parkinson School, the offers for persons with Parkinson’s disease remain fragmented and limited in availability. Today, no such program is implemented as a nationwide standard in Germany. This paper provides (1) a systematic review on structured self-management education programs specifically designed or adopted for persons with Parkinson’s disease, (2) presents the Swedish National Parkinson School as an example for a successfully implemented nationwide program and (3) presents a concept for the design, evaluation and long-term implementation of a future-orientated self-management education program for persons with Parkinson’s disease in Germany.

Increasing uptake of structured self-management education programmes for type 2 diabetes in a primary care setting: a feasibility study

BackgroundStructured self-management education (SSME) for people with type 2 diabetes mellitus (T2DM) improves biomedical and psychological outcomes, whilst being cost-effective. Yet uptake in the UK remains low. An ‘Embedding Package’ addressing barriers and enablers to uptake at patient, health care professional and organisational levels has been developed. The aim of this study was to test the feasibility of conducting a subsequent randomised controlled trial (RCT) to evaluate the Embedding Package in primary care, using a mixed methods approach.MethodsA concurrent mixed methods approach was adopted. Six general practices in the UK were recruited and received the intervention (the Embedding Package). Pseudonymised demographic, biomedical and SSME data were extracted from primary care medical records for patients recorded as having a diagnosis of T2DM. Descriptive statistics assessed quantitative data completeness and accuracy. Quantitative data were supplemented and validated by a patient questionnaire, for which two recruitment methods were trialled. Where consent was given, the questionnaire and primary care data were linked and compared. The cost of the intervention was estimated. An integrated qualitative study comprising ethnography and stakeholder and patient interviews explored the process of implementation, sustainability of change and ‘fit’ of the intervention. Qualitative data were analysed using a thematic framework guided by the Normalisation Process Theory (NPT).ResultsPrimary care data were extracted for 2877 patients. The primary outcome for the RCT, HbA1c, was over 90% complete. Questionnaires were received from 423 (14.7%) participants, with postal invitations yielding more participants than general practitioner (GP) prompts. Ninety-one percent of questionnaire participants consented to data linkage. The mean cost per patient for the Embedding Package was £8.94, over a median follow-up of 162.5 days. Removing the development cost, this reduces to £5.47 per patient. Adoption of ethnographic and interview methods in the collection of data was appropriate, and the use of NPT, whilst challenging, enhanced the understanding of the implementation process. The need to delay the collection of patient interview data to enable the intervention to inform patient care was highlighted.ConclusionsIt is feasible to collect data with reasonable completeness and accuracy for the subsequent RCT, although refinement to improve the quality of the data collected will be undertaken. Based on resource use data collected, it was feasible to produce cost estimates for each individual component of the Embedding Package. The methods chosen to generate, collect and analyse qualitative data were satisfactory, keeping participant burden low and providing insight into potential refinements of the Embedding Package and customisation of the methods for the RCT.Trial registrationISRCTN, ISRCTN21321635, Registered 07/07/2017—retrospectively registered.

The impact of an intervention to increase uptake to structured self-management education for people with type 2 diabetes mellitus in primary care (the embedding package), compared to usual care, on glycaemic control: study protocol for a mixed methods study incorporating a wait-list cluster randomised controlled trial

BackgroundApproximately 425 million people globally have diabetes, with ~ 90% of these having Type 2 Diabetes Mellitus (T2DM). This is a condition that leads to a poor quality of life and increased risk of serious health complications. Structured self-management education (SSME) has been shown to be effective in improving glycaemic control and patient related outcome measures and to be cost-effective. However, despite the demonstrated benefits, attendance at SSME remains low. An intervention has been developed to embed SSME called the ‘Embedding Package’. The intervention aims to address barriers and enhance enablers to uptake of SSME at patient, healthcare professional and organisational levels. It comprises a marketing strategy, user friendly and effective referral pathways, new roles to champion SSME and a toolkit of resources.MethodsA mixed methods study incorporating a wait-list cluster randomised trial and ethnographic study, including 66 UK general practices, will be conducted with two intervention start times (at 0 and 9 months), each followed by an active delivery phase. At 18 months, the intervention will cease to be actively delivered and a 12 month observational follow-up phase will begin. The intervention, the Embedding Package, aims to increase SSME uptake and subsequent improvements in health outcomes, through a clear marketing strategy, user friendly and effective referral pathways, a local clinical champion and an ‘Embedder’ and a toolkit of resources for patients, healthcare professionals and other key stakeholders.The primary aim is, through increasing uptake to and attendance at SSME, to reduce HbA1c in people with T2DM compared with usual care. Secondary objectives include: assessing whether there is an increase in referral to and uptake of SSME and improvements in biomedical and psychosocial outcomes; an assessment of the sustainability of the Embedding Package; contextualising the process of implementation, sustainability of change and the ‘fit’ of the Embedding Package; and an assessment of the cost-effectiveness of the Embedding Package.DiscussionThis study will assess the effectiveness, cost-effectiveness and sustainability of the Embedding Package, an intervention which aims to improve biomedical and psychosocial outcomes of people with T2DM, through increased referral to and uptake of SSME.Trial registrationInternational Standard Randomised Controlled Trials Number ISRCTN23474120. Assigned 05/04/2018. The study was prospectively registered. On submission of this manuscript practice recruitment is complete, participant recruitment is ongoing and expected to be completed by the end of 2019.

Exploring organizational support for the provision of structured self-management education for people with Type 2 diabetes: findings from a qualitative study.

To explore the organizational context in which Type 2 diabetes structured group education is provided. Four Clinical Commissioning Groups in England providing Type 2 diabetes structured self-management education participated in a qualitative study exploring the context for provision of that education. Using UK National Diabetes Audit returns, two Clinical Commissioning Groups were selected that had non-attendance rates of ≤25%, and two that had non-attendance rates of ≥50%. Between May 2016 and August 2017, 20 interviews were conducted with Clinical Commissioning Group staff including: commissioners, healthcare professionals, managers, general practitioners and diabetes educators. Data gathering was prolonged as it proved challenging to engage with healthcare staff as a result of frequent local restructuring and service disruption. Local audits revealed discrepancies in basic data such as referral and attendance numbers compared with national audit data. There was a commonality in the themes identified from interviews: diabetes education was rarely embedded in service structure; where education uptake was poor, a lack of central support to delivery teams was noticeable; and where education uptake was positive, delivery teams were actively engaged, sometimes relying on enthusiastic individuals. Both situations put the local sustainability of diabetes education at risk. There appears to be a link between attendance rates and organizational issues, therefore, when considering how to increase attendance rates, the state of the diabetes education infrastructure should be reviewed. Good uptake of diabetes education can be too reliant on the enthusiastic commitment of small teams or individuals delivering the education.

Jane Speight: tackling diabetes and its stigma Down Under

Jane Speight is not fond of the label “diabetic”—she feels that calling people by their medical condition contributes to stigma. Australia has a growing number of people who, to her chagrin, might be labelled as diabetics. Out of a total population of about 24·5 million, Australia has more than 1·25 million people with diagnosed diabetes, including about 1·1 million with type 2 diabetes (about 500 000 more are estimated to have undiagnosed type 2 diabetes). Speight has called for increased research investment—particularly regarding behavioural and psychological research—from the Government. Since May, 2010, she has served as the Foundation Director of the Australian Centre for Behavioural Research in Diabetes (ACBRD), which is a partnership between Diabetes Victoria (a charitable organisation) and Deakin University (Geelong, VIC), where Speight holds the Chair in Behavioural and Social Research in Diabetes. She emphasises that the ACBRD serves not only as a research centre, but also as a national resource and a national voice; indeed it is becoming an increasingly international voice. Diabetes structured self-management education programmes: a narrative review and current innovationsBoth type 1 and type 2 diabetes are associated with long-term complications that can be prevented or delayed by intensive glycaemic management. People who are empowered and skilled to self-manage their diabetes have improved health outcomes. Over the past 20 years, diabetes self-management education programmes have been shown to be efficacious and cost-effective in promotion and facilitation of self-management, with improvements in patients' knowledge, skills, and motivation leading to improved biomedical, behavioural, and psychosocial outcomes. Full-Text PDF Distal technologies and type 1 diabetes managementType 1 diabetes requires intensive self-management to avoid acute and long-term health complications. In the past two decades, substantial advances in technology have enabled more effective and convenient self-management of type 1 diabetes. Although proximal technologies (eg, insulin pumps, continuous glucose monitors, closed-loop and artificial pancreas systems) have been the subject of frequent systematic and narrative reviews, distal technologies have received scant attention. Distal technologies refer to electronic systems designed to provide a service remotely and include heterogeneous systems such as telehealth, mobile health applications, game-based support, social platforms, and patient portals. Full-Text PDF

The Bermuda triangle of diabetes

Achieving better patient outcomes is something that often eludes us. We sail together with our patients through the rough seas of diabetes and its complications. As in the Bermuda triangle, both patient and health care professional can get lost at times; however, this process of being lost and finding our way back again can provide us with valuable lessons to become better at what we do and thus improve outcomes for the person with diabetes. This paper addresses the key elements of effective treatments for diabetes, the qualities needed to be a clinical champion, and the components needed to deliver high quality care. The paper delves into issues around leadership, passion and vision. It also addresses effective service delivery models, structured self-management education and health care professional training. Copyright © 2014 John Wiley & Sons. Practical Diabetes 2014; 31(7): 298 ‐303

Effects of self-management education on quality of life of patients with chronic obstructive pulmonary disease

PurposeTo explore the effects of self-management education on the quality of life of patients living with chronic obstructive pulmonary disease (COPD). MethodsEighty-four stable or discharged COPD subjects were recruited from April 2011 to January 2012 following treatment at Beijing Hospital or Peking Union Medical College Hospital. Subjects were divided into an intervention group who underwent self-management education or a control group who received usual care without additional education (n = 42 each). The St George's Respiratory Questionnaire (SGRQ) was used to measure quality of life at three and six months. ResultsSGRQ impact domain scores revealed significant differences between the groups (t = −2.167, p < 0.05) at three months. SGRQ symptom, impact, activity domain and total scores revealed significant differences between groups (t = −3.482 to −2.530, p < 0.05) at six months. ConclusionA nurse-led, simple, structured self-management education program provided an effective method for the management of patients with COPD.

The Reversal Intervention for Metabolic Syndrome (TRIMS) study: rationale, design, and baseline data.

BackgroundRecent attention has focused on strategies to combat the forecast epidemic of type-2 diabetes (T2DM) and its major vascular sequelae. Metabolic syndrome (MetS) comprises a constellation of factors that increase the risk of cardiovascular disease (CVD) and T2DM. Our study aims to develop a structured self-management education programme for people with MetS, which includes management of cardiovascular and diabetes risk factors, and to determine its impact. This paper describes the rationale and design of the TRIMS study, including intervention development, and presents baseline data.MethodsSubjects recruited from a mixed-ethnic population with MetS were randomised to intervention or control arms. The intervention arm received structured group education based on robust psychological theories and current evidence. The control group received routine care. Follow-up data will be collected at 6 and 12 months. The primary outcome measure will be reversal of metabolic syndrome in the intervention group subjects compared to controls at 12 months follow-up.Results82 participants (44% male, 22% South Asian) were recruited between November 2009 and July 2010. Baseline characteristics were similar for both the intervention (n = 42) and control groups (n = 40). Median age was 63 years (IQR 57 - 67), mean waist size 106 cm (SD ± 11), and prescribing of statins and anti-hypertensives was 51% in each case.ConclusionResults will provide information on changes in diabetes and CVD risk factors and help to inform primary prevention strategies in people with MetS from varied ethnic backgrounds who are at high risk of developing T2DM and CVD. Information gathered in relation to the programme's acceptability and effectiveness in a multi-ethnic population would ensure that our results are widely applicable.Trial registrationThe study is registered at ClinicalTrials.gov, study identifier: NCT01043770.

How can structured self‐management patient education improve outcomes in people with type 2 diabetes?

Type 2 diabetes (T2DM) is a long-term chronic condition that is complex to manage, with the majority of management being done by the person with diabetes outside of the clinical setting. Because of its complexities, effective self-management requires skills, confidence and the ability to make decisions and choices about treatments and lifestyle on a day-to-day basis. Equipping a person with these self-management skills is in itself challenging and it is now widely accepted that structured education is an integral part of the management of T2DM. This paper explores whether structured self-management education can improve outcomes in people with diabetes. The authors explore what self-management education is, why it is needed and then go on to examine the recent evidence from clinical trials from 2006 onwards.

Introducing structured self-management education for patients with type 2 diabetes in primary care in Belgium: A feasibility study

Aims: People with diabetes have a pivotal role in the management of their illness and should be supported to adopt that role. In a mainly curative, symptom driven health care system, managing a chronic disease with the patient as empowered caretaker is challenging. Recently, the Belgian government commissioned a feasibility study aimed to create and evaluate a regional structured education programme for primary care type 2 diabetes patients within a comprehensive shared care intervention at community level.

Diabetes education and self-management for ongoing and newly diagnosed (DESMOND): Process modelling of pilot study

Objective To determine the effects of a structured education program on illness beliefs, quality of life and physical activity in people newly diagnosed with Type 2 diabetes. Methods Individuals attending a diabetes education and self-management for ongoing and newly diagnosed (DESMOND) program in 12 Primary Care Trusts completed questionnaire booklets assessing illness beliefs and quality of life at baseline and 3-month follow-up, metabolic control being assessed through assay of HbA1c. Results Two hundred and thirty-six individuals attended the structured self-management education sessions, with 97% and 64% completing baseline and 3-month follow-up questionnaires. At 3 months, individuals were more likely to: understand their diabetes; agree it is a chronic illness; agree it is a serious condition, and that they can affect its course. Individuals achieving a greater reduction in HbA1c over the first 3 months were more likely to agree they could control their diabetes at 3 months ( r = 0.24; p = 0.05), and less likely to agree that diabetes would have a major impact on their day to day life ( r = 0.35; p = 0.006). Conclusion Pilot data indicate the DESMOND program for individuals newly diagnosed with Type 2 diabetes changes key illness beliefs and that these changes predict quality of life and metabolic control at 3-month follow-up. Practice implications Newly diagnosed individuals are open to attending self-management programs and, if the program is theoretically driven, can successfully engage with the true, serious nature of diabetes.