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  • 1.
    Borg, Sixten
    et al.
    Lund University, Department of Clinical Sciences in Malmö, Health Economics Unit, Medicon Village, SE-223 81 Lund, Sweden.
    Eeg-Olofsson, Katarina
    University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden and Sahlgrenska University Hospital, Gothenburg, Sweden.
    Palaszewski, Bo
    Region Västra Götaland, Department of Data Management and Analysis, SE-405 44 Gothenburg, Sweden.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden.
    Gerdtham, Ulf-G
    Lund University, Department of Clinical Sciences in Malmö, Health Economics Unit, Medicon Village, SE-223 81 Lund, Sweden; The Swedish Institute for Health Economics (IHE), Box 2127, SE-220 02 Lund, Sweden; Department of Economics, School of Economics and Management, Box 7082, SE-220 07 Lund, Sweden.
    Gudbjörnsdottir, Soffia
    University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, SE-413 46 Gothenburg, Sweden and Centre of Registers Västra Götaland, SE-413 45 Gothenburg, Sweden.
    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 Sweden2018In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 9, no 1, article id e025033Article in journal (Refereed)
    Abstract [en]

    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. Dahlberg, ER
    et al.
    Spets, E
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Sahlgrenska Academy, Institute of Medicine, University of Gothenburg.
    Larshans, M
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Department of Medical Sciences, Uppsala University.
    Experiences of Hypoglycaemia in Adults with Diabetes Mellitus2017In: Journal of Diabetes and Treatment, article id J111Article in journal (Refereed)
    Abstract [en]

    Aims: To describe adults’ experiences of hypoglycaemia in diabetes mellitus, and the consequences of hypoglycaemia in daily life.

    Methods: This study was conducted using qualitative content analysis with an inductive approach. It was performed as a secondary analysis of semi-structured interviews. A total of 29 people participated in the study: 15 with type 1 diabetes and 14 with type 2 diabetes.

    Results: The theme that emerged was: Hypoglycaemia is an ever-present risk that manifests itself in different ways. The following categories were identified: Symptoms of hypoglycaemia can appear like a bolt from the blue. Knowledge comes from life experiences. Training and exercise today often have consequences tomorrow. Self-management may be perceived as a feeling of not being free. Family support can provide security in the illness.

    Conclusion: Hypoglycaemia is perceived as an ever-present risk that can come like a bolt from the blue, which in turn causes fear and problems in the daily life of people with diabetes. Better support, help and information from specialist nurses is needed. Family members should also be given more knowledge and information, in order to reduce the fear and discomfort of hypoglycaemia.

  • 3.
    Elf, Marie
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Wijk, Helle
    Sahlgrenska Akademin, Göteborgs Universitet .
    An assessment of briefs used for designing healthcare environments: a survey in Sweden2012In: Construction Management and Economics, ISSN 0144-6193, E-ISSN 1466-433X, Vol. 30, no 10, p. 835-844Article in journal (Refereed)
    Abstract [en]

    The brief is a central document in decision making during the early stages of the planning and construction (briefing/programming) of healthcare environments. Thus, the demand on the content and quality of these documents is high. This study aimed to assess the content and quality of initial briefs developed in Sweden to obtain an up-to-date picture of current practices of writing project statements in the early stages of designing healthcare environments. A study of 29 initial briefs was performed with a new instrument called the Content and Quality of Brief Instrument (CQB-I). The results showed that, in many cases, the documentation in the briefs was incomplete and that the information did not adequately address users’ needs. In addition, the briefs often did not include any measurable outcomes or explicitly evidence-based information. This study’s findings have implications for identifying areas for improvement in design teams’ documentation practices. Assessment can have a real impact on the quality of briefs and can raise awareness of the need to improve the briefing process itself. The present study is one of the first to assess the content and quality of briefs and provides a starting point for both practitioners and future researchers to explore the role of briefs in briefing process quality improvement.  

  • 4.
    Elf, Marie
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Sahlgrenska akademin.
    Wijk, Helle
    Development of the Content and Quality in Briefs Instrument (CQB-I)2012In: Health Environments Research & Design Journal, ISSN 1937-5867, E-ISSN 2167-5112, Vol. 5, no 3, p. 74-88Article in journal (Refereed)
    Abstract [en]

    Objective: The Content and quality of Briefs Instrument (CQB-I) was designed to develop a valid and reliable audit instrument to examine the content and quality of information in documents (briefs) created in the early stages of designing healthcare environments.

    Background: The importance of effective briefing has been emphasised in many research studies during the past two decades. However, there is no developed instrument for auditing the content and quality of the documents, which makes this paper interesting.

    Methods: The study had a methodological and developmental design based on an established methodology for instrument development and validation. The development process consisted of three main phases: item generation and scale construction, assessment of face and content validity, and finally, testing of the reliability. To obtain face and content validity, expert panels reviewed the CQB-I. Content validity was assessed by using the Content Validity Index (I-CVI=item level, S-CVI=scale level). The reliability was tested by test-retest and inter-rater reliability. Results: CQB-I was found to have good content validity (I-CVI =0.78 – 1.0 and S-CVI=0.98). Inter-rater reliability was acceptable (Spearman’s correlation = 0.62) and the stability was considered high for both raters (83% respectively 88%).

    Conclusions: The instrument can be used as a guide for the work process in the design team and contribute to the ongoing development of making the design process more user-oriented with the ultimate goal of healthcare environments designed for a patient-centered care.

  • 5.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Att leva med diabetes typ 1: En litteraturöversikt om erfarenheter, upplevelser och viktiga aspekter i livet2013In: Nationella Diabetesregistret Årsrapport 2012 års resultat, ISSN 2001-2632, p. 130-141Article, review/survey (Other academic)
  • 6.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet, Sahlgrenska akademin, Institutionen för medicin.
    Capability Approach2013Conference paper (Other academic)
  • 7.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Patientrapporterat utfallsmått (PROM) i NDR – vad händer?2015In: Diabetesvård, ISSN 1652-697X, no 4, p. 38-38Article in journal (Other (popular science, discussion, etc.))
  • 8.
    Svedbo Engström, Maria
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet, Sahlgrenska akademin, Institutionen för medicin.
    Utveckling av en ny PROM-enkät – hur långt har vi kommit?2014In: Nationella Diabetesregistret - Årsrapport 2013 års resultat, ISSN 2001-2632, p. 36-39Article in journal (Other academic)
  • 9.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Gudbjörnsdottir, Soffia
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Amsberg, Susanne
    The Patient Perspective of Diabetes Care in Sweden: Adding PROM and PREM to the National Diabetes Register2012In: The 5th Diabetes Nursing Research Ph.d and Post doc conference, Bergen, Norge, 2012Conference paper (Refereed)
  • 10.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Gudbjörnsdottir, Soffia
    Patientrapporterade mått och Nationella Diabetesregistret2012In: SFSD (Svensk Förening för Sjuksköterskor i Diabetesvård) Symposium, Stockholm, 2012Conference paper (Refereed)
  • 11.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. University of Gothenburg, Sahlgrenska Academy.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Borg, Sixten
    Palaszewski, Bo
    Franzén, Stefan
    Gudbjörnsdottir, Soffia
    Eeg-Olofsson, Katarina
    Health-related quality of life and glycaemic control among adults with type 1 and type 2 diabetes: a nationwide cross-sectional study2019In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 17, no 1, article id 141Article in journal (Refereed)
    Abstract [en]

    Background: Health-related quality of life and glycaemic control are some of the central outcomes in clinical diabetes care and research. The purpose of this study was to describe the health-related quality of life and assess its association with glycaemic control in adults with type 1 and type 2 diabetes in a nationwide setting.

    Methods: In this cross-sectional survey, people with type 1 (n = 2479) and type 2 diabetes (n = 2469) were selected at random without replacement from the Swedish National Diabetes Register. Eligibility criteria were being aged 18–80 years with at least one registered test of glycated haemoglobin (HbA1c) the last 12 months. The generic 36- item Short Form version 2 (SF-36v2) was answered by 1373 (55.4%) people with type 1 diabetes and 1353 (54.8%) with type 2 diabetes.

    Results: Correlation analyses showed weak correlations between scores on the SF-36v2 and glycaemic control for both diabetes types. After the participants were divided into three groups based on their levels of HbA1c, multivariate regression analyses adjusted for demographics, other risk factors and diabetes complications showed that among participants with type 1 diabetes, the high-risk group (≥70 mmol/mol/8.6%) had statistically significantly lower means in five out of eight domains of the SF-36v2 and the mental component summary measure, as compared with the well-controlled group (< 52 mmol/mol/6.9%). Among the participants with type 2 diabetes, the high-risk group had the lowest statistically significantly means in seven domains and both summary measures.

    Conclusions: Among people with type 1 and type 2 diabetes, adults with high-risk HbA1c levels have lower levels of health-related quality of life in most but not all domains of the SF-36v2. This finding was not explained by demographics, other risk factors, or diabetes complications. The weak individual-level correlations between HRQOL scores and levels of glycaemic control argues for the need to not focus exclusively on either HbA1c levels or HRQOL scores but rather on both because both are important parts of a complex, life-long, challenging condition.

  • 12.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala universitet.
    Johansson, Unn-Britt
    Eeg-Olofsson, Katarina
    Borg, Sixten
    Palaszewski, Bo
    Gudbjörnsdottir, Soffia
    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.2017In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 1, p. 139-146Article in journal (Refereed)
    Abstract [en]

    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.

  • 13.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet, Sahlgrenska akademin, Institutionen för medicin.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Sophiahemmet högskola.
    Gudbjörnsdottir, Soffia
    Göteborgs universitet.
    Applying the Capability Approach when developing Patient ReportedOutcome Measures (PROMs) for the Swedish National Diabetes Register2014Conference paper (Other academic)
  • 14.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Gudbjörnsdottir, Soffia
    Development of a patient reported outcome measure for the Swedish National Diabetes Register2015Conference paper (Refereed)
  • 15.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs Universitet.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala Universitet.
    Johansson, Unn-Britt
    Sophiahemmet Högskola och Karolinska institutet.
    Gudbjörnsdottir, Soffia
    Nationella Diabetesregistret (NDR), Registercentrum Västra Götaland och Göteborgs Universitet.
    En ny enkät för Nationella Diabetesregistret (NDR) speglar patientens perspektiv2015Conference paper (Refereed)
  • 16.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Gudbjörnsdottir, Soffia
    Experiences of living with diabetes and experiences of diabetes care as a basis for a tailored patient reported outcome measure for the Swedish National Diabetes Register2015Conference paper (Refereed)
  • 17.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet, Sahlgrenska akademin, Institutionen för medicin.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala universitet.
    Johansson, Unn-Britt
    Sophiahemmet högskola.
    Gudbjörnsdottir, Soffia
    Göteborgs universitet, Sahlgrenska akademin, institutionen för medicin.
    Patienternas medverkan för att utveckla patientrapporterade utfallsmått för Nationella Diabetesregistret2013Conference paper (Refereed)
  • 18.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet, Sahlgrenska akademin, Institutionen för medicin.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Sophiahemmet högskola.
    Gudbjörnsdottir, Soffia
    Göteborgs universitet.
    Utveckling av patientrapporterade utfallsmått (PROM) för Nationella Diabetesregistret2014Conference paper (Refereed)
  • 19.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Johansson, Unn-Britt
    Sophiahemmet högskola.
    Gudbjörnsdottir, Soffia
    Göteborgs universitet.
    Utveckling av patientrapporterade utfallsmått (PROM) för NDR. I: Nationella Diabetesregistret - Årsrapport 2012 års resultat2013Other (Other (popular science, discussion, etc.))
  • 20.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala Universitet.
    Johansson, Unn-Britt
    Sophiahemmet Högskola och Karolinska institutet.
    Gudbjörnsdottir, Soffia
    Nationella Diabetesregistret (NDR), Registercentrum Västra Götaland och Göteborgs Universitet.
    Vägen mot en ny version av PROM för Nationella Diabetesregistret (NDR)2015Conference paper (Refereed)
  • 21.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet.
    Leksell, Janeth
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala universitet.
    Johansson, Unn-Britt
    Gudbjörnsdottir, Soffia
    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 Register2016In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 6, no 3, article id e010249Article in journal (Refereed)
    Abstract [en]

    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 (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) 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.

  • 22.
    Svedbo Engström, Maria
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Wijk, Helle
    Elf, Marie
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Evidence-based briefing for sustainable healthcare environments2011In: World Sustainable Building Conference SB11, Helsinki, 2011Conference paper (Refereed)
    Abstract [en]

    The aim of the study was to survey the evidence-based information in initial briefs for healthcare environments. The focus was on the initial brief, when the aim is foremost to express design requirements and specifications from the user’s point of view. The study audit 29 briefs by using a new developed instrument to examine the content and quality of information in briefs (CQB-I) (Content and Quality of Briefs Instrument), a new developed and tested instrument. The rationale behind the study is that the brief is one important outcome of a design process that has not been studied as much as necessary. Despite the stated importance of a well developed brief, there exist few studies of the content and quality of the briefs created in design process of new healthcare spaces. The use of Evidence-Based Design (EBD) to support designers to make decisions based on available knowledge about the impact of design solutions on people, costs and management has been addressed recently. Briefing (programming) should enable the communication of the end user’s need into design requirements and thus it is of utmost importance that this is communicated through a brief. The brief should also be a significant base for expressed outcomes for a building performance evaluation. The analysis showed that a majority of the briefs included some kind of evidence-based information. Though, in most of them the information was very sporadic and the information mainly addresses local statistics such as of the number of patients, beds, personnel, and length of stay. There were only two briefs that contain evidence-based information throughout the entire brief.

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