| 1. |
- Svedbo Engström, Maria, 1980, et al.
(författare)
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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
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Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 101:1, s. 139-146
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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.
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| 2. |
- Israelsson, Johan, et al.
(författare)
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Health status and psychological distress among in-hospital cardiac arrest survivors in relation to gender
- 2017
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Ingår i: Resuscitation. - : Elsevier. - 0300-9572 .- 1873-1570. ; 114, s. 27-33
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To describe health status and psychological distress among in-hospital cardiac arrest (IHCA) survivors in relation to gender.METHODS: This national register study consists of data from follow-up registration of IHCA survivors 3-6 months post cardiac arrest (CA) in Sweden. A questionnaire was sent to the survivors, including measurements of health status (EQ-5D-5L) and psychological distress (HADS).RESULTS: Between 2013 and 2015, 594 IHCA survivors were included in the study. The median values for EQ-5D-5L index and EQ VAS among survivors were 0.78 (q1-q3=0.67-0.86) and 70 (q1-q3=50-80) respectively. The values were significantly lower (p<0.001) in women compared to men. In addition, women reported more problems than men in all dimensions of EQ-5D-5L, except self-care. A majority of the respondents reported no problems with anxiety (85.4%) and/or symptoms of depression (87.0%). Women reported significantly more problems with anxiety (p<0.001) and symptoms of depression (p<0.001) compared to men. Gender was significantly associated with poorer health status and more psychological distress. No interaction effects for gender and age were found.CONCLUSIONS: Although the majority of survivors reported acceptable health status and no psychological distress, a substantial proportion reported severe problems. Women reported worse health status and more psychological distress compared to men. Therefore, a higher proportion of women may be in need of support. Health care professionals should make efforts to identify health problems among survivors and offer individualised support when needed.
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| 3. |
- Lövgren, Malin, et al.
(författare)
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Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
- 2016
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.
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| 4. |
- Gerdle, Björn, et al.
(författare)
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Who benefits from multimodal rehabilitation - an exploration of pain, psychological distress, and life impacts in over 35,000 chronic pain patients identified in the Swedish Quality Registry for Pain Rehabilitation
- 2019
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Ingår i: Journal of Pain Research. - : DOVE Medical Press Ltd.. - 1178-7090. ; 12, s. 891-908
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Tidskriftsartikel (refereegranskat)abstract
- Background: Chronic pain patients frequently suffer from psychological symptoms. There is no consensus concerning the prevalence of severe anxiety and depressive symptoms and the strength of the associations between pain intensity and psychological distress. Although an important aspect of the clinical picture is understanding how the pain condition impacts life, little is known about the relative importance of pain and psychological symptoms for individual's life impact. The aims of this study were to identify subgroups of pain patients; to analyze if pain, psychological distress, and life impact variables influence subgrouping; and to investigate how patients in the subgroups benefit from treatments.Methods: Background variables, pain aspects (intensity/severity and spreading), psychological distress (depressive and anxiety symptoms), and two life impact variables (pain interference and perceived life control) were obtained from the Swedish Quality Registry for Pain Rehabilitation for chronic pain patients and analyzed mainly using advanced multivariate methods.Results: Based on >35,000 patients, 35%-40% had severe anxiety or depressive symptoms. Severe psychological distress was associated with being born outside Europe (21%-24% vs 6%-8% in the category without psychological distress) and low education level (20.7%-20.8% vs 26%-27% in the category without psychological distress). Dose relationships existed between the two psychological distress variables and pain aspects, but the explained variances were generally low. Pain intensity/severity and the two psychological distress variables were significantly associated (R2=0.40-0.48; P>0.001) with the two life impact variables (pain interference and life control). Two subgroups of patients were identified at baseline (subgroup 1: n=15,901-16,119; subgroup 2: n=20,690-20,981) and the subgroup with the worst situation regarding all variables participated less in an MMRP (51% vs 58%, P<0.001) but showed the largest improvements in outcomes.Conclusion: The results emphasize the need to assess both pain and psychological distress and not take for granted that pain involves high psychological stress in the individual case. Not all patients benefit from MMRP. A better matching between common clinical pictures and the content of MMRPs may help improve results. We only partly found support for treatment resistance in patients with psychological distress burden.
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| 5. |
- Hambraeus, Kristina, et al.
(författare)
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SWEDEHEART annual report 2012
- 2014
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Ingår i: Scandinavian Cardiovascular Journal. - : Informa Healthcare. - 1401-7431 .- 1651-2006. ; 48:SUPPL. 63, s. 1-333
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Tidskriftsartikel (refereegranskat)abstract
- The Swedish Web-system for Enhancement and Development of Evidence-based care in Heart disease Evaluated According to Recommended Therapies (SWEDEHEART) supports continuous monitoring and improvement of care for coronary artery disease, catheter-based and surgical coronary interventions, secondary prevention as well as catheter based and surgical valve intervention, by providing extensive data on base-line, diagnostic, procedural and outcome variables. Design. This national quality registry collects information from all Swedish hospitals treating patients with acute coronary artery disease and all patients undergoing coronary angiography, catheter-based interventions or heart surgery. Combination with other national mandatory official registries enables complete follow-up of all individuals regarding myocardial infarction, new interventional procedures, death and all-cause hospitalizations. The registry is governed by an independent steering committee and funded by the Swedish National Health care provider. The software is developed by Uppsala Clinical Research Center. Results. The SWEDEHEART Quality Index reflects overall quality of care for coronary artery disease including secondary prevention. In comparison with 2011, an improvement of the index occurred in 2012 overall. There was however, still a wide range in performance between individual centers, emphasizing the need for continuous monitoring of quality of care at a national as well as on a center level. © 2014 Informa Healthcare.
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| 6. |
- Johansson, Karin, et al.
(författare)
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Patients' experiences of support for learning to live with diabetes to promote health and well-being : A lifeworld phenomenological study
- 2016
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient's perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling support, technology verifying bodily feelings, a permissive climate providing for participation and exchanging experiences with others. The study concludes that the challenge for caregivers is to create interactions in an open learning climate that initiates and supports reflection to promote health and well-being.
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| 7. |
- Thulin, Helena, et al.
(författare)
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Defecation disturbances after cystectomy for urinary bladder cancer
- 2011
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Ingår i: BJU International. - : Blackwell Publishing Ltd. - 1464-4096 .- 1464-410X. ; 108:2, s. 196-203
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Tidskriftsartikel (refereegranskat)abstract
- What’s known on the subject? and What does the study add?Functional gastrointestinal symptoms and problems are common after radical cystectomy with urinary diversion. This study adds new important epidemiological data on this group of symptoms. OBJECTIVE: To describe and compare long-term defecation disturbances in patients who had undergone a cystectomy due to urinary bladder cancer with non-continent urostomies, continent reservoirs and orthotopic neobladder urinary diversions. PATIENTS AND METHODS: During their follow-up we attempted to contact all men and women aged 30–80 years who had undergone cystectomy and urinary diversion at seven Swedish hospitals. During a qualitative phase we identified defecation disturbances as a distressful symptom and included this item in a study-specific questionnaire together with free-hand comments. The patients completed the questionnaire at home. Outcome variables were dichotomized and the results are presented as relative risks with 95% confidence interval. RESULTS: The questionnaire was returned from 452 (92%) of 491 identified patients. Up to 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). A sense of decreased straining capacity was reported by 20% of the men and women with non-continent urostomy and 14% and 8% of those with continent reservoirs and orthotopic neobladders, respectively. CONCLUSIONS: Of the cystectomized individuals 30% reported problems with the physiological emptying process of stool (bowel movement, sensory rectal function, awareness of need for defecation, motoric rectal and anal function, straining ability). Those wanting to improve the situation for bladder cancer survivors may consider communicating before surgery the possibility of stool-emptying problems, and asking about them after surgery.
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| 8. |
- Rexhepi, Hanife, 1984-, et al.
(författare)
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Online electronic healthcare records : Comparing the views of cancer patients and others
- 2020
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Ingår i: Health Informatics Journal. - : Sage Publications. - 1460-4582 .- 1741-2811. ; 26:4, s. 2915-2929
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Tidskriftsartikel (refereegranskat)abstract
- This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare.
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| 9. |
- Heikkilä, Katriina, et al.
(författare)
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Job strain and COPD exacerbations: an individual-participant meta-analysis
- 2014
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Ingår i: European Respiratory Journal. - : European Respiratory Society (ERS). - 0903-1936 .- 1399-3003. ; 44:1, s. 247-251
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Tidskriftsartikel (refereegranskat)abstract
- To the Editor:Chronic obstructive pulmonary disease (COPD) is a major cause of mortality and disability worldwide (1). The clinical course of COPD is characterised by exacerbations, which can be minor and manageable at home or in primary care, or severe, leading to hospitalisation or even death. Known causes of exacerbations include tobacco smoke, air pollution, dusts and fumes, and respiratory infections (1, 2). One less well understood risk factor is stress, which could plausibly lead to COPD exacerbations as it can trigger inflammation (3, 4) and is associated with increased smoking (5), which are both implicated in COPD pathology (2). Work is an important source of stress in the age groups in which COPD is typically diagnosed (1, 6). However, we are not aware of previous investigations of work-related stress and the risk of COPD exacerbations.In this study, we examined the associations between job strain (the most widely studied conceptualisation of work-related stress) and severe COPD exacerbations using individual-level data from 10 prospective cohort studies from the Individual Participant Data Meta-analysis in Working Populations (IPD-Work) Consortium (7). Job strain is defined as a combination of high demands (excessive amounts of work) and low control (having little influence on what tasks to.
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| 10. |
- Pasquini, Mirko, 1991
(författare)
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Like ticking time bombs. Improvising structural competency to ‘Defuse’ the exploding of violence against emergency care workers in Italy
- 2023
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Ingår i: Global Public Health. - : Informa UK Limited. - 1744-1692 .- 1744-1706. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- While violence against health care workers is being progressively recognised as a serious problem in the healthcare industry, it remains an under-studied area of enquiry in global public health. Anthropologists have long observed that violence toward patients is tied to institutional care practises in multiple ways, including repression, misrecognition and silencing. But research on health care staff’s experience of violence is still lacking. This article aims to address this literature gap by providing research on the daily experience of vulnerability to violence that health care providers face during their work. To do so, the paper ethnographically explores the effects and perception of violence against health care workers in an emergency department (ED) in northern Italy, a place with a dramatic escalation of violent incidents. The article illustrates how the ED staff attended to the experience of suffering of potentially violent patients. In so doing, ED professionals shifted the responsibility of violence against them from violent individuals to violent structures shaping health inequities. The paper thus argues that ED professionals display a structural competence perspective when dealing with violence.
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