Mari Carmen Portillo

Diabetes self-management arrangements in Europe: a realist review to facilitate a project implemented in six countries

BackgroundSelf-management of long term conditions can promote quality of life whilst delivering benefits to the financing of health care systems. However, rarely are the meso-level influences, likely to be of direct relevance to these desired outcomes, systematically explored. No specific international guidelines exist suggesting the features of the most appropriate structure and organisation of health care systems within which to situate self-management approaches and practices. This review aimed to identify the quantitative literature with regard to diabetes self-management arrangements currently in place within the health care systems of six countries (The United Kingdom, The Netherlands, Norway, Spain, Bulgaria, and Greece) and explore how these are integrated into the broader health care and welfare systems in each country.MethodsThe methodology for a realist review was followed. Publications of interest dating from 2000 to 2013 were identified through appropriate MeSH terms by a systematic search in six bibliographic databases. A search diary was maintained and the studies were assessed for their quality and risk of bias.ResultsFollowing the multi-step search strategy, 56 studies were included in the final review (the majority from the UK) reporting design methods and findings on 21 interventions and programmes for diabetes and chronic disease self-management. Most (11/21, 52%) of the interventions were designed to fit within the context of primary care. The majority (11/21, 52%) highlighted behavioural change as an important goal. Finally, some (5/21, 24%) referred explicitly to Internet-based tools.ConclusionsThis review is based on results which are derived from a total of at least 5,500 individuals residing in the six participating countries. It indicates a policy shift towards patient-centred self-management of diabetes in a primary care context. The professional role of diabetes specialist nurses, the need for multidisciplinary approaches and a focus on patient education emerge as fundamental principles in the design of relevant programmes. Socio-economic circumstances are relevant to the capacity to self-manage and suggest that any gains and progress will be hard to maintain during economic austerity. This realist review should be interpreted within the wider context of a whole systems approach regarding self-care support and chronic illness management.

Voluntary Organizations and Community Groups as New Partners in Diabetes Self-management and Education: A Critical Interpretative Synthesis

Purpose The purpose of this study is to critically review the literature on the role and work of voluntary organizations and community groups and volunteers in diabetes self-management programs. It seeks to explain how these organizations are located and could be integrated further within a broader system of support. Methods A critical interpretative synthesis of the literature was undertaken as part of the conceptual development of a European research project. Evidence (2000-November 2014) was searched in databases, with the use of key terms, and limited to the languages of the participating countries. This was supplemented by an additional hand search and snowballing technique. A total of 21 articles were included in the review. Results Evidence regarding the involvement of voluntary organizations in diabetes self-management programs mainly related to: the nature and remit of their work, responsibilities, and attributes; key strategies of programs accounting for success; motivations/barriers for engaging in volunteering participation; relationships between volunteers and users; and connections/tensions with formal services. Conclusions This review has uncovered a range of facets of voluntary organizations and community groups relevant for supporting diabetes self-management such as the context within which they act and the nature of relationships developed with community and health services. The principles of “assistance, support, sharing, and link” seem essential for this voluntary initiative in self-management to establish effective reciprocal collaboration with health professionals.

Social support systems as determinants of self-management and quality of life of people with diabetes across Europe: study protocol for an observational study

BackgroundLong-term conditions pose major challenges for healthcare systems. Optimizing self-management of people with long-term conditions is an important strategy to improve quality of life, health outcomes, patient experiences in healthcare, and the sustainability of healthcare systems. Much research on self-management focuses on individual competencies, while the social systems of support that facilitate self-management are underexplored. The presented study aims to explore the role of social systems of support for self-management and quality of life, focusing on the social networks of people with diabetes and community organisations that serve them.MethodsThe protocol concerns a cross-sectional study in 18 geographic areas in six European countries, involving a total of 1800 individuals with diabetes and 900 representatives of community organisations. In each country, we include a deprived rural area, a deprived urban area, and an affluent urban area. Individuals are recruited through healthcare practices in the targeted areas. A patient questionnaire comprises measures for quality of life, self-management behaviours, social network and social support, as well as individual characteristics. A community organisations’ survey maps out interconnections between community and voluntary organisations that support patients with chronic illness and documents the scope of work of the different types of organisations. We first explore the structure of social networks of individuals and of community organisations. Then linkages between these social networks, self-management and quality of life will be examined, taking deprivation and other factors into account.DiscussionThis study will provide insight into determinants of self-management and quality of life in individuals with diabetes, focusing on the role of social networks and community organisations.

Dynamics and nature of support in the personal networks of people with type 2 diabetes living in Europe: qualitative analysis of network properties

Living with and self‐managing a long‐term condition implicates a diversity of networked relationships. This qualitative study examines the personal communities of support of people with type 2 diabetes.

Satisfaction with life scale (SLS-6): first validation study in Parkinson's disease population

INTRODUCTION To explore the psychometric attributes of a new Satisfaction with Life Scale (SLS-6) in a wide Spanish-speaking population with Parkinsons disease (PD). METHODS This was an international, cross-sectional study. Several rater-based and patient-reported outcomes measures for evaluation of PD (e.g., Scales for Outcomes in Parkinsons Disease-Motor) and other constructs (e.g., Duke-UNC Functional Social Support Questionnaire, Scale for Living with Chronic Illness) were applied together with the SLS-6. Acceptability, scaling assumptions, reliability, precision, and construct validity were tested. RESULTS The study included 324 patients from five countries, with age (mean ± standard deviation) 66.67 ± 10.68 years. None of the SLS-6 items had missing values and all acceptability parameters fulfilled the standard criteria. Scaling assumptions allowed the calculation of a summary index from items 2 to 6, complementary to the global evaluation (item 1). For these five items, Cronbachs alpha was 0.85; the corrected item-total correlation 0.53-0.73; inter-item correlation, 0.45-0.70, with an item homogeneity index of 0.55. The standard error of measurement, based on Cronbachs alpha for a single observation, was 3.48. SLS-6 correlations were moderate to strong (rs ≥ 0.35) with the patient-reported outcomes and weak to moderate with the rater-based assessments used in the study. The SLS-6 total score was significantly different according to PD severity levels established according to Hoehn and Yahr staging, Clinical Impression of Severity Index, and Patient-Based Global Impression of Severity scale. CONCLUSION The results suggest that SLS-6 is an easy, feasible, acceptable, consistent, precise and valid measure to evaluate satisfaction with life in PD patients.

Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers

ObjectiveThe influence that social conditions and personal attitudes may have on the quality of life (QoL) of Parkinson’s disease (PD) patients and informal caregivers does not receive enough attention in health care, as a result of it not being clearly identified, especially in informal caregivers. The aim of this study was to provide a comprehensive analysis of psychosocial adjustment and QoL determinants in PD patients and informal caregivers.MethodsNinety-one PD patients and 83 caregivers participated in the study. Multiple regression analyses were performed including benefit finding, coping, disease severity and socio-demographic factors, in order to determine how these aspects influence the psychosocial adjustment and QoL in PD patients and caregivers.ResultsRegression models showed that severity of PD was the main predictor of psychosocial adjustment and QoL in patients. Nevertheless, multiple regression analyses also revealed that coping was a significant predictor of psychosocial adjustment in patients and caregivers. Furthermore, psychosocial adjustment was significantly related to QoL in patients and caregivers. Also, coping and benefit finding were predictors of QoL in caregivers but not in patients.ConclusionsMultidisciplinary interventions aimed at improving PD patients’ QoL may have more effective outcomes if education about coping skills, and how these can help towards a positive psychosocial adjustment to illness, were included, and targeted not only at patients, but also at informal caregivers.

Elementos clave en el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares cuidadores

Background. Parkinson’s disease has a considerable impact on people’s lives. It is necessary to identify the key elements that influence the process of living with Parkinson’s disease so that health professionals can help patients and their relatives to live as well as possible with the changes and limitations produced by the disease. Material and methods. A qualitative descriptive study was realized. This study corresponded to the first phase of a sequential, exploratory design (mixed method) that in turn included a quantitative phase. A multicentre project was carried out. Convenience sampling was applied to collect data, a semi-structured interview was realized individually with patients and carer-relatives and two questionnaires with patients: the Hoehn & Yahr scale and the PDNMS questionnaire. Content analysis of the interviews and a statistical description of the questionnaires were used. Results. The sample was made up of 46 participants. Three key elements were identified in the process of living with Parkinson’s disease: acceptance, adaptation and self-management. These elements conditioned the modes of living with Parkinson’s disease: positive living, characterized by feelings of harmony, balance and naturalness; negative living characterized be feelings of frustration, loss of control and self-esteem. Conclusions. It is essential for health professionals to have a deep understanding of these elements, as well as of the factors that favor or hinder them. To the extent that research in this field progresses and effective interventions are identified, comprehensive patient care will be improved in consonance with the new directives for chronicity.BACKGROUND Parkinsons disease has a considerable impact on peoples lives. It is necessary to identify the key elements that influence the process of living with Parkinsons disease so that health professionals can help patients and their relatives to live as well as possible with the changes and limitations produced by the disease. MATERIAL AND METHODS A qualitative descriptive study was realized. This study corresponded to the first phase of a sequential, exploratory design (mixed method) that in turn included a quantitative phase. A multicentre project was carried out. Convenience sampling was applied to collect data, a semi-structured interview was realized individually with patients and carer-relatives and two questionnaires with patients: the Hoehn & Yahr scale and the PDNMS questionnaire. Content analysis of the interviews and a statistical description of the questionnaires were used. RESULTS The sample was made up of 46 participants. Three key elements were identified in the process of living with Parkinsons disease: acceptance, adaptation and self-management. These elements conditioned the modes of living with Parkinsons disease: positive living, characterized by feelings of harmony, balance and naturalness; negative living characterized be feelings of frustration, loss of control and self-esteem. CONCLUSIONS It is essential for health professionals to have a deep understanding of these elements, as well as of the factors that favor or hinder them. To the extent that research in this field progresses and effective interventions are identified, comprehensive patient care will be improved in consonance with the new directives for chronicity.

El automanejo de los pacientes con diabetes tipo 2: una revisión narrativa

According to the World Health Organization in 2030 the number of people with diabetes mellitus will reach 366 millions in the whole world, having the diabetes mellitus type 2 the highest prevalence. The current National Chronicity and Diabetes Strategies advocate patients’ selfmanagement programmes and / or interventions. Nevertheless, the lack of knowledge and inadequate attitudes hinder the associative relationship between patients and professionals that is required in these programmes. This literature review aims to show the outstanding needs that type 2 diabetes mellitus patients have when it comes to managing the illness. Thus, results from this literature review could set the bases for the development of future effective programmes, helping professionals approach patients’ needs.

Living with chronic illness scale: international validation of a new self-report measure in Parkinson’s disease

Understanding how a person lives with a chronic illness, such as Parkinson’s disease (PD), is necessary to provide individualized care and professionals role in person-centered care at clinical and community levels is paramount. The present study was aimed to analyze the psychometric properties of the Living with Chronic Illness-PD Scale (EC-PC) in a wide Spanish-speaking population with PD. International cross-sectional study with retest was carried out with 324 patients from four Latin American countries and Spain. Feasibility, acceptability, scaling assumptions, reliability, precision, and construct validity were tested. The study included 324 patients, with age (mean±s.d.) 66.67±10.68 years. None of the EC-PC items had missing values and all acceptability parameters fulfilled the standard criteria. Around two-third of the items (61.54%) met scaling assumptions standards. Concerning internal consistency, Cronbach’s alpha values were 0.68–0.88; item-total correlation was >0.30, except for two items; item homogeneity index was >0.30, and inter-item correlation values 0.14–0.76. Intraclass correlation coefficient for EC-PC stability was 0.76 and standard error of measurement (s.e.m.) for precision was 8.60 (for a EC-PC s.d.=18.57). EC-PC presented strong correlation with social support (rS=0.61) and moderate correlation with life satisfaction (rS=0.46). Weak and negligible correlations were found with the other scales. Internal validity correlations ranged from 0.46 to 0.78. EC-PC total scores were significantly different for each severity level based on Hoehn and Yahr and Clinical Impression of Severity Index, but not for Patient Global Impression of Severity. The EC-PC has satisfactory acceptability, reliability, precision, and validity to evaluate living with PD.

Interventions and working relationships of voluntary organisations for diabetes self-management: a cross-national study

Background Diabetes has become a challenging health priority globally. Given the tensions of financially burdened health systems in Europe the mobilisation of community resources like voluntary organisations and community groups is seen as a health policy strategy to sustain the management of long-term conditions like diabetes. However, little is known about how this is happening in practice in Europe. Objectives To explore diabetes self-management interventions undertaken or promoted by voluntary organisations and community groups in Europe; and describe the types of working relationships between these organisations, European health systems and users when implementing diabetes self-management programmes in different areas. Design A mixed method study (survey/qualitative interviews) was undertaken. This research formed part of a European project (7th Framework programme of the European Commission) exploring the link between resources, like community organisations, and peoples’ capacities to manage long-term conditions. Settings Six European countries (Bulgaria, Greece, Norway, Spain, the Netherlands and the United Kingdom) participated in the study. Three areas: deprived urban area, a relatively affluent urban area and a deprived rural area were purposefully selected. Participants Through a purposeful sample and bottom up strategies 749 representatives of voluntary organisations and community groups were recruited from the geographical areas above. Organisations with at least three members, existing for at least one year that could provide information or other type of support directly or indirectly relevant to patients with diabetes were included. Methods Participants completed a 15 item questionnaire for the survey (n = 749) and a voice recorded semi structured interview (n = 300). Data collection focused on the type of activities and roles developed to promote health, and relationships and communication channels between organisations, health services and users. Descriptive and comparative statistical and qualitative content analyses were used. Results Participants perceived they had better reach of people with health needs than health providers, filled the administration gaps left in their capacity to deal with basic diabetes practical needs, humanized care, and acted as mediators between services and communities. There were significant differences between countries in relation to the types of activities (p-value < 0.001), roles (p-value < 0.001) and funding sources (p-value < 0.001) of organisations concerning diabetes self-management. In non-affluent countries organisations tend to promote social activities twice more often. Conclusions Community and voluntary organisations provide complimentary and on-going support in diabetes management. This involves a shift from focusing on the illness to also longing for social cohesion, sense of community and wellbeing in diabetes health practices and policies.