| 1. |
- Orwelius, Lotti, et al.
(författare)
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The Swedish RAND-36 Health Survey - reliability and responsiveness assessed in patient populations using Svensson's method for paired ordinal data.
- 2018
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Ingår i: Journal of patient-reported outcomes. - : Springer Publishing Company. - 2509-8020. ; 2:4
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Tidskriftsartikel (refereegranskat)abstract
- Background: The Short Form 36-Item Survey is one of the most commonly used instruments for assessing health-related quality of life. Two identical versions of the original instrument are currently available: the public domain, license free RAND-36 and the commercial SF-36.RAND-36 is not available in Swedish. The purpose of this study was threefold: to translate and culturally adapt the RAND-36 into Swedish; to evaluate its reliability and responsiveness using Svensson's method for paired ordered categorical data; and to assess the usability of an electronic version of the questionnaire.The translation process included forward and backward translations and reconciliation. Test-retest reliability was examined during a period of two-weeks in 84 patients undergoing dialysis for chronic kidney disease. Responsiveness was examined in 97 patients before and 2 months after a cardiac rehabilitation program. Usability tests and cognitive debriefing of the electronic questionnaire were carried out with 18 patients.Results: The Swedish translation of the RAND-36 was conceptually equivalent to the English version. Test-retest reliability was supported by non-significant relative position (RP) values among dialysis patients for all RAND-36 subscales (range - 0.02 to 0.10; all confidence intervals (CI) included zero). Responsiveness was demonstrated by significant improvements in RP values among cardiac rehabilitation patients for all subscales (range 0.22-0.36; lower limits of all CI > 0.1) except two subscales (General health, RP -0.02; CI -0.13 to 0.10; and Role functioning/emotional, RP 0.03; CI -0.09 to 0.16). In cardiac rehabilitation patients, sizable individual variation (RV > 0.2) was also shown for the Pain, Energy/fatigue and Social functioning subscales.The electronic version of RAND-36 was found easy and intuitive to use.Conclusions: Our results provide evidence supporting the reliability and responsiveness of the newly translated Swedish RAND-36 and the user-friendliness of the electronic version. Svensson's method for paired ordinal data was able to characterize not only the direction and size of differences among the patients' responses at different time points but also variations in response patterns within groups. The method is therefore, besides being suitable for ordinal data, also an important and novel tool for gaining insights into patients' response patterns to treatment or interventions, thus informing individualized care.
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| 2. |
- Qvarfordt, Maria, 1982-, et al.
(författare)
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Health Care Professionals' Experiences in Telerehabilitation : Qualitative Content Analysis
- 2023
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Ingår i: JMIR Human Factors. - : JMIR Publications. - 2292-9495. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: The use of digital communication in Swedish health care has increased in an effort to make health care more accessible. At the organizational level, trust in digitalization has stabilized, but a certain degree of skepticism regarding technology appears to exist among health care employees.Objective: This study aimed to explore health care professionals' (HCPs) experiences of digital communication with patients and colleagues in a habilitation context.Methods: Qualitative content analysis was used to analyze data derived from individual interviews.Results: The results revealed that there were mixed feelings regarding the digital format used at the habilitation center. Although some skepticism remained regarding the digital format, there seemed to be a parallel understanding of the motives and benefits of digitalization. Hence, positive aspects, such as increased health care accessibility, were identified. However, emphasis was placed on the considerations required to make digital consultations appropriate for each patient.Conclusions: Managing a workday influenced by the balance between digital and physical demands forces HCPs to adjust to the digital format and new ways of working. This requires HCPs to consider whether digital means are appropriate for communication in individual patient-specific cases.
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| 3. |
- Rahman Jabin, MD Shafiqur, et al.
(författare)
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Digital Health Testbeds in Sweden : An exploratory study
- 2022
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Ingår i: Digital Health. - : Sage Publications. - 2055-2076. ; 8, s. 1-21
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Tidskriftsartikel (refereegranskat)abstract
- Objective: This study explored the Swedish digital health testbeds through the lens of complexity science.Methods: The purposive sampling was used to identify 38 digital health testbed organizations to conduct interviews in written or audio-conferencing. The interview responses were aggregated and analyzed using thematic analysis. The themes were mainly generated through complexity theory and the principles of complex adaptive systems.Results: Fifteen testbed organizations responded, comprising 13 written responses and two audio-conferencing. Five maintheoretical themes were generated: agents and diversity, connections and communication, adaptation and learning, perturbations,and path dependence. Agents and diversity depicted different types of testbeds, stakeholders and innovation, and the primary function and purpose of the testbeds. Various factors enhancing connections and communications among multiple stakeholders were identified, such as the quality of e-health solutions and the 2030 Agenda for Sustainable Development. Some adaptation and learning factors, such as internal reorganization, sharing and creating learning opportunities, and additional funding, guaranteed the sustainability of testbeds. Perturbations were characterized by two factors: non-linear interactions – lack of commitment and transparency in stakeholders’ engagement, and uncertainty about testbed definitions and concepts. Path dependence highlighted the importance of history, such as previous positive and negative experiences.Conclusion: This study provided insights into testbeds’ organization, their functions, how various aspects were challenged,and how they adapted to overcome and improve the system issues. Identifying the stakeholders and relevant factors, commissioning an evaluation, backing up with a contingency plan, securing adequate funding, and disseminating the findings can improve the testbeds’ design and implementation.
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| 4. |
- Thörnqvist, Victoria, et al.
(författare)
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Health-related quality of life worsens by school age amongst children with food allergy
- 2019
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Ingår i: Clinical and Translational Allergy. - : BMC. - 2045-7022 .- 2045-7022. ; 9
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: Food allergy is negatively associated with health-related quality of life (HRQL). Although differences exist between parents and children, less is known about age-specific differences amongst children. As such, we aimed to identify if age, as well as other factors, are associated with food allergy-specific HRQL in an objectively defined population of children. Methods: Overall, 63 children (boys: n = 36; 57.1%) with specialist-diagnosed food allergy to 1 + foods were included. Parents/guardians completed the Swedish version of a disease-specific questionnaire designed to assess overall-and domain-specific HRQL. Descriptive statistics and linear regression were used. Results: The most common food allergy was hens egg (n = 40/63; 63.5%). Most children had more than one food allergy (n = 48; 76.2%). Nearly all had experienced mild symptoms (e.g. skin; n = 56/63; 94.9%), and more than half had severe symptoms (e.g. respiratory; 39/63; 66.1%). Compared to young children (0-5 years), older children (6-12 years) had worse HRQL (e.g. overall HRQL: B = 0.60; 95% CI 0.05-1.16; p amp;lt; 0.04.). Similarly, multiple food allergies, and severe symptoms were significantly associated with worse HRQL (all p amp;lt; 0.05) even in models adjusted for concomitant allergic disease. No associations were found for gender or socioeconomic status. Conclusion: Older children and those with severe food allergy have worse HRQL.
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| 5. |
- Wai, Hay Mar, et al.
(författare)
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Pediatric food allergy-related household costs are influenced by age, but not disease severity
- 2019
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Ingår i: World Allergy Organization Journal. - : ELSEVIER. - 1939-4551. ; 12:9
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The economic burden of food allergy on households is poorly understood. We evaluated the household costs associated with specialist-diagnosed pediatric food allergy, with focus on age and disease severity. Study design: A cross-sectional study of 70 Swedish case-control pairs (59% boys) was conducted using Food Allergy Economic questionnaire. Household costs were analyzed between age- and gender-matched cases (children aged 0-17 years, with specialist-diagnosed food allergy) and controls (non-food allergic households). Results: Parents were predominantly university-educated and employed full-time. Most cases had parent-reported previous anaphylaxis. Mean total annual household costs were comparable between cases and controls. However, compared to controls, cases had significantly higher direct medical-, and non-medical related costs; higher indirect medical-related costs, and higher intangible costs (all p amp;lt; 0.05). In a sensitivity analyses of only cases aged 0-12 years, direct household costs, including lost earnings due to childs hospitalization, were significantly higher than controls. Results from only children with severe disease paralleled those of all cases vs. controls. Conclusions: Although pediatric food allergy is not associated with higher total annual household costs, these households have significantly higher direct medical-related, indirect and intangible costs vs. non-food allergic households. Higher household costs were identified amongst younger children, but not disease severity.
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| 6. |
- Blomqvist, Ida, et al.
(författare)
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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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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 5:1
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Tidskriftsartikel (refereegranskat)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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| 7. |
- Borges Luz, Tatiana, et al.
(författare)
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Primary Data Collection for Drug Utilization Research
- 2016
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Ingår i: Drug Utilization Research - Methods and Applications. - Chichester, West Sussex : Wiley-Blackwell. - 9781118949788 ; , s. 29-38
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Bokkapitel (refereegranskat)
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| 8. |
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| 9. |
- Chaplin, John, et al.
(författare)
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Translation and cross-cultural adaptation of ten pediatric PROMIS (R) item banks into Swedish
- 2020
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Ingår i: Quality of Life Research. - : Springer. - 0962-9343 .- 1573-2649. ; 29:Suppl. 1, s. S175-S176
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Aims: We describe the first large-scale translation and cross-cultural adaptation into Swedish of ten pediatric PROMIS item banks: Anger (9-items), Anxiety (15-items), Depressive symptoms (14-items) ,Cognitive function (43-items), Family relationships (47-items), Fatigue (25-items), Pain interference (20-items), Peer relationships (15-items), Physical activity (10-items), Positive affect (38-items) and Profile-25.Methods: ISPOR recommendations were followed. There view was carried out in multi-professional small groups of twelve health-related quality-of-life researchers, pediatric clinicians and linguists from different geographical regions in a two-day workshop. Cross-cultural comparisons were made to identify problems and to produce a consensus-derived version, which was then back translated, evaluated, and revised where necessary. Prior translations and review of version 1 of the item-banks were utilized (4 item-banks). There viewed item-banks were presented in four sessions of cognitive debriefings over 2 years with twenty-two young people (8-18 years) in three dialectically different regions of Sweden before finalization.Results: One hundred and seventy-five items were translated. All item banks had translation issues to be resolved. Sixty-six items (38%) needed resolution at the cognitive debriefing stage, the majority of issues were in the area of unclear definitions in the English items (35 items), followed by language and cultural differences (16 issues) and age appropriate language (14 items). The cultural issues identified were 1) identifying suitable word alternative to match the English where Swedish lacked the volume of words to choose from; 2) adjectival agreement on intensity levels of the concept to be translated; 3) culturally specific idiomatic phrases; 4) use of linguistically specific homonyms in English that did not match Swedish word usage; 5) cultural differences in describing members of the family unit and the family unit itself.Conclusion: The Swedish translations of ten PROMIS Pediatric item banks and Profile-25 were rigorously translated using internationally standardized methods. Close consideration of the translations, and multiple translations helped to ensure conceptual equivalence and comprehensibility. The banks are culturally adapted and appropriate for the age range 8 to 18 years. They can be used for clinical trials and routine pediatric health care.
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| 10. |
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