Psychological well-being and diabetes-related distress in states of type 2 diabetes in the first multi-national Diabetes Attitudes, Wishes and Needs (DAWN) Study

Purpose. To examine well-being and diabetes-related distress across several common states differentiated in the course of type 2 diabetes. Material and methods. Random samples of adults with type 2 diabetes were obtained from multiple co- untries in the first DAWN (Diabetes Attitudes, Wishes, and Needs) Study (n = 3432). All data were obtained during structured interviews. Criteria for defining states of diabetes included time since diagnosis of diabetes, the timing and nature of anti-hyperglycaemic medication regimens, and the timing and number of complications.  Results. Duration of diabetes closely corresponded to a set of typical states based on the criteria. Using analysis of covariance to control for confounding factors, diabetes-related distress and psychological well-being were significantly (p &lt; 0.05) worse for persons with diabetes with more complications and more intense medication regimens. Longer duration of insulin use was significantly associated with more diabetes-related distress. Worse distress and well-being were significantly associated with the accumulation of complications over time, but were more strongly associated with recently diagnosed complications than with more distally diagnosed complications.  Conclusions. Well-being and distress varied over sta- tes as defined by the nature and timing of diagnoses and medications. The observed patterns were more complex than a linear model of disease staging would suggest. Purpose. To examine well-being and diabetes-related distress across several common states differentiated in the course of type 2 diabetes. Methods. Random samples of adults with type 2 diabetes were obtained from multiple countries in the DAWN (Diabetes Attitudes, Wishes, and Needs) Study (n = 3432). All data were obtained during structured interviews. Criteria for defining states of diabetes included time since diagnosis of diabetes, the timing and nature of anti-hyperglycaemic medication regimens, and the timing and number of complications. Results: Duration of diabetes closely corresponded to a set of typical states based on the criteria. Using analysis of covariance to control for confounding factors, diabetes-related distress and psychological well-being were significantly (p < 0.05) worse for persons with diabetes with more complications and more intense medication regimens. Longer duration of insulin use was significantly associated with more diabetes-related distress. Worse distress and well-being were significantly associated with the accumulation of complications over time, but were more strongly associated with recently diagnosed complications than with more distally diagnosed complications. Conclusions: Well-being and distress varied over states as defined by the nature and timing of diagnoses and medications. The observed patterns were more complex than a linear model of disease staging would suggest

Feasibility and Acceptability of a Digital Patient-Reported Outcome Tool in Routine Outpatient Diabetes Care:Mixed Methods Formative Pilot Study

BackgroundImprovements in the digital capabilities of health systems provide new opportunities for the integration of patient-reported outcome (PRO) solutions in routine care, which can facilitate the delivery of person-centered diabetes care. We undertook this study as part of our development of a new digital PRO diabetes questionnaire and clinical dialog support tool for use by people with diabetes and their health care professionals (HCPs) to improve person-centered diabetes care quality and outcomes. ObjectiveThis study evaluates the feasibility, acceptability, and perceived benefits and impacts of using a digital PRO diabetes tool, DiaProfil, in routine outpatient diabetes care. MethodsOverall, 12 people with diabetes scheduled for routine medical diabetes visits at the outpatient clinic were recruited. Purposive sampling was used to optimize heterogeneity regarding age, gender, duration, type of diabetes, treatment modality, and disease severity. Participants filled out a PRO diabetes questionnaire 2 to 5 days before their visit. During the visit, HCPs used a digital PRO tool to review PRO data with the person with diabetes for collaborative care planning. Participants completed evaluation forms before and after the visit and were interviewed for 30 to 45 minutes after the visit. HCPs completed the evaluation questionnaires after each visit. All visits were audio-recorded and transcribed for analysis. Data were analyzed using quantitative, qualitative, and mixed methods analyses. ResultsPeople with diabetes found the PRO diabetes questionnaire to be relevant, acceptable, and feasible to complete from home. People with diabetes and HCPs found the digital PRO tool to be feasible and acceptable for use during the diabetes visit and would like to continue using it. HCPs were able to use the tool in a person-centered manner, as intended. For several people with diabetes, completion of the questionnaire facilitated positive reflection and better preparation for the visit. The use of the PRO tool primarily improved the quality of the dialog by improving the identification and focus on the issues most important to the person with diabetes. People with diabetes did not report any negative aspects of the PRO tool, whereas HCPs highlighted that it was demanding when the person with diabetes had many PRO issues that required attention within the predefined time allocated for a visit. ConclusionsThe Danish PRO diabetes questionnaire and the digital tool, DiaProfil, are feasible and acceptable solutions for routine diabetes visits, and this tool may generate important benefits related to advancement of person-centered care. Further research is now required to corroborate and expand these formative insights on a larger scale and in diverse health care settings. The results of this study are therefore being used to define research hypotheses and finalize real-world PRO evaluation tools for a forthcoming large-scale multisector implementation study in Denmark

Wskaźnik dobrego samopoczucia i poziom stresu związanego z cukrzycą w różnych stadiach cukrzycy typu 2 w pierwszym międzynarodowym badaniu Diabetes Attitudes, Wishes and Needs (DAWN)

Cel. Celem pracy była ocena wskaźnika dobrego samopoczucia i stresu związanego z cukrzycą w kilku często występujących stanach wyróżnionych w przebiegu cukrzycy typu 2.  Metody. W pierwszym badaniu DAWN (Diabetes Atti- tudes, Wishes, and Needs; Cukrzyca, Postawy, Życzenia i Potrzeby) dobrano losowo próby dorosłych chorych na cukrzycę typu 2 z wielu krajów (n = 3432). Wszystkie dane uzyskano, przeprowadzając ankiety przy użyciu standardowych standaryzowanych kwestionariuszy. Kryteria definiujące stany w cukrzycy obejmowały czas od rozpoznania choroby, czas i rodzaj terapii przeciwhiperglikemicznej oraz czas pojawienia się i liczbę powikłań.  Wyniki. Czas trwania cukrzycy ściśle wiązał się z zestawem typowych stanów określonych na podstawie przyjętych kryteriów. W analizie kowariancji uwzględniającej wpływ czynników zakłócających wykazano, że poziom stresu związanego z cukrzycą i wskaźnik dobrego samopoczucia były istotnie (p &lt; 0,05) gorsze u tych chorych na cukrzycę, u których występowała większa liczba powikłań i którzy stosowali intensywniejsze leczenie. Długi czas trwania cukrzycy wiązał się istotnie z wyższym poziomem stresu związanego z cukrzycą. Wyższy poziom stresu i gorsze samopoczucie wiązały się istotnie z kumulacją powikłań z upływem czasu, ale silniejsza zależność dotyczyła powikłań wykrytych niedawno niż tych, które wystąpiły wcześniej.  Wnioski. Wskaźnik dobrego samopoczucia i poziom stresu różniły się w różnych stanach zdefiniowanych w odniesieniu do rodzaju i czasu rozpoznania oraz leczenia. Obserwowane zmiany były bardziej złożone, niż sugeruje linearny model progresji choroby.

Can the Routine Use of Patient-Reported Outcome Measures Improve the Delivery of Person-Centered Diabetes Care? A Review of Recent Developments and a Case Study

Purpose of Review: In recent years, the recommendation for and use of patient-reported outcome measures (PROMs) in routine diabetes care has significantly increased. We review recent evidence and highlight key opportunities and challenges related to the active clinical use of PROMs to support person-centered diabetes care and focus areas for future research in the area. Recent Findings: Recent pragmatic studies support that integration of multi-dimensional PROMs for diabetes in clinical care as part of a care improvement strategy can be acceptable for and valued by people with diabetes (PWD) and healthcare professionals (HCPs) and may improve multiple aspects of quality of care, including screening, medical care monitoring and decision support, individualization of self-management support and goal-setting, and broader benefits related to active patient participation and person-centred diabetes care. We identify multiple intervention, individual, and care setting characteristics, which influence acceptability, feasibility, implementation, and effectiveness of PROMs in routine care. Recent clinical PROM studies highlight the value of mixed methods research and systematic involvement of PWD, clinicians, and other stakeholders in the design and implementation of questionnaires for patient input in routine diabetes care. Summary: We identified a new significant trend towards participatory development of multi-dimensional PROMs with the aim of IT-enabled integration into routine diabetes care to facilitate multiple components of person-centered diabetes care and better clinical, quality of life, and cost outcomes. While results from large-scale randomized controlled studies are still limited, a growing number of pragmatic implementation studies support that user-centric PROM interventions have the potential to facilitate significant improvements in care for PWD.</p

The Potential Role of Individual-Level Benefit-Risk Assessment in Treatment Decision Making: A DIA Study Endpoints Community Workstream

Benefit-risk assessment is the cornerstone of decision making in medical care, playing a critical role in bringing treatments to market by informing decisions regarding drug development, licensing and reimbursement, and informing treatment decisions made by health care professionals and patients in clinical practice. In regulatory approval decision making, benefit and risk attributes are identified and defined based on available, aggregated clinical data from registration trials. In the context of major developments in recent years for involvement of patients as partners in all phases of drug development and in health care improvement, decision makers increasingly recognize the importance of informing treatment decisions by patient needs, values, experiences, and preferences. Using this as a basis, a DIA workstream was convened to explore the potential of individual-level benefit-risk assessment as a supplement to traditional group-level benefit-risk assessment for evaluating treatment. Various approaches as to how this information could be collected, including via patient-reported outcome measures, open-ended questioning, and stated-preference methods are presented. The utility of this information for various stakeholders is discussed

Benchmarking network for clinical and humanistic outcomes in diabetes (BENCH-D) study: Protocol, tools, and population

Background: In the context of the DAWN-2 initiatives, the BENCH-D Study aims to test a model of regional benchmarking to improve not only the quality of diabetes care, but also patient-centred outcomes. Methods/Design: As part of the AMD-Annals quality improvement program, 32 diabetes clinics in 4 Italian regions extracted clinical data from electronic databases for measuring process and outcome quality indicators. A random sample of patients with type 2 diabetes filled in a questionnaire including validated instruments to assess patientcentred indicators: SF-12 Health Survey, WHO-5 Well-Being Index, Diabetes Empowerment Scale, Problem Areas in Diabetes, Health Care Climate Questionnaire, Patients Assessment of Chronic Illness Care, Barriers to Medications, Patient Support, Diabetes Self-care Activities, and Global Satisfaction for Diabetes Treatment. Data were discussed with participants in regional meetings. Main problems, obstacles and solutions were identified through a standardized process, and a regional mandate was produced to drive the priority actions. Overall, clinical indicators on 78,854 patients have been measured; additionally, 2,390 patients filled-in the questionnaire. The regional mandates were officially launched in March 2012. Clinical and patient-centred indicators will be evaluated again after 18 months. A final assessment of clinical indicators will take place after 30 months. Discussion: In the context of the BENCH-D study, a set of instruments has been validated to measure patient wellbeing and satisfaction with the care. In the four regional meetings, different priorities were identified, reflecting different organizational resources of the different areas. In all the regions, a major challenge was represented by the need of skills and instruments to address psychosocial issues of people with diabetes. The BENCH-D study allows a field testing of benchmarking activities focused on clinical and patient-centred indicators

"I do my best to listen to patients" : qualitative insights into DAWN2 (Diabetes psychosocial care from the perspective of health care professionals in the second diabetes attitudes, wishes and needs study)

AbstractPurposeThe aim of this study was to describe the perspectives of diabetes care professionals regarding the roles and responsibilities of people with diabetes (PWD), health care professionals (HCPs), and the larger society to improve the provision of person-centered diabetes care.MethodsThe survey contained open-ended items about challenges of, successes of, and wishes for improvements in treating adults with diabetes. All responses were systematically coded using a schema developed and validated through multinational collaboration.FindingsParticipants were 4785 diabetes care professionals (physicians, nurses, and dietitians) from 17 countries. The data contained 2 distinct themes. One theme reflected the fact that the roles and responsibilities of HCPs are transitioning from those of one who “tells” to one who “listens” to PWD. Some ways that HCPs can “listen” to PWD and family members is to involve them in goals and to encourage self-management for the improvement of treatment. The second theme identified barriers to successful diabetes care, which include a lack of time and collaboration from HCPs, a lack of availability of resources for treatment, and a lack of psychosocial support.ImplicationsThe views of diabetes care professionals are in transition from a conventional hierarchic approach to a PCC approach. Further adoption of this approach would be facilitated by additional psychosocial training and educational/psychological resources, increased teamwork, and societal changes that would make it easier for people to live successfully with diabetes