| 1. |
- 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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| 2. |
- 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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| 3. |
- Landfeldt, Erik, et al.
(författare)
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Health-related quality of life of children with spinal muscular atrophy in Sweden : A prospective cohort study in the era of disease-modifying therapy
- 2023
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Ingår i: European journal of paediatric neurology. - : Elsevier. - 1090-3798 .- 1532-2130. ; 46, s. 67-73
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Tidskriftsartikel (refereegranskat)abstract
- The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.
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| 4. |
- Ozanne, Anneli, 1978, et al.
(författare)
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Symptom relief during last week of life in neurological diseases
- 2019
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Ingår i: Brain and Behavior. - : Wiley. - 2162-3279. ; 9:8
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Tidskriftsartikel (refereegranskat)abstract
- Objectives The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND). Material & Methods Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death. Results The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions. Conclusions The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.
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| 5. |
- Björkdahl, Ann, 1959-, et al.
(författare)
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Decline in cognitive function due to diffuse axonal injury does not necessarily imply a corresponding decline in ability to perform activities
- 2016
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 38:10, s. 1006-1015
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The study explored the direction of change (decline vs. improvement) after diffuse axonal injury (DAI) in the domains of the ICF: body structure, body function, and activity.Methods: Thirteen patients with DAI were assessed by using diffusion tensor imaging (DTI) to measure body structure, the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS) to measure body function, and the Assessment of Motor and Process Skills (AMPS) to measure activity. The DTI, BNIS, and AMPS were applied at the acute phase (A1), and at 6 and 12 months post-injury (A2 and A3). Visual and statistical analyses were conducted to explore time-dependent changes in the ICF domains.Results: Improvements were observed for most patients in all ICF domains from injury until six months. Thereafter, the results diverged, with half of the subjects showing a decline in DTI and BNIS scores between A2–A3, and all but one of the patients exhibiting identical or better A2–A3 AMPS process skill scores.Conclusions: From 6 to 12 months post-injury, some patients underwent an ongoing degenerative process, causing a decline in cognitive function. The same decline was not observed in the activity measure, which might be explained by the use of compensatory strategies.Implications for rehabilitationIn rehabilitation it is essential to be aware that in some cases with TBI, an ongoing degenerative process in the white matter can be expected, causing an adverse late effect on cognitive function.The cognitive decline, caused by DAI, does not necessarily mean a concurrent decrease in activity performance, possibly explained by the use of compensatory strategies. This suggests that, after the post-acute phase, rehabilitation offering strategy training may be beneficial to enhance every-day functioning.Strategy use requires awareness, which imply the need to assess level of awareness in order to guide rehabilitation.
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| 6. |
- Stibrant Sunnerhagen, Katharina, 1957, et al.
(författare)
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Gothenburg very early supported discharge study (GOTVED) NCT01622205: a block randomized trial with superiority design of very early supported discharge for patients with stroke
- 2013
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Ingår i: Bmc Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 13:66
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Tidskriftsartikel (refereegranskat)abstract
- Background: Stroke is the disease with the highest costs for hospital care and also after discharge. The aim is to investigate if very early supported discharge (VESD) for stroke patients in need for on- Methods/design: A randomized controlled trial comparing VESD with ordinary discharge. Inclusion Primary outcome: levels of anxiety and depression. Secondary outcomes: independence, security, level Power calculation is based on the level of anxiety and with a power of 80%, p-value 0.05 (2 sided test) Discussion: The ESD studies in the Cochrane review present hospital stays of a length that no longer
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| 7. |
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| 8. |
- Hjorth, Elin, et al.
(författare)
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"Suddenly we have hope that there is a future" : Two families’ narratives when a child with spinal muscular atrophy receives a new effective drug
- 2021
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This study aims to explore negotiations of hope in everyday life for families where a child with spinal muscular atrophy (SMA) has received a new drug treatment.Methods: A narrative design was used, drawing on interviews and participant observations in two families with children with SMA, types 1–2, to situate family experiences of hope in everyday life. Narrative analysis was used on the data.Results: Results are presented as stories, with details about situations and contexts, to illustrate how hope was used by families to reconstruct their own family narratives.Conclusions: Hope was negotiated and struggled with in different ways by different family members, but contributed to each person’s own way of dealing with the disease and outlook for the future.
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| 9. |
- Rafsten, Lena, et al.
(författare)
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Gothenburg Very Early Supported Discharge study (GOTVED) : a randomised controlled trial investigating anxiety and overall disability in the first year after stroke
- 2019
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Ingår i: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 19, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND PURPOSE: Early supported discharge (ESD) has been shown to be efficient and safe as part of the stroke care pathway. The best results have been seen with a multidisciplinary team and after mild to moderate stroke. However, how very early supported discharge (VESD) works has not been studied. The aim of this study was to investigate whether VESD for stroke patients in need of ongoing individualized rehabilitation affects the level of anxiety and overall disability for the patient compared with ordinary discharge routine.METHODS: A randomized controlled trial was performed with intention to treat analyses comparing VESD and ordinary discharge from hospital. All patients admitted at the stroke care unit at Sahlgrenska University Hospital of Gothenburg between August 2011 and April 2016 were screened. Inclusion occurred on day 4 using a block randomization of 20 and with a blinded assessor. Assessments were made 5 days post-stroke and 3 and 12 months post-stroke. Patients in the VESD group underwent continued rehabilitation in their homes with a multidisciplinary team from the stroke care unit for a maximum of 1 month. The patients in the control group had support as usual after discharge when needed such as home care service and outpatient rehabilitation. The primary outcome was anxiety as assessed by the Hospital Anxiety and Depression Scale-Anxiety subscale (HADS-A). The secondary outcome was the patients' degree of overall disability, measured by the modified Rankin Scale (mRS).RESULTS: No significant differences were found between the groups regarding anxiety at three or 12 months post-stroke (p = 0.811). The overall disability was significantly lower in the VESD group 3 months post-stroke (p = 0.004), compared to the control group. However, there was no significant difference between the groups 1 year post-stroke.CONCLUSIONS: The VESD does not affects the level of anxiety compared to ordinary rehabilitation. The VESD leads to a faster improvement of overall disability compared to ordinary rehabilitation. We suggest considering coordinated VESD for patients with mild to moderate stroke in addition to ordinary rehabilitation as part of the service from a stroke unit.TRIAL REGISTRATION: Clinical Trials.gov: NCT01622205. Registered 19 June 2012 (retrospectively registered).
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| 10. |
- Werhagen, Lars, et al.
(författare)
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Medical complication in adults with spina bifida
- 2013
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Ingår i: Clinical neurology and neurosurgery. - : Elsevier. - 0303-8467 .- 1872-6968. ; 115:8, s. 1226-1229
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Tidskriftsartikel (refereegranskat)abstract
- SETTING: Cohort study.INTRODUCTION: Spina bifida (SB) is a congenital malformation affecting the central nervous system (CNS) and is one of the most prevalent CNS disorders in children. Hydrocephalus (HC) is present in 80% of newborns with SB. The aim of the present study was to analyze the medical complications and to relate the complications to age at examination, the level of injury, AIS grade and presence of HC in adults with SB.MATERIALS AND METHODS: SB patients were recruited from the Spinalis out-patient clinic at the Karolinska University Hospital at their annual follow-up. The patients underwent a thorough general and neurological examination and background data including medical complications were retrieved from the medical files.RESULTS: 127 of 157 (82%) SB patients (114 with MMC and 13 SB occulta) with a mean age of 34 years were included. Half of the patients had a complete SCI and a lumbar level was most common. Nearly 60% of the patients had HC. 88 patients (69%) suffered from at least one medical complication. Urinary tract infection (UTI), scoliosis and pain were the most common complications found in 46%, 30% and 28% of the patients, respectively. Less common complications were epilepsy, pressure ulcers (PU) and spasticity.DISCUSSION: SB gives a disability including motor, sensory dysfunctions and the patients suffer from a high frequency of medical complications like UTI, scoliosis, pain, and epilepsy. Data gives basis for adequate routines for medical examination at the follow-up.
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