| 1. |
- Adolfsson, Peter, et al.
(author)
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Education and individualized support regarding exercise and diabetes improves glucose control and level of physical activity in type 1 diabetes individuals
- 2015
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In: Journal of Endocrinology Diabetes & Obesity. - : JSciMed Central. - 2333-6692. ; 3:2, s. 1071-1077
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Journal article (peer-reviewed)abstract
- Background: Physical activity is advocated in all individuals with diabetes. However, good glycemic control can be difficult to achieve due to exercise induced glucose excursions.Objective: To evaluate the impact on glucose control of a structured diabetes education concerning physical activity, delivered via the web/internet together with telemedical care (individualized feedback by phone).Methods: Eighty-two individuals with type 1 (T1D) were included in the pre-race intervention and randomized into two groups: intervention (I) (n=48) and control (C) (n=48). Both groups received web-based training of sports and nutrition in relation to diabetes. The intervention group also received structured and individualized feedback on two different occasions. HbA1c was measured at baseline, after 3 and 6 months when a 45 km cross-country skiing race (the HalvVasa) was performed. Only the individuals attending the skiing race were eligible to be included in the study. Level of Physical Activity (LPA), Multidimensional Health Locus of Control (MHLC) and Confidence In Diabetes Self-care (CIDS) were assessed at baseline and after 7 months.Results: HbA1c at start was 58.5 ± 10.0 (I) respectively 60.7 ± 9.5 (C) mmol/mol. At 3 months 56.7 ± 8.7 (I) respectively 61.0 ± 9.6 (C) mmol/mol and at 6 months 55.7 ± 8.1 (I) respectively 60.3 ± 9.7 (C) mmol/mol. A significant in (I) at 3 months: 2.2 ± 3.8 mmol/mol (0.7-3.7, 95% CI), (p<0.05) and after 6 months: 2.8 ± 5.5 mmol/mol (0.5-5.0, 95% CI), (p<0.05). No reduction was seen in (C). However between the two groups no difference was noted. The LPA was increased in 52% of the participants in (I) respectively 7% in (C), a significant difference, p<0.05. No differences were seen regarding HbA1c or LPA in the control group.Conclusion: Education and individualized feedback, delivered via telemedicine, to physical active individuals with T1D resulted in improvements in glycemic control within the intervention group and improved level of physical activity and locus of control when compared to the control group(12) (PDF) Education and individualized support regarding exercise and diabetes improves glucose control and level of physical activity in type 1 diabetes individuals.
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| 2. |
- Algurén, Beatrix, 1977, et al.
(author)
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Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process
- 2021
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In: Archives of Disease in Childhood. - : BMJ. - 0003-9888 .- 1468-2044. ; 106:9, s. 868-876
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Journal article (peer-reviewed)abstract
- Objective To develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for all children and adolescents regardless of health condition. Design A modified Delphi process. Setting The International Consortium for Health Outcomes Measurement convened an international Working Group (WG) comprised of 23 international experts from 12 countries in the field of paediatrics, family medicine, psychometrics as well as patient advisors. The WG participated in 11 video-conferences, through a modified Delphi process and 9 surveys between March 2018 and January 2020 consensus was reached on a final recommended health outcome standard set. By a literature review conducted in March 2018, 1136 articles were screened for clinician and patient-reported or proxy-reported outcomes. Further, 4315 clinical trials and 12 paediatric health surveys were scanned. Between November 2019 and January 2020, the final standard set was endorsed by a patient validation (n=270) and a health professional (n=51) survey. Results From a total of 63 identified outcomes, consensus was formed on a standard set of outcome measures that comprises 10 patient-reported outcomes, 5 clinician-reported measures, and 6 case-mix variables. The four developmental age-specific packages (ie, 0–5, 6–12, 13–17, 18–24 years) include either five or six measures with an average time for completion of 20min. Conclusions The OPH-SS is a starting point to drive value-based paediatric healthcare delivery from a global perspective for enhancing child and adolescent physical health and psychosocial well-being.
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| 3. |
- Algurén, Beatrix, 1977, et al.
(author)
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PROMIS - så kan vi dokumentera individens behov på ett tillförlitligt sätt i journalsystem
- 2019
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In: Vitalis - Nordens ledande eHälsomöte.
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Conference paper (other academic/artistic)abstract
- Personcentrering är bland annat kännetecken av en högkvalitativ vård och omsorg som innebär att individens perspektiv lyfts och gör individen till medskaparen av sin egen vård och omsorg. Medan det finns objektiva utrustning och mätningar som professionerna använder, så är det svårare att fånga standardiserad individens egna upplevelse av sin hälso- och funktionstillstånd (i.e. patient-reported outcome). Inom socialtjänsten införs “individens behov i centrum” (IBIC) som bygger på WHO:s klassifikationen av funktionstillstånd, funktionshinder och häsla (ICF) och ger en systematik och struktur för att utreda tillsammans med individen dess behov. Vidare rekommenderas att användas de så-kallade bedömningsfaktorer som liknar en 5 gradig Likert-skala för att fånga storleken av problemet (0 – 5 = inget, lätt, måttligt, svårt, totalt problem). Skalan är dock inte validerat. Däremot är PROMIS – Patient-Reported Outcomes Measurement Information System – ett system som är utvecklat och validerat för att mäta livsdomäner med goda psykometriska egenskaper som tillåter valida individuella jämförelse över tid men också mellan olika individer och patientgrupper. Urvalet av frågorna är inte kopplat till ett instrument utan skalorna kan anpassas beroende på behovet. Vidare finns det tekniska lösningar för integrering av PROMIS i journalsystem (computer-assistive technology). Exempel ges av de olika PROMIS skalor i relation till ICFs domäner.
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| 4. |
- Alonso, Jordi, et al.
(author)
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The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative.
- 2013
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In: Health and quality of life outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 11
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Journal article (peer-reviewed)abstract
- Patient-reported outcomes (PROs) play an increasingly important role in clinical practice and research. Modern psychometric methods such as item response theory (IRT) enable the creation of item banks that support fixed-length forms as well as computerized adaptive testing (CAT), often resulting in improved measurement precision and responsiveness. Here we describe and discuss the case for developing an international core set of PROs building from the US PROMIS® network.PROMIS is a U.S.-based cooperative group of research sites and centers of excellence convened to develop and standardize PRO measures across studies and settings. If extended to a global collaboration, PROMIS has the potential to transform PRO measurement by creating a shared, unifying terminology and metric for reporting of common symptoms and functional life domains. Extending a common set of standardized PRO measures to the international community offers great potential for improving patient-centered research, clinical trials reporting, population monitoring, and health care worldwide. Benefits of such standardization include the possibility of: international syntheses (such as meta-analyses) of research findings; international population monitoring and policy development; health services administrators and planners access to relevant information on the populations they serve; better assessment and monitoring of patients by providers; and improved shared decision making.The goal of the current PROMIS International initiative is to ensure that item banks are translated and culturally adapted for use in adults and children in as many countries as possible. The process includes 3 key steps: translation/cultural adaptation, calibration, and validation. A universal translation, an approach focusing on commonalities, rather than differences across versions developed in regions or countries speaking the same language, is proposed to ensure conceptual equivalence for all items. International item calibration using nationally representative samples of adults and children within countries is essential to demonstrate that all items possess expected strong measurement properties. Finally, it is important to demonstrate that the PROMIS measures are valid, reliable and responsive to change when used in an international context.IRT item banking will allow for tailoring within countries and facilitate growth and evolution of PROs through contributions from the international measurement community. A number of opportunities and challenges of international development of PROs item banks are discussed.
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| 5. |
- Altavilla, A., et al.
(author)
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Impact of the new european paediatric regulatory framework on ethics committees: overview and perspectives
- 2012
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In: Acta Paediatrica. - : Wiley. - 1651-2227 .- 0803-5253. ; 101:1
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Journal article (peer-reviewed)abstract
- Aim: To evaluate the impact of the new European paediatric regulatory framework on the activities of Ethics Committees operating in Europe and to assess their involvement and interest in paediatric research. Methods: Task-force in Europe for Drug Development for the Young Network of Excellence and Relating Expectations and Needs to the Participation and Empowerment of Children in Clinical Trials project set up an inventory of Ethics Committees existing in Europe and conducted a survey on their approach to paediatric trials. Results: Ethics Committees operating in 22 European Countries participated in this survey. Results showed a high lack of knowledge, understanding and awareness of the current European paediatric regulatory framework and a lack of involvement of Ethics Committees in paediatric research, especially in terms of training and education, demonstrated also by the decreasing number of Ethics Committees answering exhaustively to the whole questionnaire. The majority of participating Ethics Committees expressed interest in future initiatives related to paediatric research. Conclusions: Despite a limited knowledge and understanding of the current paediatric regulatory framework, a significant number of Ethics Committees operating in Europe show interest in initiatives related to paediatric research. Networking may be an essential tool to be used to enhance Ethics Committees role in supporting paediatric research. Any initiative should be undertaken at European level in collaboration with European Union Institutions.
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| 6. |
- Andersson, Klara, et al.
(author)
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Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
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In: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
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Journal article (peer-reviewed)abstract
- Objectives: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. Methods: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. Results: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme “It is a fight to be appreciated as a person and member of society” illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. Conclusions: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable. © 2020 Elsevier Inc.
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| 7. |
- Andersson, Klara, et al.
(author)
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Perceived stigma in adults with epilepsy in Sweden and associations with country of birth, socioeconomic status, and mental health
- 2022
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In: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050. ; 136
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Journal article (peer-reviewed)abstract
- Background: Stigma contributes to negative health outcomes and amplifies health disparities in epilepsy. This study aimed to investigate associations of perceived stigma with the country of birth and socioeco-nomic status (SES). Methods: This is a cross-sectional questionnaire study. Participants were recruited consecutively from three demographically different neurology outpatient clinics in the southwest of Sweden. Participants responded to a questionnaire concerning their epilepsy, country of birth, mother tongue, and different SES-variables. The Neuro-QOL stigma scale and the Jacoby stigma scale were applied to assess stigma and the Hospital Anxiety and Depression Scale (HADS) and PROMIS Mental Health scale were applied to assess mental health. Results: In total 161 adults with epilepsy were included in the cohort. The median Neuro-QOL stigma score was 48.3, and was higher among foreign-born than in native-born participants (foreign-born in non-European country 52.3, in other European country 49.8, and in native-born 47.0, p = 0.003). Other factors associated with Neuro-QOL were seizure frequency last year (>= 2 seizures 52.4 compared to 1 sei-zure 50.9 and no seizures 44.3, p < 0.001), having had seizures in public (yes 50.9 compared to no 44.7, p = 0.035), HADS depression score >= 11 (57.4 compared to 47.8 for score <11 points, p < 0.001), HADS anx-iety score >= 11 (53.5 compared to 46.8 for score <11 points, p < 0.001), and lower PROMIS Mental Health score (42.9 for PROMIS < 40 compared to 54.4 for PROMIS > 60, p < 0.01). A stepwise multiple regression analysis indicated that having had seizures the last year increased the average Neuro-QOL stigma score with 5.89 and appeared as the most determining factor for the Neuro-QOL stigma score among the vari-ables investigated. Conclusions: It is important that the concerns of foreign-born patients are acknowledged and that the focus of seizure control and the detection and treatment of comorbidities are prioritized in the manage-ment of epilepsy and perceived stigma. (c) 2022 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).
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| 8. |
- Andersson, Klara, et al.
(author)
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Socioeconomic outcome and access to care in adults with epilepsy in Sweden: A nationwide cohort study.
- 2020
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In: Seizure. - : Elsevier BV. - 1532-2688 .- 1059-1311. ; 74, s. 71-76
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Journal article (peer-reviewed)abstract
- Epilepsy has well-documented associations with low income and low education levels, but the impact of a patient's socioeconomic standing (SES) on the effects of epilepsy have been less studied.We performed a register-based cross-sectional study and asked if SES was associated with more severe epilepsy or limited access to care in Sweden, where health care is universal, and if socioeconomic outcomes (employment and income) differed for persons with epilepsy (PWE) with different levels of educational attainment. The study cohort consisted of all adult patients with an epilepsy diagnosis in the Swedish patient register in 2000-2015 (n = 126,406) and controls (n = 379,131) matched for age, gender, and place of birth.Somatic and psychiatric comorbidities were more common in PWE, while education and income levels were lower. Among PWE, hospitalizations were more common in persons with lower income or education. Having at least one prescription written by a neurologist in the study period was more common in the high-income and high-education groups. Finally, although low educational attainment was associated with low levels of income and inversely associated with employment in both persons with epilepsy and controls, regression analyses demonstrated that these associations were much more noticeable in cases than controls.We conclude that both the severity and consequences of epilepsy are greater in persons of low SES, even in a country with universal health care. This indicates that universal access may not be sufficient to mitigate socioeconomic inequity in epilepsy.
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| 9. |
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| 10. |
- Blomqvist, Ida, et al.
(author)
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Swedish translation and cross-cultural adaptation of eight pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)(R)
- 2021
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In: Journal of Patient-Reported Outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 5:1
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Journal article (peer-reviewed)abstract
- Background This study is part of the Swedish initiative for the establishment of standardized, modern patient-reported measures for national use in Swedish healthcare. The goal was to translate and culturally adapt eight pediatric Patient-Reported Outcomes Measurement Information System (PROMIS(R)) item banks (anger, anxiety, depressive symptoms, family relationships, fatigue, pain interference, peer relationships and physical activity) into Swedish. Methods Authorization to translate all currently available pediatric PROMIS item banks (autumn, 2016) into Swedish was obtained from the PROMIS Health Organization. The translation followed the Functional Assessment of Chronic Illness Therapy translation recommendations with one major modification, which was the use of a bilingual multi-professional review workshop. The following steps were applied: translation, reconciliation, a two-day multi professional reviewer workshop, back translation, and cognitive debriefing with eleven children (8-17 years) before final review. The bilingual multi-professional review workshop provided a simultaneous, in-depth assessment from different professionals. The group consisted of questionnaire design experts, researchers experienced in using patient-reported measures in healthcare, linguists, and pediatric healthcare professionals. Results All item banks had translation issues that needed to be resolved. Twenty-four items (20.7%) needed resolution at the final review stage after cognitive debriefing. The issues with translations included 1. Lack of matching definitions with items across languages (6 items); 2. Problems related to language, vocabulary, and cultural differences (6 items); and 3. Difficulties in adaptation to age-appropriate language (12 items). Conclusions The translated and adapted versions of the eight Swedish pediatric PROMIS item banks are linguistically acceptable. The next stage will be cross-cultural validation studies in Sweden. Despite the fact that there are cultural differences between Sweden and the United States, our translation processes have successfully managed to address all issues. Expert review groups from already-established networks and processes regarding pediatric healthcare throughout the country will facilitate the future implementation of pediatric PROMIS item banks in Sweden.
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