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

The participatory development of a national core set of person-centred diabetes outcome constructs for use in routine diabetes care across healthcare sectors

BACKGROUND: This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to support an expert working group representing multiple health sectors and healthcare disciplines and people with diabetes to establish a core set of patient-important outcome constructs for use in routine diabetes care. METHODS: 26 people with diabetes and family members were recruited through purposive sampling to participate in interviews, focus groups, voting and plenary activities in order to be part of identifying outcome constructs. Content and qualitative analysis methods were used with literature reviews to inform a national multi-stakeholder consensus process for a core set of person-centred diabetes outcome constructs to be used in routine diabetes care across health care settings. RESULTS: 21 people with diabetes and 5 family members representing type 1 and 2 diabetes and a range of age groups, treatment regimens and disease burden identified the following patient-reported outcome constructs as an important supplement to clinical indicators for outcome assessment in routine diabetes care: self-rated health, psychological well-being, diabetes related emotional distress and quality of life, symptom distress, treatment burden, blood sugar regulation and hypoglycemia burden, confidence in self-management and confidence in access to person-centred care and support. Consensus was reached by a national multi-stakeholder expert group to adopt measures of these constructs as a national core diabetes outcome set for use in routine value-based diabetes care. CONCLUSIONS: We found that patient-reported outcome (PRO) constructs and clinical indicators are needed in core diabetes outcome sets to evaluate outcomes of diabetes care which reflect key needs and priorities of people with diabetes. The incorporation of patient-reported outcome constructs should be considered complementary to clinical indicators in multi-stakeholder value-based health care strategies. We found participatory research methods were useful in facilitating the identification of a core prioritised set of diabetes outcome constructs for routine value-based diabetes care. The use of our method for involving patients may be useful for similar efforts in other disease areas aimed at defining suitable outcomes of person-centred value-based care. Future research should focus on developing acceptable and psychometrically valid measurement instruments to evaluate these outcome constructs as part of routine diabetes care. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-021-00309-7

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

Comparing national policy and programme strategies for managing the psychosocial aspects of diabetes

The DAWN2 findings emphasise the importance of having national person-centred diabetes care policies supporting clinical guidelines or standards of care that include regular psychosocial assessments, and reimbursement of psychological care as part of routine diabetes care. ● The responses of HCPs and PWD across the 17 countries confirm the need for policies, diabetes care standards and reimbursement for psychological aspects of diabetes

Comparing national policies and programmes for education and training in diabetes management

The 2012 situational policy desk research proved useful for identifying national public policies responsive to diabetes education and training, but these did not align with survey participation rates for diabetes education and training as reported by PWD, FMs and HCPs. ● In the 2012 situational analysis of national policies, it was found that making education accessible, reimbursed and part of mandatory treatment or care did not result in higher diabetes education participation rates for PWD, FMs and HCPs. Further research on policies and diabetes education programmes is needed to understand why participation rates are low. ● Policies are needed to support education for PWD as it has been shown in other studies that PWD who participated in diabetes education reported fewer psychological problems and enhanced self-management compared with those who had not participated in any educational programme.5 ● As part of a global call to action, each country has a responsibility to make improvements in diabetes education and training access, standards or certification, and reimbursement, all of which promote active stakeholder participation and improved diabetes care and outcomes

Co-creation of patient engagement quality guidance for medicines development: an international multistakeholder initiative

Introduction: Meaningful patient engagement (PE) can enhance medicines’ development. However, the current PE landscape is fragmentary and lacking comprehensive guidance. Methods: We systematically searched for PE initiatives (SYNaPsE database/publications). Multistakeholder groups integrated these with their own PE expertise to co-create draft PE Quality Guidance which was evaluated by public consultation. Projects: exemplifying good PE practice were identified and assessed against PE Quality Criteria to create a Book of Good Practices (BOGP). Results: Seventy-six participants from 51 organisations participated in nine multistakeholder meetings (2016–2018). A shortlist of 20relevant PE initiatives (from 170 screened) were identified. The co-created INVOLVE guidelines provided the main framework for PE Quality Guidance and was enriched with the analysis of the PE initiatives and the PE expertise of stakeholders. Seven key PE Quality Criteria were identified. Public consultation yielded 67 responses from diverse backgrounds. The PE Quality Guidance was agreed to be useful for achieving quality PE in practice, understandable, easy to use, and comprehensive. Overall, eight initiatives from the shortlist and from meeting participants were selected for inclusion in the BOGP based on demonstration of PE Quality Criteria and willingness of initiative owners to collaborate. Discussion: The PE Quality Guidance and BOGP are practical resources which will be continually updated in response to user feedback. They are not prescriptive, but rather based on core principles, which can be applied according to the unique needs of each interaction and initiative. Implementation of the guidance will facilitate improved and systematic PE across the medicines’ development lifecycle

The impact of the COVID-19 pandemic on cancer diagnosis based on pathology notifications : A comparison across the Nordic countries during 2020

The severity of the COVID-19 pandemic and subsequent mitigation strategies have varied across the Nordic countries. In a joint Nordic population-based effort, we compared patterns of new cancer cases and notifications between the Nordic countries during 2020. We used pathology notifications to cancer registries in Denmark, the Faroe Islands, Finland, Iceland, Norway and Sweden to determine monthly numbers of pathology notifications of malignant and in situ tumours from January to December 2020 compared to 2019 (2017-2019 for Iceland and the Faroe Islands). We compared new cancer cases per month based on unique individuals with pathology notifications. In April and May 2020, the numbers of new malignant cases declined in all Nordic countries, except the Faroe Islands, compared to previous year(s). The largest reduction was observed in Sweden (May: -31.2%, 95% CI -33.9, -28.3), followed by significant declines in Finland, Denmark and Norway, and a nonsignificant decline in Iceland. In Denmark, Norway, Sweden and Finland the reporting rates during the second half of 2020 rose to almost the same level as in 2019. However, in Sweden and Finland, the increase did not compensate for the spring decline (annual reduction -6.2% and -3.6%, respectively). Overall, similar patterns were observed for in situ tumours. The COVID-19 pandemic led to a decline in rates of new cancer cases in Sweden, Finland, Denmark and Norway, with the most pronounced reduction in Sweden. Possible explanations include the severity of the pandemic, temporary halting of screening activities and changes in healthcare seeking behaviour.Peer reviewe