| 1. |
- Eldh, Ann Catrine, et al.
(author)
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Assessing and reporting patient participation by means of patient preferences and experiences
- 2020
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In: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 20:1
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Journal article (peer-reviewed)abstract
- BACKGROUND: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation.METHODS: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested.RESULTS: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures.CONCLUSIONS: Ways to easily acquaint stakeholders with patients' preferences for patient participation are needed, in order for healthcare staff to better use resources to match the basic requirements of individuals and groups. While the 4Ps can guide professionals to patient participation as framed in legislations, concept analyses and by patients, a visualisation of the results is needed to capture preference-based patient participation. The proposed route to representing degree of match in preferences and experiences may also be relevant to other dimensions of quality of healthcare.
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| 2. |
- Lovén Wickman, Ulrica, 1966-, et al.
(author)
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Development of a self-care questionnaire for clinical assessment of self-care in patients with inflammatory bowel disease : A psychometric evaluation.
- 2019
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In: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 89, s. 1-7
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Journal article (peer-reviewed)abstract
- BACKGROUND: Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care in patients with inflammatory bowel disease could allow targeted support and education by health care professionals. There are no existing measures assessing self-care in patients with inflammatory bowel disease.OBJECTIVES: The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease.METHODS: Qualitative and quantitative methods were used to develop the inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease (n = 20), (2) content validation in a panel of experts (n = 6) and patients (n = 100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n = 93) with test-retest evaluation (n = 50). An expert review group of three nurses and one physician continuously discussed the result during the development process.RESULTS: A total of 91 patients with Crohn's disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one.CONCLUSION: An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care.
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| 3. |
- Orwelius, Lotti, et al.
(author)
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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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In: Journal of Patient-Reported Outcomes. - : Springer Publishing Company. - 2509-8020. ; 2:4
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Journal article (peer-reviewed)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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| 4. |
- Pergert, Pernilla, et al.
(author)
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Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments
- 2018
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In: BMC Medical Ethics. - : BIOMED CENTRAL LTD. - 1472-6939. ; 19
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Journal article (peer-reviewed)abstract
- Background: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. Methods: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from almost never true to almost always true; while the Swedish HECS labels range from never to always. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. Results: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected never and always. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word respect was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients wishes implied always complying with them. Conclusions: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.
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| 5. |
- Pihl Lesnovska, Katarina, et al.
(author)
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The quality of care questionnaire: development of a valid measure for persons with inflammatory bowel disease
- 2018
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In: Scandinavian Journal of Gastroenterology. - : TAYLOR & FRANCIS LTD. - 0036-5521 .- 1502-7708. ; 53:9, s. 1043-1050
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Journal article (peer-reviewed)abstract
- Background and aims: Quality of care is important in lifelong illnesses such as inflammatory bowel disease (IBD). Valid, reliable and short questionnaires to measure quality of care among persons with IBD are needed. The aim of this study was to develop a patient-derived questionnaire measuring quality of care in persons with IBD.Methods and results: The development of the questionnaire The Quality of Care -Questionnaire (QoC-Q) was based on a literature review of studies measuring quality of care, and the results of two qualitative studies aiming to identify the knowledge need and perception of health care among persons with IBD. Further development and evaluation was done by focus groups, individual testing and cognitive interviews with persons with IBD, as well as evaluation by a group of professionals. After the development, the questionnaire was tested for validity and test-retest reliability in 294 persons with IBD.Conclusions: The QoC-Q is showing promising validity and reliability for measuring the subjective perception of quality of care. Further testing in clinical practice is suggested to assess if the QoC-Q can be used to evaluate care and areas of improvement in health care for persons living with IBD.
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| 6. |
- Schonlau, Matthias, et al.
(author)
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Automatic Classification of Open-Ended Questions: Check-All-That-Apply Questions
- 2021
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In: Social science computer review. - : Sage Publications. - 0894-4393 .- 1552-8286. ; 36:4, s. 562-572
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Journal article (peer-reviewed)abstract
- Text data from open-ended questions in surveys are challenging to analyze and are often ignored. Open-ended questions are important though because they do not constrain respondents answers. Where open-ended questions are necessary, often human coders manually code answers. When data sets are large, it is impractical or too costly to manually code all answer texts. Instead, text answers can be converted into numerical variables, and a statistical/machine learning algorithm can be trained on a subset of manually coded data. This statistical model is then used to predict the codes of the remainder. We consider open-ended questions where the answers are coded into multiple labels (all-that-apply questions). For example, in the open-ended question in our Happy example respondents are explicitly told they may list multiple things that make them happy. Algorithms for multilabel data take into account the correlation among the answer codes and may therefore give better prediction results. For example, when giving examples of civil disobedience, respondents talking about "minor nonviolent offenses" were also likely to talk about "crimes." We compare the performance of two different multilabel algorithms (random k-labelsets [RAKEL], classifier chains [CC]) to the default method of binary relevance (BR) which applies single-label algorithms to each code separately. Performance is evaluated on data from three open-ended questions (Happy, Civil Disobedience, and Immigrant). We found weak bivariate label correlations in the Happy data (90th percentile: 7.6%), and stronger bivariate label correlations in the Civil Disobedience (90th percentile: 17.2%) and Immigrant (90th percentile: 19.2%) data. For the data with stronger correlations, we found both multilabel methods performed substantially better than BR using 0/1 loss ("at least one label is incorrect") and had little effect when using Hamming loss (average error). For data with weak label correlations, we found no difference in performance between multilabel methods and BR. We conclude that automatic classification of open-ended questions that allow multiple answers may benefit from using multilabel algorithms for 0/1 loss. The degree of correlations among the labels may be a useful prognostic tool.
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| 7. |
- Simmons, Johanna, 1980-, et al.
(author)
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Development and validation of REAGERA-P, a new questionnaire to evaluate health care provider preparedness to identify and manage elder abuse
- 2021
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In: BMC Health Services Research. - : BMC. - 1472-6963. ; 21:1
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Journal article (peer-reviewed)abstract
- BACKGROUND: Elder abuse is prevalent and associated with morbidity but often goes unnoticed in health care. Research on the health care response to victims calls for valid measurements. This article describes the development and validation of a questionnaire to evaluate health care provider preparedness to care for older adults subjected to abuse, the REAGERA-P (Responding to Elder Abuse in GERiAtric Care - Provider questionnaire).METHOD: REAGERA-P was developed in phase I. The questionnaire includes a case vignette, self-efficacy scales for identifying and managing elder abuse cases and cause for concern as well as organizational barriers when talking with older patients about abuse. Content validity was ensured by a review committee, and cognitive interviews were conducted to ensure face validity and to examine cognitive processes to ensure comprehension. REAGERA-P was then administered to health care providers (n = 154, response rate 99 %) to test for construct validity. Factor analysis was performed, and internal consistency was tested for the self-efficacy scales. Convergent validity was tested by investigating associations between relevant variables. Some items were revised in phase II, and new cognitive interviews were performed. Parts of the questionnaire were tested for responsiveness by administering it to medical interns (n = 31, response rate 80 %) before and after an educational intervention.RESULTS: REAGERA-P showed good content and face validity. The factor analysis revealed two factors: one for asking questions about abuse (Cronbach's α = 0.75) and one for managing the response to the questions (Cronbach's α = 0.87). Results suggest good convergent validity for the self-efficacy scales and for questions about cause for concern and organizational barriers. The responsiveness of the self-efficacy scales was good: the mean on the scale for asking questions (range 0-30) was 15.0 before the intervention and 21.5 afterwards, the mean on the scale for managing the response (range 0-50) was 22.4 before the intervention and 32.5 afterwards.CONCLUSION: REAGERA-P is a new questionnaire that can be used to evaluate health care provider preparedness to identify and manage cases of elder abuse, including educational interventions conducted among staff to improve health care responses to victims of elder abuse. This initial testing of the questionnaire indicates that the REAGERA-P has good validity.
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| 8. |
- Ståhl, Christian, et al.
(author)
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The Social Insurance Literacy Questionnaire (SILQ) : Development and Psychometric Evaluation
- 2023
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In: Journal of occupational rehabilitation. - : Springer. - 1053-0487 .- 1573-3688.
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Journal article (peer-reviewed)abstract
- PurposeFor clients to understand social insurance decisions and processes, information from authorities needs to be comprehensible, and clients need sufficient individual abilities. These dimensions are captured by the concept social insurance literacy, which has been operationalized into a measure, the Social Insurance Literacy Questionnaire (SILQ). The aim of this study was to describe the development of the SILQ and evaluate its psychometric properties using Rasch measurement theory.MethodsThe development of the SILQ included a Delphi study and cognitive interviews. A preliminary version, divided on four scales corresponding to the domains of the concept (obtaining information, understanding information, acting on information, and system comprehensibility) was psychometrically evaluated according to Rasch measurement theory, in a survey to a stratified random sample of people on sick leave (n = 1151) sent out in the fall of 2020.ResultsOverall, the items in the final version of the SILQ demonstrated good fit to the Rasch model, and the response scale worked as intended. Unidimensionality was supported for all scales, but minor problems with local dependency was detected for three items. The person separation was 0.80 for the Obtain scale, 0.82 for the Understand scale, 0.68 for the Act scale, and 0.81 for the System scale. Corresponding ordinal alpha values were 0.91, 0.91, 0.86, and 0.91, respectively.ConclusionThis study is a first step toward exploring literacy in the social insurance field. The SILQ covers individual abilities and systems' comprehensibility, and the results show that it has acceptable psychometric properties.
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| 9. |
- Thylén, Ingela, et al.
(author)
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Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator
- 2014
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In: European Journal of Cardiovascular Nursing. - London, United Kingdom : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 13:2, s. 142-151
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Journal article (peer-reviewed)abstract
- Background: Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients' preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients' experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients' perspective concerning end-of-life issues are scarce. Aim: The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the Experiences, Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients' Questionnaire' (EOL-ICDQ). Methods: The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested. Results: The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient. Conclusions: The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.
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| 10. |
- Wenemark, Marika, 1968-
(author)
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Enkätmetodik : att planera och genomföra en undersökning
- 2023. - 1
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Book (other academic/artistic)abstract
- Enkäten är en fantastisk metod för att få ta del av människors erfarenheter, attityder eller idéer. Enkätmetodik – att planera och genomföra en undersökning presenterar alla moment: från idé, planering och konstruktion av frågor till genomförande av datainsamlingen och hantering av datafiler. I boken finns det tydliga exempel och tips på vad ma...[Bokinfo]
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