| 1. |
- Borg, Sixten, et al.
(författare)
-
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
- 2018
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 9:1
-
Tidskriftsartikel (refereegranskat)abstract
- Purpose The 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 participants The 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.Methods We 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.Results We 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.Conclusions The 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.
|
|
| 2. |
- Cederholm, Jan, et al.
(författare)
-
Systolic blood pressure and risk of cardiovascular diseases in type 2 diabetes : an observational study from the Swedish national diabetes register
- 2010
-
Ingår i: Journal of Hypertension. - 0263-6352 .- 1473-5598. ; 28:10, s. 2026-2035
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: To estimate risks of fatal/nonfatal coronary heart disease (CHD), stroke and cardiovascular disease (CVD) with SBP in an observational study of patients with type 2 diabetes. Methods: Twelve thousand, six hundred and seventy-seven patients aged 30–75 years, treated with antihypertensive drugs, without previous congestive heart failure, followed for 5 years. Results: Risk curves of CHD and stroke increased progressively with higher baseline or updated mean SBP in a Cox model, in all participants, and in two subgroups without (n = 10 304) or with (n = 2373) a history of CVD, with no J-shaped risk curves at low SBP levels. Hazard ratios for CHD and stroke per 10-mmHg increase in updated mean SBP in all participants, adjusting for clinical characteristics and traditional risk factors, were 1.08 (1.04–1.13) and 1.20 (1.13–1.27), P < 0.001. With updated mean SBP of 110–129 mmHg as reference, SBP of at least 140 mmHg showed risk increases of 37% for CHD, 86% for stroke and 44% for CVD (P = 0.001 to <0.001), whereas SBP of 130–139 mmHg showed nonsignificant risk increases for these outcomes. With baseline SBP of 110–129 mmHg, CHD and CVD risks increased with further SBP reduction, hazard ratios were 1.77 and 1.73 (P = 0.002), but decreased considerably for CHD, stroke and CVD with higher baseline SBP. Conclusion: Risks of CHD and stroke increased progressively with higher SBP, with no J-shaped curves, although risk increase was significant only for SBP of at least 140 mmHg, but not comparing 130–139 and 110–129 mmHg. Additionally, baseline SBP of 110–129 mmHg showed increased CHD and CVD risk with further SBP reduction during follow-up, whereas baseline SBP of at least 130 showed benefits.
|
|
| 3. |
- Nilsson, Peter, et al.
(författare)
-
Trends in blood pressure control in patients with type 2 diabetes : data from the Swedish National Diabetes Register (NDR)
- 2011
-
Ingår i: Blood Pressure. - : Informa UK Limited. - 0803-7051 .- 1651-1999. ; 20:6, s. 348-354
-
Tidskriftsartikel (refereegranskat)abstract
- We assessed blood pressure (BP) trends in patients with type 2 diabetes from a national diabetes register using three cross-sectional samples (aged 30?85 years) in 2005, 2007 and 2009, and in patients from 2005 followed individually until 2009. The prevalence of hypertension was 87% among all 180 369 patients in 2009, although lower in subgroups with ages 30?39, 40?49 and 50?59 years: 40%, 60% and 77%. In the three cross-sectional surveys, mean BP decreased (141/77?136/76 mmHg), uncontrolled BP? 140/90 mmHg decreased (58?46%), and antihypertensive drug treatment (AHT) increased (73?81%). Comparatively in 79 185 patients followed individually for 5 years, mean BP decreased (141/77?137/75 mmHg), uncontrolled BP ?140/90 mmHg decreased (58?47%) and AHT increased (73?82%). Independent predictors of BP decrease were BMI decrease (stronger) and increase in AHT. AHT occurred among 81% of all patients in 2009. In 57 645 patients on AHT followed individually, mean BP decreased (143/77?138/75 mmHg) and uncontrolled BP ?140/90 mmHg decreased (63?50%). Among 5164 patients with nephropathy on AHT followed individually, BP <130/80 mmHg increased (12?21%). In conclusion, BP control improved from 2005 to 2009, relative to BMI decrease and AHT increase, although still about half had BP ?140/90 mmHg.
|
|
| 4. |
- Svedbo Engström, Maria, 1968-, et al.
(författare)
-
Implementing the Digital Diabetes Questionnaire as a clinical tool in routine diabetes care : Focus group discussions with patients and health care professionals
- 2022
-
Ingår i: JMIR Diabetes. - : JMIR Publications Inc.. - 2371-4379. ; 7:2
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The Diabetes Questionnaire is a digital patient-reported outcome and experience measure for adults living with diabetes. The Diabetes Questionnaire is intended for use in routine clinical visits in diabetes care and to enable patient perspectives to be integrated into the Swedish National Diabetes Register. The Diabetes Questionnaire was developed on the basis of patients' perspectives, and evidence for its measurement qualities has been demonstrated. Patients receive an invitation to complete the questionnaire before clinical visits, and the patient and health care professional (HCP) can discuss the findings, which are instantly displayed during the visit. Implementation processes for new tools in routine care need to be studied to understand the influence of contextual factors, the support needed, and how patients and HCPs experience clinical use.OBJECTIVE: The aim of this study was to describe patients' and HCPs' experiences of initiating the use of the digital Diabetes Questionnaire as a clinical tool in routine diabetes care, supported by a structured implementation strategy involving initial education, local facilitators, and regular follow-ups.METHODS: In this qualitative study, semistructured focus group discussions were conducted 12 months after the use of the Diabetes Questionnaire was initiated. Participants were diabetes specialist nurses and physicians (20 participants in 4 groups) at hospital-based outpatient clinics or primary health care clinics and adults with type 1 or type 2 diabetes (15 participants in 4 groups). The audiotaped transcripts were analyzed using inductive qualitative content analysis.RESULTS: The results revealed 2 main categories that integrated patients' and HCPs' experiences, which together formed an overarching theme: While implementation demands new approaches, the Diabetes Questionnaire provides a broader perspective. The first main category (The Diabetes Questionnaire supports person-centered clinical visits) comprised comments expressing that the digital Diabetes Questionnaire can initiate and encourage reflection in preparation for clinical visits, bring important topics to light during clinical visits, and broaden the scope of discussion by providing additional information. The second main category (The process of initiating the implementation of the Diabetes Questionnaire) comprised comments that described differences in engagement among HCPs and their managers, challenges of establishing new routines, experiences of support during implementation, thoughts about the Diabetes Questionnaire, need to change local administrative routines, and opportunities and concerns for continued use.CONCLUSIONS: The Diabetes Questionnaire can broaden the scope of health data in routine diabetes care. While implementation demands new approaches, patients and HCPs saw potential positive impacts of using the questionnaire at both the individual and group levels. Our results can inform further development of implementation strategies to support the clinical use of the questionnaire.
|
|
| 5. |
|
|
| 6. |
|
|
| 7. |
- Albanese-O'Neill, A., et al.
(författare)
-
Changes in HbA1c Between 2011 and 2017 in Germany/Austria, Sweden, and the United States: A Lifespan Perspective
- 2022
-
Ingår i: Diabetes Technology & Therapeutics. - : Mary Ann Liebert Inc. - 1520-9156 .- 1557-8593. ; 24:1, s. 32-41
-
Tidskriftsartikel (refereegranskat)abstract
- Aims: This study assessed hemoglobin A1c (HbA1c) across the lifespan in people with type 1 diabetes (T1D) in Germany/Austria, Sweden, and the United States between 2011 and 2017 to ascertain temporal and age-related trends. Methods: Data from the Diabetes-Patienten-Verlaufsdokumentation (DPV) (n = 25,651 in 2011, n = 29,442 in 2017); Swedish Pediatric Diabetes Quality Registry (SWEDIABKIDS)/National Diabetes Register (NDR), (n = 44,474 in 2011, n = 53,690 in 2017); and T1D Exchange (n = 16,198 in 2011, n = 17,087 in 2017) registries were analyzed by linear regression to compare mean HbA1c overall and by age group. Results: Controlling for age, sex, and T1D duration, HbA1c increased in the United States between 2011 and 2017, decreased in Sweden, and did not change in Germany/Austria. Controlling for sex and T1D duration, mean HbA1c decreased between 2011 and 2017 in all age cohorts in Sweden (P < 0.001). In the United States, HbA1c stayed the same for participants <6 years and 45 to <65 years and increased in all other age groups (P < 0.05). In Germany/Austria, HbA1c stayed the same for participants <6 to <13 years and 18 to <25 years; decreased for participants ages 13 to <18 years (P < 0.01); and increased for participants >= 25 years (P < 0.05). Conclusions: The comparison of international trends in HbA1c makes it possible to identify differences, explore underlying causes, and share quality improvement processes. National quality improvement initiatives are well accepted in Europe but have yet to be implemented systematically in the United States. However, disparities created by the lack of universal access to health care coverage, unequal access to diabetes technologies (e.g., continuous glucose monitoring) regardless of insurance status, and high out-of-pocket cost for the underinsured ultimately limit the potential of quality improvement initiatives.
|
|
| 8. |
- Borg, Sixten, et al.
(författare)
-
Quality of life in chronic conditions using patient-reported measures and biomarkers: a DEA analysis in type 1 diabetes
- 2019
-
Ingår i: Health Economics Review. - : Springer Science and Business Media LLC. - 2191-1991. ; 9:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background A chronic disease impacts a patient's daily life, with the burden of symptoms and managing the condition, and concerns of progression and disease complications. Such aspects are captured by Patient-Reported Outcomes Measures (PROM), assessments of e.g. wellbeing. Patient-Reported Experience Measures (PREM) assess patients' experiences of healthcare and address patient preferences. Biomarkers are useful for monitoring disease activity and treatment effect and determining risks of progression and complications, and they provide information on current and future health. Individuals may differ in which among these aspects they consider important. We aimed to develop a measure of quality of life using biomarkers, PROM and PREM, that would provide an unambiguous ranking of individuals, without presuming any specific set of importance weights. We anticipated it would be useful for studying needs and room for improvement, estimating the effects of interventions and comparing alternatives, and for developing healthcare with a broad focus on the individual. We wished to examine if efficiency analysis could be used for this purpose, in an application to individuals with type 1 diabetes. Results We used PROM and PREM data linked to registry data on risk factors, in a large sample selected from the National Diabetes Registry in Sweden. Efficiency analysis appears useful for evaluating the situation of individuals with type 1 diabetes. Quality of life was estimated as efficiency, which differed by age. The contribution of different components to quality of life was heterogeneous, and differed by gender, age and duration of diabetes. Observed quality of life shortfall was mainly due to inefficiency, and to some extent due to the level of available inputs. Conclusions The efficiency analysis approach can use patient-reported outcomes measures, patient-reported experience measures and comorbidity risk factors to estimate quality of life with a broad focus on the individual, in individuals with type 1 diabetes. The approach enables ranking and comparisons using all these aspects in parallel, and allows each individual to express their own view of which aspects are important to them. The approach can be used for policy regarding interventions on inefficiency as well as healthcare resource allocation, although currently limited to type 1 diabetes.
|
|
| 9. |
- Brinck, J., et al.
(författare)
-
Cardiovascular Outcomes in Patients With Both Diabetes and Phenotypic Familial Hypercholesterolemia: A Nationwide Register-Based Cohort Study
- 2022
-
Ingår i: Diabetes care. - : American Diabetes Association. - 0149-5992 .- 1935-5548. ; 45:12, s. 3040-3049
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE Patients with diabetes or familial hypercholesterolemia (FH) have an increased incidence of cardiovascular diseases compared with the population, but whether this risk is exacerbated in patients with combined traits is unknown. RESEARCH DESIGN AND METHODS In this Swedish nationwide, register-based cohort study, patients with diabetes were included between 2002 and 2020. Adjusted Cox proportional hazards models were used to assess the risk of cardiovascular events in patients with or without phenotypic FH (‡6 points for phenotypic FH according to Dutch Lipid Clinic Network criteria) compared with general population control subjects without diabetes as reference. RESULTS A total of 45,585 patients with type 1 diabetes (227,923 control subjects) and 655,250 patients with type 2 diabetes (655,250 control subjects) were followed for a median of 14.1 and 7.9 years, respectively. Of those, 153 and 7,197, respectively, had phenotypic FH. Compared with control subjects, patients with diabetes and phenotypic FH had higher risk of cardiovascular mortality (type 1: Hazard ratio 21.3 [95% CI 14.6-31.0]; type 2: 2.40 [2.19-2.63]) and of a cardiovascular event (type 1: 15.1 [11.1-20.5]; type 2: 2.73 [2.58-2.89]). Further, patients with diabetes and phenotypic FH had higher LDL-cholesterol levels during observation (P < 0.05) and increased risk of all major cardiovascular outcomes (P < 0.0001) than patients with diabetes but without FH. The proportion receiving lipid-lowering treatment was higher in patients with phenotypic FH (P < 0.0001). CONCLUSIONS Patients with both diabetes and phenotypic FH are more at risk for adverse cardiovascular outcomes and have higher LDL-cholesterol levels despite receiving intensified lipid-lowering therapy.
|
|
| 10. |
- Cederholm, Jan, et al.
(författare)
-
A new model for 5-year risk of cardiovascular disease in Type 1 diabetes : from the Swedish National Diabetes Register (NDR)
- 2011
-
Ingår i: Diabetic Medicine. - : Wiley. - 0742-3071 .- 1464-5491. ; 28:10, s. 1213-1220
-
Tidskriftsartikel (refereegranskat)abstract
- Aims: We assessed the association between risk factors and cardiovascular disease in an observational study of patients with Type 1 diabetes from the Swedish National Diabetes Register.Methods: A derivation sample of 3661 patients, aged 30-65 years, 6.1% with previous cardiovascular disease, baseline 2002, and 197 cardiovascular disease events when followed for 5 years until 2007. A separate validation data set of 4484 patients, baseline 2003, 201 cardiovascular disease events when followed for 4 years.Results: Adjusted hazard ratios at Cox regression for fatal/non-fatal cardiovascular disease were: diabetes duration 2.76 (2.21-3.44); onset age 1.47 (1.21-1.78); log ratio total cholesterol:HDL cholesterol 1.26 (1.09-1.45); log HbA(1c) 1.19 (1.03-1.38); log systolic blood pressure 1.17 (1.01-1.34) (1 SD increase in continuous variables); smoker 1.76 (1.27-2.46); macroalbuminuria (> 200 mu g/min) 1.52 (1.10-2.10); previous cardiovascular disease 3.51 (2.54-4.84). All eight variables were used to elaborate a risk equation for 5-year cardiovascular disease risk. Regarding calibration in the derivation data set, ratio predicted 5-year risk (mean 5.4 +/- 7.9%) to observed event rate was 1.0. Discrimination was sufficient, with C-statistic 0.83, sensitivity and specificity 72 and 77%, respectively, for the top quartile of predicted risk. Similarly, calibration and discrimination were adequate in the validation data set: ratio of predicted 4-year risk/observed rate 0.94, C-statistic 0.80, sensitivity and specificity 62 and 77%, respectively, for the top quartile.Conclusions: This 5-year cardiovascular disease risk model from a large observational study of patients with Type 1 diabetes in routine care showed adequate calibration and discrimination and can be useful for clinical practice. It should also be tested in patients with Type 1 diabetes from other countries.
|
|
