| 1. |
- Svedbo Engström, Maria, 1980, et al.
(författare)
-
A disease-specific questionnaire for measuring patient-reported outcomes and experiences in the Swedish National Diabetes Register: Development and evaluation of content validity, face validity, and test-retest reliability
- 2018
-
Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 101:1, s. 139-146
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: To describe the development and evaluation of the content and face validity and test-retest reliability of a disease-specific questionnaire that measures patient-reported outcomes and experiences for the Swedish National Diabetes Register for adult patients who have type 1 or type 2 diabetes. Methods: In this methodological study, a questionnaire was developed over four phases using an iterative process. Expert reviews and cognitive interviews were conducted to evaluate content and face validity, and a postal survey was administered to evaluate test-retest reliability. Results: The expert reviews and cognitive interviews found the disease-specific questionnaire to be understandable, with relevant content and value for diabetes care. An item-level content validity index ranged from 0.6-1.0 and a scale content validity/average ranged from 0.7-1.0. The fourth version, with 33 items, two main parts and seven dimensions, was answered by 972 adults with type 1 and type 2 diabetes (response rate 61%). Weighted Kappa values ranged from 0.31-0.78 for type 1 diabetes and 0.27-0.74 for type 2 diabetes. Conclusions: This study describes the initial development of a disease-specific questionnaire in conjunction with the NDR. Content and face validity were confirmed and test-retest reliability was satisfactory. Practice implications: With the development of this questionnaire, the NDR becomes a clinical tool that contributes to further understanding the perspectives of adult individuals with diabetes. (c) 2017 Elsevier B.V. All rights reserved.
|
|
| 2. |
- Svedbo Engström, Maria, 1980, et al.
(författare)
-
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
- 2020
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:11
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives To 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. Design Cross-sectional survey. Setting Swedish diabetes care clinics connected to the National Diabetes Register (NDR). Participants Among 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 measures The Diabetes Questionnaire, the generic 36-item Short Form version 2 (SF-36v2) health survey and clinical variables. Results Related 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. Conclusions This 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.
|
|
| 3. |
- Eeg-Olofsson, Katarina, 1968, et al.
(författare)
-
Patients' and Health Care Professionals' Perceptions of the Potential of Using the Digital Diabetes Questionnaire to Prepare for Diabetes Care Meetings: Qualitative Focus Group Interview Study
- 2020
-
Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 22:8
-
Tidskriftsartikel (refereegranskat)abstract
- Background: In effective diabetes management, it is important that providers and health care systems prioritize the delivery of patient-centered care and that they are respectful of and responsive to individual patient preferences and barriers. Objective: The objective of the study was to conduct focus group interviews to capture patients' and health care professionals' perceptions and attitudes regarding digital technology and to explore how the digital Diabetes Questionnaire can be used to support patient participation in diabetes care, as a basis for an implementation study. Methods: A qualitative study was conducted with six focus group discussions with diabetes specialist nurses and medical doctors (n=29) and four focus group discussions with individuals with diabetes (n=23). A semistructured focus group interview guide was developed, including probing questions. The data were transcribed verbatim, and qualitative content analysis was performed using an inductive approach. Results: Two main categories were revealed by the qualitative analysis: perceptions of digital technology and the digital questionnaire in diabetes management and care and perceptions of participation in diabetes care. An overarching theme that emerged from the focus group interviews was patients' and professionals' involvement in diabetes care using digital tools. Conclusions: The analysis identified important factors to consider when introducing the digital Diabetes Questionnaire in clinical use. Both professionals and patients need support and training in the practical implementation of the digital questionnaire, as well as the opportunity to provide feedback on the questionnaire answers.
|
|
| 4. |
- Anderbro, Therese, et al.
(författare)
-
Fear of hypoglycemia : relationship to hypoglycemic risk and psychological factors
- 2014
-
Ingår i: Acta Diabetologica. - : Springer Science and Business Media LLC. - 0940-5429 .- 1432-5233.
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The major aims of this study were to examine (1) the association between fear of hypoglycemia (FOH) in adults with type 1 diabetes with demographic, psychological (anxiety and depression), and disease-specific clinical factors (hypoglycemia history and unawareness, A1c), including severe hypoglycemia (SH), and (2) differences in patient subgroups categorized by level of FOH and risk of SH.RESEARCH DESIGN AND METHODS: Questionnaires were mailed to 764 patients with type 1 diabetes including the Swedish translation of the Hypoglycemia Fear Survey (HFS) and other psychological measures including the Perceived Stress Scale, Hospital Anxiety and Depression Scale, Anxiety Sensitivity Index, Social Phobia Scale, and Fear of Complications Scale. A questionnaire to assess hypoglycemia history was also included and A1c measures were obtained from medical records. Statistical analyses included univariate approaches, multiple stepwise linear regressions, Chi-square t tests, and ANOVAs.RESULTS: Regressions showed that several clinical factors (SH history, frequency of nocturnal hypoglycemia, self-monitoring) were significantly associated with FOH but R (2) increased from 16.25 to 39.2 % when anxiety measures were added to the model. When patients were categorized by level of FOH (low, high) and SH risk (low, high), subgroups showed significant differences in non-diabetes-related anxiety, hypoglycemia history, self-monitoring, and glycemic control.CONCLUSION: There is a strong link between FOH and non-diabetes-related anxiety, as well as hypoglycemia history. Comparison of patient subgroups categorized according to level of FOH and SH risk demonstrated the complexity of FOH and identified important differences in psychological and clinical variables, which have implications for clinical interventions.
|
|
| 5. |
- Rossen, Jenny, et al.
(författare)
-
'This is why I'm doing a lot of exercise' : A qualitative study of participant's experiences of the Sophia Step Study
- 2018
-
Ingår i: International Diabetes Nursing. - : Informa UK Limited. - 2057-3316 .- 2057-3324.
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Support for physical activity (PA) is central in diabetes care. The Sophia Step Study is a three-armed randomised controlled trial aiming to evaluate different levels of support for increased PA in prediabetes and Type 2 diabetes. With the purpose to reveal the programme components and the mediating factors from the participants’ perspective this paper aims to report a qualitative exploration of adhering participants’ experiences after two years’ study participation.Methods: Semi-structured interviews were conducted with 18 participants (men, n = 11, women, n = 7, prediabetes, n = 5, Type 2 diabetes, n = 13, median age 68.5 years) who completed a two-year multi-component (n = 7), singlecomponent (n = 6) intervention or served as controls (n = 5) at a primary care center in Stockholm, Sweden. The interviews were analysed using content analysis with an inductive approach. Sophia Step Study is registered at ClinicalTrials.gov with Identifier: NCT02374788.Results: The participants recalled the frequent study assessments as providing feedback of health outcomes; positive reinforcement; a sense of sentinel and a personalised approach. Group meetings, pedometers and health check-ups were valued as resources for increased awareness and motivation of PA; establishment of new routines and control over the own health. The long program duration allowed for maintenance of awareness and routines for PAConclusion: Adhering participants in theory-based interventions, but also in the control group, identified key mediators to support for PA. Feedback of results, personalised encouragement, emotional support and selfmonitoring should be regarded in self-management of PA to optimise patient motivation and outcomes.
|
|
| 6. |
- Amsberg, Susanne, et al.
(författare)
-
Acceptance and commitment therapy (ACT) for adult type 1 diabetes management : study protocol for a randomised controlled trial
- 2018
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 8:11
-
Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Integrating diabetes self-management into daily life involves a range of complex challenges for affected individuals. Environmental, social, behavioural and emotional psychological factors influence the lives of those with diabetes. The aim of this study is to evaluate the impact of a stress management group intervention based on acceptance and commitment therapy (ACT) among adults living with poorly controlled type 1 diabetes.METHODS AND ANALYSIS: This study will use a randomised controlled trial design evaluating treatment as usual (TAU) and ACT versus TAU. The stress management group intervention will be based on ACT and comprises a programme divided into seven 2-hour sessions conducted over 14 weeks. A total of 70 patients who meet inclusion criteria will be recruited over a 2-year period with follow-up after 1, 2 and 5 years.The primary outcome measure will be HbA1c. The secondary outcome measures will be the Depression Anxiety Stress Scales, the Swedish version of the Hypoglycemia Fear Survey, the Swedish version of the Problem Areas in Diabetes Scale, The Summary of Self-Care Activities, Acceptance Action Diabetes Questionnaire, Swedish Acceptance and Action Questionnaire and the Manchester Short Assessment of Quality of Life. The questionnaires will be administered via the internet at baseline, after sessions 4 (study week 7) and 7 (study week 14), and 6, 12 and 24 months later, then finally after 5 years. HbA1c will be measured at the same time points.Assessment of intervention effect will be performed through the analysis of covariance. An intention-to-treat approach will be used. Mixed-model repeated measures will be applied to explore effect of intervention across all time points.ETHICS AND DISSEMINATION: The study has received ethical approval (Dnr: 2016/14-31/1). The study findings will be disseminated through peer-reviewed publications, conferences and reports to key stakeholders.TRIAL REGISTRATION NUMBER: NCT02914496; Pre-results.
|
|
| 7. |
- 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.
|
|
| 8. |
- Anderbro, Therese Carin, et al.
(författare)
-
A longitudinal study of fear of hypoglycaemia in adults with type 1 diabetes
- 2018
-
Ingår i: Endocrinology, Diabetes & Metabolism. - : Wiley. - 2398-9238 .- 2057-3316. ; 1:2
-
Tidskriftsartikel (refereegranskat)abstract
- Aims: To investigate fear of hypoglycaemia (FoH) longitudinally in a cross‐sectional study of adult patients with type 1 diabetes. Specifically, we investigated two subgroups of patients who over 4 years either showed a substantial increase or decrease in level of FoH to identify factors associated with changes in FoH.Methods: The Swedish version of the Hypoglycaemia Fear Survey (HFS) along with a questionnaire to assess hypoglycaemia history was sent by mail to 764 patients in 2010. The responders in 2010 (n = 469) received another set of the same two questionnaires in 2014. HbA1c, insulin regimen, weight and creatinine from 2010 and 2014 were obtained from medical records. Those with an absolute difference in HFS scores ≥ 75th percentile were included in the subgroup analyses. Statistical analyses included one‐sample t tests, chi‐square and McNemar's test.Results: The absolute difference in the HFS total score (n = 347) between 2010 and 2014 was m = ±7.6, SD ± 6. In the increased FoH group, more patients reported a high level of moderate hypoglycaemic episodes as well as impaired awareness of hypoglycaemia in 2014 compared with the decreased FoH group. There were more subjects in the increased FoH group with insulin pumps in 2014 and in 2010. In the decreased FoH group, more patients had a high frequency of daily self‐monitoring of blood glucose (SMBG) in 2010 and in 2014.Conclusions: Fear of hypoglycaemia is stable across time for most patients. Changes in fear level are associated with changes in hypoglycaemia frequency. Thus, asking patients about changes in hypoglycaemia experiences is of great importance.
|
|
| 9. |
- Svedbo Engström, Maria, 1980, et al.
(författare)
-
What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
- 2016
-
Ingår i: Bmj Open. - : BMJ. - 2044-6055. ; 6:3
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. Design Semistructured qualitative interviews analysed using content analysis. Setting Hospital-based outpatient clinics and primary healthcare clinics in Sweden. Participants 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). Inclusion criteria: Swedish adults (18years) living with type 1 DM or type 2 DM (duration 5years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. Results To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme To live a good life with diabetes' constituting the two main categories How I feel and how things are going with my diabetes' and Support from diabetes care in managing diabetes' including five different categories. Conclusions Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.
|
|
| 10. |
- Wijk, Ingrid, et al.
(författare)
-
Impact of an acceptance and commitment therapy programme on HbA1c, self-management and psychosocial factors in adults with type 1 diabetes and elevated HbA1c levels : a randomised controlled trial
- 2023
-
Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 13:12, s. e072061-
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: To evaluate the impact of an Acceptance and Commitment Therapy (ACT) programme, tailored for people living with type 1 diabetes, on glycated haemoglobin (HbA1c), self-management and psychosocial factors among individuals with HbA1c>60 mmol/mol compared with treatment as usual (TAU). Setting: An endocrinologic clinic in Sweden. Participants: In this randomised controlled trial, 81 individuals with type 1 diabetes, aged 18–70 years with HbA1c>60 mmol/mol, were randomly assigned to either an ACT group intervention or TAU. Exclusion criteria were: unable to speak Swedish, untreated or severe psychiatric disease, cortisone treatment, untreated thyroid disease and newly started insulin pump therapy. At the 2-year follow-up, HbA1c was measured in 26 individuals. Intervention: The ACT programme comprised seven 2-hour sessions held over 14 weeks and focused on acceptance of stressful thoughts and emotions, and to promote value-based committed action. Outcomes: The primary outcome was HbA1c, and the secondary outcomes were measures of depression, anxiety, general stress, fear of hypoglycaemia, diabetes distress, self-care activities, psychological flexibility (general and related to diabetes) and quality of life. The primary endpoint was HbA1c 2 years after the intervention programme. Linear mixed models were used to test for an interaction effect between measurement time and group. Results: Likelihood ratio test of nested models demonstrated no statistically significant interaction effect (χ2=0.49, p=0.485) between measurement time and group regarding HbA1c. However, a statistically significant interaction effect (likelihood ratio test χ2=12.63, p<0.001) was observed with improved scores on The Acceptance and Action Questionnaire in the intervention group after 1 and 2 years. Conclusions: No statistically significant difference was found between the groups regarding the primary outcome measure, HbA1c. However, the ACT programme showed a persistent beneficial impact on psychological flexibility in the intervention group. The dropout rate was higher than expected, which may indicate a challenge in this type of study. Trial registration number NCT02914496.
|
|
