Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden

Borg, Sixten; Palaszewski, Bo; Gerdtham, Ulf G.; Ødegaard, Fredrik; Roos, Pontus; Guðbjörnsdóttir, Soffia

doi:10.3390/ijerph111212223

Cited by 17 publications

(17 citation statements)

References 44 publications

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“…European models of national registries highlight the potential of creating a learning network of clinical sites to improve the care delivery and clinical outcomes for diabetes patients [13, 94]. Effective teamwork and coordination of care through understanding of roles, integration of services, and appropriate use of multidisciplinary resources are all critical to operate beneficially for patients and families.…”

Section: Discussionmentioning

confidence: 99%

New Approaches to Providing Individualized Diabetes Care in the 21st Century

Powell

Corathers²,

Raymond³

et al. 2015

CDR

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Building from a foundation of rapid innovation, the 21st century is poised to offer considerable new approaches to providing modern diabetes care. The focus of this paper is the evolving role of diabetes care providers collaboratively working with patients and families toward the goals of achieving optimal clinical and psychosocial outcomes for individuals living with diabetes. Advances in monitoring, treatment and technology have been complemented by trends toward patient-centered care with expertise from multiple health care disciplines. The evolving clinical care delivery system extends far beyond adjustment of insulin regimens. Effective integration of patient-centered strategies, such as shared-decision making, motivational interviewing techniques, shared medical appointments, and multidisciplinary team collaboration, into a dynamic model of diabetes care delivery holds promise in reaching glycemic targets and improving patients’ quality of life.

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Section: Discussionmentioning

confidence: 99%

New Approaches to Providing Individualized Diabetes Care in the 21st Century

Powell

Corathers²,

Raymond³

et al. 2015

CDR

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“…Swedish National Diabetes Register (NDR) has therefore been to broaden healthcare provider perspectives and enable a systematic collection of adults' perspectives of living with diabetes and their experiences of whether they are offered adequate support from diabetes care. [7][8][9][10] The newly developed Diabetes Questionnaire is intended to support meetings with individuals and provide a means for quality improvement at the local, regional and national levels. [7][8][9] The Diabetes Questionnaire was developed from interviews with adults with type 1 or type 2 diabetes that identified a broad range of aspects important to the target group, such as well-being, impact on daily life, capabilities to manage diabetes and support from diabetes care.…”

Section: Open Accessmentioning

confidence: 99%

New Diabetes Questionnaire to add patients’ perspectives to diabetes care for adults with type 1 and type 2 diabetes: nationwide cross-sectional study of construct validity assessing associations with generic health-related quality of life and clinical variables

et al. 2020

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ObjectivesTo study evidence for construct validity, the aim was to describe the outcome from the recently developed Diabetes Questionnaire, assess the associations of that outcome with clinical variables and generic health-related quality of life, and study the sensitivity to differences between clinically relevant groups of glycaemic control in adults with type 1 and type 2 diabetes in a nation-wide setting.DesignCross-sectional survey.SettingSwedish diabetes care clinics connected to the National Diabetes Register (NDR).ParticipantsAmong 2479 adults with type 1 diabetes and 2469 with type 2 diabetes selected at random from the NDR, 1373 (55.4%) with type 1 and 1353 (54.8%) with type 2 diabetes chose to participate.Outcome measuresThe Diabetes Questionnaire, the generic 36-item Short Form version 2 (SF-36v2) health survey and clinical variables.ResultsRelated to the prespecified assumptions, supporting evidence for construct validity for the Diabetes Questionnaire was found. Supporting divergent validity, the statistically significant correlations with the clinical variables were few and weak. In relation to the SF-36v2 and in support of convergent validity, the strongest correlations were seen in the Diabetes Questionnaire scales General Well-being and Mood and Energy. In those scales, machine learning analyses showed that about 40%–45% of the variance was explained by the SF-36v2 results and clinical variables. In multiple regression analyses among three groups with differing levels of glycated haemoglobin adjusted for demographics, other risk factors, and diabetes complications, the high-risk group had, in support of sensitivity to clinically relevant groups, statistically significant lower scores than the well-controlled group in most Diabetes Questionnaire scales.ConclusionsThis nation-wide study shows that the Diabetes Questionnaire captures some generic health-related quality-of-life dimensions, in addition to adding diabetes-specific information not covered by the SF-36v2 and clinical variables. The Diabetes Questionnaire is also sensitive to differences between clinically relevant groups of glycaemic control.

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“…Patient-reported experience measures (PREM) are patients' judgements of their experience of diabetes care. PROM and PREM are important determinants of health-related quality of life and patient preferences, thus key complements to the risk factors 7. The ability to manage diabetes is fundamental, as is the capacity for activities of daily living and the absence of significant limitations.…”

Section: Introductionmentioning

confidence: 99%

Patient-reported outcome and experience measures for diabetes: development of scale models, differences between patient groups and relationships with cardiovascular and diabetes complication risk factors, in a combined registry and survey study in Sweden

Borg

Eeg‐Olofsson

Palaszewski³

et al. 2019

BMJ Open

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PurposeThe Swedish National Diabetes Register (NDR) has developed a diabetes-specific questionnaire to collect information on individuals' management of their diabetes, collaboration with healthcare providers and the disease’s impact on daily life. Our main objective was to develop measures of well-being, abilities to manage diabetes and judgements of diabetes care, and to detect and quantify differences using the NDR questionnaire.Design, setting and participantsThe questionnaire was analysed with using responses from 3689 participants with type 1 and 2 diabetes, randomly sampled from the NDR population, combined with register data on patient characteristics and cardiovascular and diabetes complication risk factors.MethodsWe used item response theory to develop scales for measuring well-being, abilities to manage diabetes and judgements of diabetes care (scores). Test–retest reliability on the scale level was analysed with intraclass correlation. Associations between scores and risk factor levels were investigated with subgroup analyses and correlations.ResultsWe obtained scales with satisfactory measurement properties, covering patient reported outcome measures such as general well-being and being free of worries, and patient reported experience measure, for example, access and continuity in diabetes care. All scales had acceptable test–retest reliability and could detect differences between diabetes types, age, gender and treatment subgroups. In several aspects, for example, freedom of worries, type 1 patients report lower than type 2, and younger patients lower than older. Associations were found between some scores and glycated haemoglobin, but none with systolic blood pressure or low-density lipoprotein cholesterol. Clinicians report positive experience of using scores, visually presented, in the patient dialogue.ConclusionsThe questionnaire measures and detects differences in patient well-being, abilities and judgements of diabetes care, and identifies areas for improvement. To further improve diabetes care, we conclude that patient-reported measures are important supplements to cardiovascular and diabetes complication risk factors, reflecting patient experiences of living with diabetes and diabetes care.

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Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden

Cited by 17 publications

References 44 publications

New Approaches to Providing Individualized Diabetes Care in the 21st Century

New Approaches to Providing Individualized Diabetes Care in the 21st Century

New Diabetes Questionnaire to add patients’ perspectives to diabetes care for adults with type 1 and type 2 diabetes: nationwide cross-sectional study of construct validity assessing associations with generic health-related quality of life and clinical variables

Patient-reported outcome and experience measures for diabetes: development of scale models, differences between patient groups and relationships with cardiovascular and diabetes complication risk factors, in a combined registry and survey study in Sweden

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