| 1. |
- Gabrielsson, Hanna, 1977-, et al.
(författare)
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Views on everyday life among adults with spina bifida : an exploration through photovoice
- 2020
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, "an adaptation for us, but it works for no one". Findings are presented as: "Accessibility-a never-ending project," "Tensions of a normative view," and "Power to influence." Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.
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| 2. |
- von Vogelsang, Ann-Christin, et al.
(författare)
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Cognitive, Physical, and Psychological Status After Intracranial Aneurysm Rupture : A Cross-Sectional Study of a Stockholm Case Series 1996 to 1999
- 2013
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Ingår i: World Neurosurgery. - : Elsevier. - 1878-8750 .- 1878-8769. ; 79:1, s. 130-135
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveWe sought to (1) describe psychological, physical, and cognitive functions in patients 10 years after intracranial aneurysm rupture and (2) identify any differences in outcome variables between age groups, gender or aneurysm locations.MethodsA consecutive sample of patients (n = 217) treated for intracranial aneurysm rupture at a neurosurgical clinic in Stockholm, Sweden, were followed-up in a cross-sectional design 10.1 years after the onset with questionnaires and telephone interviews. The outcome measures were psychological functions in terms of symptoms of anxiety or depression and physical and cognitive functions.ResultsCompared with the reference groups, the aneurysm patients scored greater levels of anxiety and depression than normal values. Patients with aneurysm rupture in the posterior circulation scored significantly more problems with anxiety and depression. Only 2.8% of the patients scored for severe physical disability. On a group level, cognition was lower than normal population levels; 21.7% of respondents scored below the cut-off value, indicating cognitive impairments.ConclusionsTen years after aneurysm rupture the majority of patients seem to be well-functioning physically, whereas the psychological and cognitive functions are affected. A screening of the mental health of these patients in connection to radiological follow-up might be helpful to identify which patients need further referral to psychiatric treatment for anxiety and depression disorders.
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| 3. |
- von Vogelsang, Ann-Christin, et al.
(författare)
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Descriptive Epidemiology in Relation to Gender Differences and Treatment Modalities 10 Years After Intracranial Aneurysm Rupture in the Stockholm Cohort 1996–1999
- 2013
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Ingår i: World Neurosurgery. - : Elsevier. - 1878-8750 .- 1878-8769. ; 80:3-4, s. 328-334
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveTo describe epidemiology in relation to gender differences and treatment modalities 10 years after intracranial aneurysm rupture in the Stockholm cohort 1996–1999.MethodsA total of 468 consecutive patients with aneurysmal subarachnoid hemorrhage were followed-up in a retrospective cohort design 10 years after rupture. Information on medical history, clinical variables, and treatments were obtained from patient records. Causes of death were obtained from patient records and The Swedish Cause of Death Register. Incidence of ruptured aneurysms per 100,000 people were calculated from male, female, and overall population data per year from 1996–1999.ResultsTen years after aneurysm rupture 63.9% (n = 296) of patients were still alive. The overall 28-day case fatality was 19.4%; most often deaths were due to the initial hemorrhage. There were no significant differences in survival time between patients treated with clipping (8.4 years, 95% confidence interval 8.1–8.8), compared with endovascularly treated patients (8.2 years, 95% confidence interval 7.4–9.1) (log rank P = 0.550). The female incidence was higher than that of men, and women were significantly older at the onset of aneurysm rupture (55.7 vs. 52.8 years, P = 0.027).ConclusionsTen years after rupture, most treated patients were still alive. The mortality was highest in the first month after rupture, due to the initial hemorrhage. Gender differences were apparent in incidence, but 10 years after the rupture mortality rates and survival times were equal between men and women. Survival time was equal between patients within active treatment modalities.
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| 4. |
- Gyllensten, Hanna, 1979, et al.
(författare)
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Costs and quality of life by disability among people with multiple sclerosis : a register-based study in Sweden
- 2018
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Ingår i: Multiple Sclerosis Journal, Experimental, Translational and Clinical. - : Sage Publications. - 2055-2173. ; 4:3
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Tidskriftsartikel (refereegranskat)abstract
- Background: Population-based estimates of costs of illness and health-related quality of life, by disability levels among people with multiple sclerosis, are lacking.Objectives: To estimate the annual costs of illness and health-related quality of life, by disability levels, among multiple sclerosis patients, 21-64 years of age.Methods: Microdata from Swedish nationwide registers were linked to estimate the prevalence-based costs of illness in 2013, including direct costs (prescription drug use and specialised healthcare) and indirect costs (calculated using sick leave and disability pension), and health-related quality of life (estimated from the EQ-5D). Disability level was measured by the Expanded Disability Status Scale (EDSS).Results: Among 8906 multiple sclerosis patients, EDSS 0.0-3.5 and 7.0-9.5 were associated with mean indirect costs of SEK 117,609 and 461,357, respectively, whereas direct costs were similar between the categories (SEK 117,423 and 102,714, respectively). Prescription drug costs represented 40% of the costs of illness among multiple sclerosis patients with low EDSS, while among patients with high EDSS more than 80% were indirect costs. Among the 1684 individuals who had reported both EQ-5D and EDSS, the lowest health-related quality of life scores were found among those with a high EDSS.Conclusion: Among people with multiple sclerosis, we confirmed higher costs and lower health-related quality of life in higher disability levels, in particular high indirect costs.
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| 5. |
- Wimo, Anders, et al.
(författare)
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Cohort Effects in the Prevalence and Survival of People with Dementia in a Rural Area in Northern Sweden
- 2016
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Ingår i: Journal of Alzheimer's Disease. - 1387-2877 .- 1875-8908. ; 50:2, s. 387-396
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Tidskriftsartikel (refereegranskat)abstract
- Background: Recent studies suggest that trends in cardiovascular risk may result in a decrease in age-specific prevalence of dementia. Studies in rural areas are rare.Objectives: To study cohort effects in dementia prevalence and survival of people with dementia in a Swedish rural area.Methods: Participants were from the 1995-1998 Nordanstig Project (NP) (n = 303) and the 2001-2003 Swedish National study on Aging and Care in Nordanstig (SNAC-N) (n = 384). Overall 6-year dementia prevalence and mortality in NP and SNAC-N were compared for people 78 years and older. Logistic regression analyses were used to calculate odds ratios (ORs) and 95% confidence intervals (CIs) for dementia occurrence using the NP study population as the reference group. Cox regression models were used to analyze time to death.Results: The crude prevalence of dementia was 21.8% in NP and 17.4% in SNAC-N. When the NP cohort was used as the reference group, the age- and gender-adjusted OR of dementia was 0.71 (95% CI 0.48-1.04) in SNAC-N; the OR was 0.47 (0.24-0.90) for men and 0.88 (0.54-1.44) for women. In the extended model, the OR of dementia was significantly lower in SNAC-N than in the NP cohort as a whole (0.63; 0.39-0.99) and in men (0.34; 0.15-0.79), but not in women (0.81; 0.46-1.44). The Cox regression models indicated that the hazard ratio of dying was lower in the SNAC-N than NP population.Conclusions: Trends toward a lower prevalence of dementia in high-income countries seem to be evident in this Swedish rural area, at least in men.
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| 6. |
- Ehrén, Ingrid, et al.
(författare)
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Voiding conditions, renal and bowel function in a cohort of adults with spina bifida
- 2020
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Ingår i: Neurourology and Urodynamics. - : Wiley. - 0733-2467 .- 1520-6777. ; 39:6, s. 1796-1802
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To map voiding patterns, degree of continence, use of drugs for voiding disorders, kidney function and surgical interventions but also the bowel function in a near-total regional cohort of adults with spina bifida aged more than or equal to 18 years.METHODS: All individuals more than or equal to 18 years of age with spina bifida registered at a regional outpatient clinic (n = 219) were invited to participate, of which 196 persons were included. Bladder and bowel function were assessed according to questions used by the Nordic Spinal Cord Injury Registry by structured interviews and questionnaires in combination with review of patient charts including kidney function.RESULTS: Twenty percent of the patients voided spontaneously. Fifty-four percent used clean intermittent catherization (CIC) and of these, 14% had also undergone augmentation of the bladder and/or implantation of an artificial sphincter or sling, 23% had undergone major urological surgery, and 3% had an indwelling catheter. Seventeen percent of patients voiding spontaneously or using CIC reported total continence but as many as 36% reported daily leakage. Anticholinergics was the most common drug, used by 21% in the total cohort. About 13% of the patients had a reduced kidney function but only 1.5% had end stage renal failure. Seventy-three percent had problems emptying the bowel and 18% experienced fecal leakage weekly or even daily.CONCLUSION: We found a large variation in problems with bladder and bowel function in this adult group of persons with spina bifida. A structured customized program for follow-up seems necessary to optimize their health status in these areas.
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| 7. |
- Qiu, Chengxuan, et al.
(författare)
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Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden
- 2013
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Ingår i: Neurology. - 0028-3878 .- 1526-632X. ; 80:20, s. 1888-1894
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To explore whether prevalence, survival, and incidence of dementia have changed from 1987–1994 to 2001–2008 in Stockholm, Sweden.Methods: This study is based on 2 cross-sectional surveys of people aged 75 years or over conducted in central Stockholm: the Kungsholmen Project (KP) (1987–1989, n = 1,700) and the Swedish National study on Aging and Care in Kungsholmen (SNAC-K) (2001–2004, n = 1,575). In both surveys we diagnosed dementia according to DSM-III-R criteria, following the identical diagnostic procedure. Death certificates were used to determine survival status of KP participants as of December 1994 and SNAC-K participants as of June 2008. We used logistic and Cox models to compare prevalence and survival, controlling for major confounders. We inferred incidence of dementia according to its relationship with prevalence and survival.Results: At baseline, 225 subjects in KP and 298 in SNAC-K were diagnosed with dementia. The age- and sex-standardized prevalence of dementia was 17.5% (12.8% in men; 19.2% in women) in KP and 17.9% (10.8% in men; 20.5% in women) in SNAC-K. The adjusted odds ratio of dementia in SNAC-K vs KP was 1.17 (95% confidence interval 0.95–1.46). The multiadjusted hazard ratio of death in SNAC-K vs KP was 0.71 (0.57–0.88) in subjects with dementia, 0.68 (0.59–0.79) in those without dementia, and 0.66 (0.59–0.74) in all participants.Conclusions: Prevalence of dementia was stable from the late 1980s to the early 2000s in central Stockholm, Sweden, whereas survival of patients with dementia increased. These results suggest that incidence of dementia may have decreased during this period.
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| 8. |
- Zander, Viktoria, et al.
(författare)
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Struggling for sense of control : Everyday life with chronic pain for women of the Iraqi diaspora in Sweden
- 2013
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 41:8, s. 799-807
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Tidskriftsartikel (refereegranskat)abstract
- Background: As dispersed ethnic populations in Swedish society expand, the healthcare system need to adapt rehabilitation services according to their needs. The experiences of trauma and forced resettlement have a continuing impact on health and musculoskeletal pain, as well as the intersecting structures that prerequisite the possibilities in the new country. To understand the specific needs of women from the Iraqi diaspora in Sweden, there is a need to elucidate the effects of pain on their everyday life. Aims: To elucidate everyday life with chronic pain from the perspective of women from the Iraqi diaspora in Sweden. Methods: Qualitative interview study according to Glaser's grounded theory. Results: The results from 11 interviews suggest that pain was associated with dependency on society as well as on family. It resulted in a struggle for sense of control, framed by faith in God, influenced by the healthcare system, and with support from family. The women's testimony of lack of continuity of care, resulting in recollection of lived traumas in every visit, is a vital sign of the unconscious power relations within health care and how representatives from health care, instead of being the ones who help the women forward, become the ones who hold them back. Conclusions: The results show the importance of challenging the normative assumptions embedded in health care and treatment for patients with chronic pain and of including the voice of "others". © 2013 the Nordic Societies of Public Health.
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| 9. |
- von Vogelsang, Ann-Christin, et al.
(författare)
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Health-Related Quality of Life 10 Years After Intracranial Aneurysm Rupture : A Retrospective Cohort Study Using EQ-5D
- 2013
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Ingår i: Neurosurgery. - : Lippincott Williams & Wilkins. - 0148-396X .- 1524-4040. ; 72:3, s. 397-405
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Experiencing an aneurysmal subarachnoid hemorrhage (SAH) could affect health-related quality of life (HRQoL) several years after the onset. Long-term studies are scarce, and there is a lack of knowledge of whether HRQoL is affected > 5 years after the onset and, if so, in what dimensions. In the general population, HRQoL decreases with age and with the occurrence of a disease and differs between sexes. Factors that may influence HRQoL after aneurysmal SAH include neurological outcome, perceived recovery, aneurysm treatment, and family support.OBJECTIVE: To measure HRQoL and to explore factors affecting HRQoL 10 years after aneurysmal SAH.METHODS: A consecutive sample of all patients admitted for intracranial aneurysm rupture at a neurosurgical clinic in Stockholm (n = 217, 79.5% of eligible) were followed up from 2007 to 2008, approximately 10 years after aneurysm rupture. HRQoL was measured with EQ-5D, and the results were compared with a general population sample from the Stockholm Public Health Survey 2006 matched by age and sex.RESULTS: Compared with the general population, the aneurysm sample reported significantly more problems in 4 of 5 EQ-5D dimensions—mobility, self-care, usual activities, and anxiety/depression—and had significantly lower EQ-5Dindex and EQ visual analog scale values. Within the aneurysm sample, HRQoL was most affected in respondents with worse Glasgow Outcome Scale values at hospital discharge, respondents with comorbidities, and respondents with low perceived recovery.CONCLUSION: Aneurysmal SAH affects HRQoL to a large extent, even 10 years after the onset, indicating a need for long-term follow-up and support after the onset
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| 10. |
- Ehrén, Ingrid, et al.
(författare)
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Cognitive challenges in persons with spina bifida : Bearing on urological dysfunctions?
- 2020
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Ingår i: Neurourology and Urodynamics. - : John Wiley & Sons. - 0733-2467 .- 1520-6777. ; 39:8, s. 2139-2145
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To evaluate if adult persons with spina bifida (SB) who have urinary tract complications have cognitive difficulties that can be identified by neuropsychological tests.METHODS: All individuals with SB ≥ 18 years of age registered at a regional outpatient clinic (n = 219) were invited, of which, 154 persons were included. Neuropsychological assessment of their cognitive status was performed with Wechsler Adult Intelligence Scale®-Fourth Edition: Coding, Block design, Arithmetic's, FAS (word generation), Rey Auditory Verbal Test for learning, and delayed recall 30 min. Bladder and bowel function were assessed with questions used by the Nordic Spinal Cord Injury Registry (NSCIR) in structured interviews, by questionnaires, and by chart reviews.RESULTS: Average neuropsychological test results for this SB population was shown to be approximately 1 SD under the median for the general population. The Coding test showed significantly lower test results as compared with the whole SB group in persons with urinary tract complications, especially urinary tract infections, reduced kidney function, dependent emptying of the bladder, and the bowel and accidental bowel leakage. The Arithmetic's test showed a significant difference between subgroups in all parameters except reduced kidney function whereas the other neuropsychological tests were significantly correlated with some but not all urological parameters.CONCLUSION: We propose neuropsychological testing with primarily two tests to find those persons with SB who, due to cognitive challenges, might need extra support to minimize urological complications.
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