| 1. |
- Moll, Jonas, 1982-, et al.
(författare)
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Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records : National Patient Survey
- 2024
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Ingår i: JMIR Mental Health. - : JMIR Publications. - 2368-7959. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health issues (mean_mental health 3.38, SD_mental health 1.21; mean_others 3.52, SD_others 1.18; P=.02) believe that PAEHRs help them in shared decision-making compared to other patient groups. Conclusions: Patients with mental health issues who took part in the survey, as a group, express some minor differences in both the use of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly higher interest in 2 types of use: checking for accuracy of care in the record and blocking access to mental health notes for professionals from other parts of the health care system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision-making. The study indicates that the benefits of PAEHR on a general level are the same for this patient group as for other patients. The study does not support clinicians’ worry about possible harm to this patient group. Further research is however needed.
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| 2. |
- Bergqvist, Erik, et al.
(författare)
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Health care utilisation two years prior to suicide in Sweden: a retrospective explorative study based on medical records
- 2022
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective Previous literature has suggested that identifying putative differences in health care seeking patterns before death by suicide depending on age and gender may facilitate more targeted suicide preventive approaches. The aim of this study is to map health care utilisation among individuals in the two years prior to suicide in Sweden in 2015 and to examine possible age and gender differences. Methods Design: A retrospective explorative study with a medical record review covering the two years preceding suicide. Setting: All health care units located in 20 of Sweden's 21 regions. Participants: All individuals residing in participating regions who died by suicide during 2015 (n = 949). Results Almost 74% were in contact with a health care provider during the 3 months prior to suicide, and 60% within 4 weeks. Overall health care utilisation during the last month of life did not differ between age groups. However, a higher proportion of younger individuals (< 65 years) were in contact with psychiatric services, and a higher proportion of older individuals (>= 65 years) were in contact with primary and specialised somatic health care. The proportion of women with any type of health care contact during the observation period was larger than the corresponding proportion of men, although no gender difference was found among primary and specialised somatic health care users within four weeks and three months respectively prior to suicide. Conclusion Care utilisation before suicide varied by gender and age. Female suicide decedents seem to utilise health care to a larger extent than male decedents in the two years preceding death, except for the non-psychiatric services in closer proximity to death. Older adults seem to predominantly use non-psychiatric services, while younger individuals seek psychiatric services to a larger extent.
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| 3. |
- 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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| 4. |
- Westius, Anders, et al.
(författare)
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View of life in persons with dementia
- 2009
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Ingår i: Dementia. - London : Sage. - 1471-3012 .- 1741-2684. ; 8:4, s. 481-499
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To study the view of life in dementia. The view of life of an individual is defined as a conception of reality, a central system of values and a basic emotional attitude.Method: Interviews with persons (N = 21) with mild to moderate dementia of the Alzheimer’s type. The interview data were interpreted with a phenomenological hermeneutical method.Results: Despite their cognitive deterioration it was possible to understand the view of life of the participants in the frame of their life story. Their view of life seemed to guide them towards selecting mainly emotionally powerful and value-oriented memories. No exceptional characteristics that could be traced to their dementia disease were found in the participants’ views of life. Conclusions: The view of life of the participants with mild to moderate dementia was vital for their life story and was not erased by dementia.Implications: In order to respect people with dementia as persons, caregivers should strive for gaining some knowledge of their view of life.
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| 5. |
- Westius, Anders, et al.
(författare)
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Views of life and sense of identity in people with Alzheimer's disease
- 2010
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Ingår i: Ageing & Society. - Cambridge, United Kingdom : Cambridge university press. - 0144-686X .- 1469-1779. ; 30:7, s. 1257-1278
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Tidskriftsartikel (refereegranskat)abstract
- Making it possible for people with Alzheimer's disease to retain a sense of identity during the process of the disease poses a great challenge to care-givers, professionals and family carers. The aim of this study is to elucidate the role of the view of life of people with Alzheimer's in framing their sense of identity. Is their view of life a vital aspect of their sense of identity? ‘View of life’ was interpreted as a vital aspect of sense of identity, understood as the individual's beliefs about their life history and about the attributes that characterised them. Twenty-one people with mild to moderate stages of Alzheimer's disease were interviewed about their life story. The narratives were interpreted using a phenomenological hermeneutic method. By telling their life story, the participants also narrated their view of life, i.e. their conception of reality, their central system of values and their basic emotional attitudes. By their own accounts, the origins of the narrators' central values and basic emotional attitudes were established in early life. They also expressed a sense of meaningfulness and continuity when looking back on their lives. The findings suggest that for a care-giver or confidant, having knowledge of a person with dementia's view of life is valuable when seeking to confirm that person's sense of identity.
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| 6. |
- Bornehag, Carl-Gustaf, 1957-, et al.
(författare)
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The SELMA study : a birth cohort study in Sweden following more than 2000 mother-child pairs
- 2012
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Ingår i: Paediatric and Perinatal Epidemiology. - Hoboken, USA : Wiley-Blackwell. - 0269-5022 .- 1365-3016. ; 26:5, s. 456-467
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Tidskriftsartikel (refereegranskat)abstract
- Background: This paper describes the background, aim and study design for the Swedish SELMA study that aimed to investigate the importance of early life exposure during pregnancy and infancy to environmental factors with a major focus on endocrine disrupting chemicals for multiple chronic diseases/disorders in offspring.Methods: The cohort was established by recruiting women in the 10th week of pregnancy. Blood and urine from the pregnant women and the child and air and dust from home environment from pregnancy and infancy period have been collected. Questionnaires were used to collect information on life styles, socio-economic status, living conditions, diet and medical history.Results: Of the 8394 reported pregnant women, 6658 were invited to participate in the study. Among the invited women, 2582 (39%) agreed to participate. Of the 4076 (61%) non-participants, 2091 women were invited to a non-respondent questionnaire in order to examine possible selection bias. We found a self-selection bias in the established cohort when compared with the non-participant group, e.g. participating families did smoke less (14% vs. 19%), had more frequent asthma and allergy symptoms in the family (58% vs. 38%), as well as higher education among the mothers (51% vs. 36%) and more often lived in single-family houses (67% vs. 60%).Conclusions: These findings indicate that the participating families do not fully represent the study population and thus, the exposure in this population. However, there is no obvious reason that this selection bias will have an impact on identification of environmental risk factors.
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| 7. |
- 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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| 8. |
- Silén, Marit, et al.
(författare)
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Nurses' conceptions of decision making concerning life-sustaining treatment
- 2008
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Ingår i: Nursing Ethics. - London : Edward Arnold. - 0969-7330 .- 1477-0989. ; 15:2, s. 160-173
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician-nurse collaboration, lack of confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed.
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| 9. |
- Gustavsson, Anders, et al.
(författare)
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Cost of disorders of the brain in Europe 2010.
- 2011
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Ingår i: European Neuropsychopharmacology. - Amsterdam : Elsevier BV. - 0924-977X .- 1873-7862. ; 21:10, s. 718-79
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The spectrum of disorders of the brain is large, covering hundreds of disorders that are listed in either the mental or neurological disorder chapters of the established international diagnostic classification systems. These disorders have a high prevalence as well as short- and long-term impairments and disabilities. Therefore they are an emotional, financial and social burden to the patients, their families and their social network. In a 2005 landmark study, we estimated for the first time the annual cost of 12 major groups of disorders of the brain in Europe and gave a conservative estimate of €386 billion for the year 2004. This estimate was limited in scope and conservative due to the lack of sufficiently comprehensive epidemiological and/or economic data on several important diagnostic groups. We are now in a position to substantially improve and revise the 2004 estimates. In the present report we cover 19 major groups of disorders, 7 more than previously, of an increased range of age groups and more cost items. We therefore present much improved cost estimates. Our revised estimates also now include the new EU member states, and hence a population of 514 million people.AIMS: To estimate the number of persons with defined disorders of the brain in Europe in 2010, the total cost per person related to each disease in terms of direct and indirect costs, and an estimate of the total cost per disorder and country.METHODS: The best available estimates of the prevalence and cost per person for 19 groups of disorders of the brain (covering well over 100 specific disorders) were identified via a systematic review of the published literature. Together with the twelve disorders included in 2004, the following range of mental and neurologic groups of disorders is covered: addictive disorders, affective disorders, anxiety disorders, brain tumor, childhood and adolescent disorders (developmental disorders), dementia, eating disorders, epilepsy, mental retardation, migraine, multiple sclerosis, neuromuscular disorders, Parkinson's disease, personality disorders, psychotic disorders, sleep disorders, somatoform disorders, stroke, and traumatic brain injury. Epidemiologic panels were charged to complete the literature review for each disorder in order to estimate the 12-month prevalence, and health economic panels were charged to estimate best cost-estimates. A cost model was developed to combine the epidemiologic and economic data and estimate the total cost of each disorder in each of 30 European countries (EU27+Iceland, Norway and Switzerland). The cost model was populated with national statistics from Eurostat to adjust all costs to 2010 values, converting all local currencies to Euro, imputing costs for countries where no data were available, and aggregating country estimates to purchasing power parity adjusted estimates for the total cost of disorders of the brain in Europe 2010.RESULTS: The total cost of disorders of the brain was estimated at €798 billion in 2010. Direct costs constitute the majority of costs (37% direct healthcare costs and 23% direct non-medical costs) whereas the remaining 40% were indirect costs associated with patients' production losses. On average, the estimated cost per person with a disorder of the brain in Europe ranged between €285 for headache and €30,000 for neuromuscular disorders. The European per capita cost of disorders of the brain was €1550 on average but varied by country. The cost (in billion €PPP 2010) of the disorders of the brain included in this study was as follows: addiction: €65.7; anxiety disorders: €74.4; brain tumor: €5.2; child/adolescent disorders: €21.3; dementia: €105.2; eating disorders: €0.8; epilepsy: €13.8; headache: €43.5; mental retardation: €43.3; mood disorders: €113.4; multiple sclerosis: €14.6; neuromuscular disorders: €7.7; Parkinson's disease: €13.9; personality disorders: €27.3; psychotic disorders: €93.9; sleep disorders: €35.4; somatoform disorder: €21.2; stroke: €64.1; traumatic brain injury: €33.0. It should be noted that the revised estimate of those disorders included in the previous 2004 report constituted €477 billion, by and large confirming our previous study results after considering the inflation and population increase since 2004. Further, our results were consistent with administrative data on the health care expenditure in Europe, and comparable to previous studies on the cost of specific disorders in Europe. Our estimates were lower than comparable estimates from the US.DISCUSSION: This study was based on the best currently available data in Europe and our model enabled extrapolation to countries where no data could be found. Still, the scarcity of data is an important source of uncertainty in our estimates and may imply over- or underestimations in some disorders and countries. Even though this review included many disorders, diagnoses, age groups and cost items that were omitted in 2004, there are still remaining disorders that could not be included due to limitations in the available data. We therefore consider our estimate of the total cost of the disorders of the brain in Europe to be conservative. In terms of the health economic burden outlined in this report, disorders of the brain likely constitute the number one economic challenge for European health care, now and in the future. Data presented in this report should be considered by all stakeholder groups, including policy makers, industry and patient advocacy groups, to reconsider the current science, research and public health agenda and define a coordinated plan of action of various levels to address the associated challenges.RECOMMENDATIONS: Political action is required in light of the present high cost of disorders of the brain. Funding of brain research must be increased; care for patients with brain disorders as well as teaching at medical schools and other health related educations must be quantitatively and qualitatively improved, including psychological treatments. The current move of the pharmaceutical industry away from brain related indications must be halted and reversed. Continued research into the cost of the many disorders not included in the present study is warranted. It is essential that not only the EU but also the national governments forcefully support these initiatives.
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| 10. |
- Nilsagård, Ylva, et al.
(författare)
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Evaluation of a single session with cooling garment for persons with multiple sclerosis-a randomized trial
- 2006
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 1748-3107 .- 1748-3115. ; 1:4, s. 225-233
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Tidskriftsartikel (refereegranskat)abstract
- Purpose. This research investigates the objective and subjective effects of wearing the Rehband® cooling garment. Method. A multi-centre, randomized crossover study was conducted regarding 43 heat-sensitive persons with multiple sclerosis (MS), comparing active treatment with placebo. Subjects were tested immediately before and after intervention. Ten- (10TW) and 30-metre timed walk (30TW), oral temperature, spasticity, standing balance and timed up and go (TUG) and nine-hole peg test (NHPT) performance were measured. A study-specific questionnaire was used to evaluate subjective experiences. Results. Active treatment produced statistically significant objective improvement in 10TW, 30TW, one-legged stance, tandem stance (right) and TUG; statistically significant subjective improvement was also found in fatigue, spasticity, weakness, balance, gait, transfers, ability to think clearly and time to recover. The coherence between the objective and subjective results indicates clinical relevance from the subjects' perspective. There were no statistically significant differences between treatments in terms of oral temperature, spasticity (measured by the modified Ashworth scale), tandem stance (left), step test or NHPT, or subjective signs such as difficulty in dressing, dysarthria or pain. Conclusions. Active cooling with a Rehband® vest is likely to have a positive effect on everyday life in heat-sensitive persons with MS.
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