| 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. |
- 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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| 3. |
- 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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| 4. |
- 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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| 5. |
- Olsson, Malin, et al.
(författare)
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The meaning of women's experiences of living with multiple sclerosis
- 2008
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Ingår i: Health Care for Women International. - : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 29:4, s. 416-430
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Tidskriftsartikel (refereegranskat)abstract
- We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated
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| 6. |
- 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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| 7. |
- 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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| 8. |
- Augutis, Marika, et al.
(författare)
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Psychosocial aspects of traumatic spinal cord injury with onset during adolescence : A qualitative study
- 2007
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Ingår i: Journal of Spinal Cord Medicine (JSCM). - : Informa UK Limited. - 1079-0268 .- 2045-7723. ; 30:Suppl1, s. 55-64
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND/OBJECTIVE: Spinal cord injury (SCI) occurring during adolescence poses additional challenges because of the concurrent age-specific bio-psychosocial development. Full understanding of the psychosocial dimensions of rehabilitation requires exploration of the patient perspective. The objective of this study was to focus on psychosocial factors from the patient perspective in persons who had previously sustained a SCI during early and mid-adolescence (11-15 years of age).METHODS: Twenty-four of the 28 persons who had sustained a SCI in Sweden from 1985 to 1996 participated in the study. Semistructured interviews were made an average of 10 years after injury. Narratives were analyzed qualitatively according to content analysis.RESULTS: Parents and peers were found to have formed a crucial network. Parents frequently acted as advocates in interactions with health care providers, as supporters, and as containers of sorrow, frustration, and anger. Peers acted as promoters of activity and identity development. However, health care providers were perceived as not making sufficient use of this network.CONCLUSIONS: Rehabilitation professionals might be encouraged to increase their knowledge of adolescence medicine to better meet the specific needs and demands of persons in this age group. It is further suggested that parents and peers be considered important partners in the joint rehabilitation effort.
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| 9. |
- Björkdahl, Ann, 1959, et al.
(författare)
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A randomized study of computerized working memory training and effects on functioning in everyday life for patients with brain injury
- 2013
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Ingår i: Brain Injury. - : Informa UK Limited. - 0269-9052 .- 1362-301X. ; 27:13-14, s. 1658-65
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Tidskriftsartikel (refereegranskat)abstract
- Background: Working memory (WM) problems influence most activities of daily living. The aim was to evaluate if computerized working memory training after brain injury has a significant effect on functioning in daily life. Method: Outpatients with WM deficits, aged 22-63 years, were randomized to either intervention group (IG, n = 20) or control group (CG, n = 18) and received 5 weeks standard rehabilitation. The IG also received WM training with the Cogmed QM training program. Assessments were made before (A1), immediately (A2) and 3 months (A3) after intervention. After follow-up, the CG was offered the computerized training and assessed after this (A4; n = 8). Assessments included the WAIS-III Digit span reversed, Fatigue Impact Scale (FIS), Assessment of Motor and Process Skills (AMPS), Rivermead Behavioural Memory Test-II (RBMT-II) and a WM questionnaire. Results: The IG improved on digit span and FIS, A1-A2, and significantly more than the CG on the WM questionnaire, A1-A3. Both groups improved in AMPS motor skill and the AMPS process skill score tended towards significant improvement in the IG, from A1-A3. After training (A3-A4), the CG improved in digit span and RBMT-II. Conclusion: The WM training seems to have a generalized effect on functional activity and lessens fatigue.
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| 10. |
- Björkdahl, Ann, 1959, et al.
(författare)
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Can rehabilitation in the home setting reduce the burden of care for the next-of-kin of stroke victims?
- 2007
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Ingår i: J Rehabil Med. - : Medical Journals Sweden AB. ; 39:1, s. 27-32
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: More evidence of the efficacy of caregiver interventions is needed. The aim of this study was to evaluate whether counselling in the home setting reduces the caregiver burden. METHODS: Thirty-six patients after stroke, median age 53 years, with a close family member, were selected for an evaluation of the burden of care and 35 participated. They were part of a randomized controlled trial, comparing rehabilitation in the home setting with outpatient rehabilitation. In the home setting, counselling about the stroke and its consequences was included. Assessments with the Caregiver Burden scale were made at 3 weeks, 3 months and one year after discharge. RESULTS: The burden of the 2 groups did not differ. After the intervention, there was a tendency to a lower burden for the home setting. The burden for the home setting was then unchanged from 3 weeks to 1 year, while outpatient rehabilitation showed a reduced burden over time. For the home setting, significant correlations to activity level were seen after the intervention. CONCLUSION: A positive effect of counselling was seen, as the home setting burden tends to be lower after the intervention, while outpatient rehabilitation seems to adjust with time. The results suggest that counselling reduces burden and the remaining burden is associated with the patient's ability.
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