| 1. |
- Al-Chalabi, Ammar, et al.
(författare)
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July 2017 ENCALS statement on edaravone
- 2017
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Ingår i: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. - : TAYLOR & FRANCIS LTD. - 2167-8421 .- 2167-9223. ; 18:7-8, s. 471-474
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Tidskriftsartikel (refereegranskat)abstract
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| 2. |
- Askmark, Håkan, et al.
(författare)
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Vitamin D deficiency in patients with myasthenia gravis and improvement of fatigue after supplementation of vitamin D3 : a pilot study
- 2012
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Ingår i: European Journal of Neurology. - : Wiley. - 1351-5101 .- 1468-1331. ; 19:12, s. 1554-1560
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disorder. Vitamin D has important roles both in the autoimmune response and in skeletal muscles. We determined the levels of 25-hydroxy vitamin D [25(OH)D] in patients with MG and in healthy subjects to determine whether vitamin D deficiency is present in MG and whether vitamin D supplementation has beneficial effects on fatigue. METHODS: Plasma levels of 25(OH)D were analyzed in 33 patients with MG (22 males; mean age, 58 years) and in 50 healthy age- and sex-matched blood donors, without vitamin D3 medication. MG composite score (MGC) assessed fatigue. 13 patients with MG without previous vitamin D3 supplementation were started on vitamin D3 supplementation (cholecalciferol) 800 IU/day, with a follow-up examination after 2.5-10 months (mean, 6 months). RESULTS: Patients with MG without pre-existing vitamin D3 supplementation (N = 16) had a mean MGC of 4.5 and lower plasma 25(OH)D levels (mean, 51 ± 19 nM) than healthy controls (69 ± 21 nM) (P = 0.017). Seventeen patients had pre-existing vitamin D3 supplementation, because of corticosteroid treatment, and their mean 25(OH)D was 79 ± 22 nM and mean MGC was 5.5. In the 13 patients who received cholecalciferol, 25(OH)D was overall increased at follow-up with 22% (P = 0.033) and MGC score improved with 38% (P = 0.05). CONCLUSIONS: Plasma 25(OH)D levels are significantly lower in patients with MG compared with healthy controls. As vitamin D has beneficial effects on the autoimmune response and on fatigue score in patients with MG, we suggest monitoring this parameter in patients with MG and supplementation with vitamin D3 when 25(OH)D levels are low.
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| 3. |
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| 4. |
- Ekegren, Titti, et al.
(författare)
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Maintained regulation of polyamines in spinal cord from patients with amyotrophic lateral sclerosis
- 2004
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Ingår i: Journal of the Neurological Sciences. - : Elsevier. - 0022-510X .- 1878-5883. ; 222:1-2, s. 49-53
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Tidskriftsartikel (refereegranskat)abstract
- Levels of the polyamines putrescine, spermidine, and spermine were investigated in postmortem spinal cord from seven patients with amyotrophic lateral sclerosis (ALS) and seven control subjects. The method consisted of precolumn derivatization of the polyamines, followed by high-performance liquid chromatography (HPLC) analysis and fluorescence detection. The stability of the polyamines was examined in rat spinal cord during the interval of 0–36 h postmortem. The levels of putrescine, spermidine, and spermine increased by 32%, 15%, and 2%, respectively. Polyamine levels did not differ significantly between the ALS group and the control group, suggesting a maintained regulation of polyamines in the end stage of the disease. However, an effect of gender on the levels of spermidine and spermine was observed. Levels of spermidine and spermine in the ventral horn region of female ALS patients were significantly higher in comparison with the same region of the male ALS group (p< 0.05). The female ALS group also presented significantly higher levels of spermidine in comparison with female controls (p< 0.05).
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| 5. |
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| 6. |
- Elf, Kristin, et al.
(författare)
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Alterations in muscle proteome of patients diagnosed with amyotrophic lateral sclerosis
- 2014
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Ingår i: Journal of Proteomics. - : Elsevier BV. - 1874-3919 .- 1876-7737. ; 108, s. 55-64
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Tidskriftsartikel (refereegranskat)abstract
- Amyotrophic lateral sclerosis (ALS) is a motor neuron disease characterized by progressive muscle paralysis. Currently clinical tools for ALS diagnostics do not perform well enough and their improvement is needed. The objective of this study was to identify specific protein alterations related to the development of ALS using tiny muscle biopsies. We applied a shotgun proteomics and quantitative dimethyl labeling in order to analyze the global changes in human skeletal muscle proteome of ALS versus healthy subjects for the first time. 235 proteins were quantified and 11 proteins were found significantly regulated in ALS muscles. These proteins are involved in muscle development and contraction, metabolic processes, enzyme activity, regulation of apoptosis and transport activity. In order to eliminate a risk to confuse ALS with other denervations, muscle biopsies of patients with postpolio syndrome and Charcot Marie Tooth disease (negative controls) were compared to those of ALS and controls. Only few proteins significantly regulated in ALS patients compared to controls were affected differently in negative controls. These proteins (BTB and kelch domain-containing protein 10, myosin light chain 3, glycogen debranching enzyme, transitional endoplasmic reticulum ATPase), individually or as a panel, could be selected for estimation of ALS diagnosis and development. Biological significance ALS is a devastating neurodegenerative disease, and luckily, very rare: only one to two people out of 100,000 develop ALS yearly. This fact, however, makes studies of ALS very challenging since it is very difficult to collect the representative set of clinical samples and this may take up to several years. In this study we collected the muscle biopsies from 12 ALS patients and compared the ALS muscle proteome against the one from control subjects. We suggested the efficient method for such comprehensive quantitative analysis by LC-MS and performed it for the first time using human ALS material. This gel- and antibody-free method can be widely applied for muscle proteome studies and has been used by us for revealing of the specific protein alterations associated with ALS.
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| 7. |
- Elf, Kristin, et al.
(författare)
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Vitamin D deficiency in patients with primary immune-mediated peripheral neuropathies
- 2014
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Ingår i: Journal of the Neurological Sciences. - : Elsevier BV. - 0022-510X .- 1878-5883. ; 345:1-2, s. 184-188
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: T cells are important in the immunopathology of immune-mediated peripheral neuropathies (PNP) and activated vitamin D regulates the immune response through increasing the amount of regulatory T cells. An association between vitamin D deficiency and polyneuropathy has been stipulated; hence we assessed whether patients with primary immune-mediated PNP have low vitamin D [25(OH)D] levels.METHODS: Plasma levels of 25(OH)D were analyzed in 26 patients with primary immune-mediated PNP, 50 healthy matched blood donors and 24 patients with motor neuron disease (MND). INCAT score was assessed in patients with Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy. ALSFRS-R score was applied to MND patients and the modified Rankin (mRankin) scale compared disability among patient groups.RESULTS: Mean 25(OH)D value in PNP patients was 40±16nmol/l, compared to 69±21nmol/l in healthy blood donors (p<0.001). MND patients had a higher mean 25(OH)D than PNP patients (59±26nmol/L; p=0.006) and comparable levels to healthy blood donors (p=0.15). Mean 25(OH)D value was not higher in PNP patients with pre-existing vitamin D3 supplementation of 800IU/day (N=6; 35±18nmol/L) than in unsupplemented PNP patients (42±16nmol). INCAT score ranged from 0 to 10 (mean 3.5) and ALSFRS-R ranged from 11 to 44 (mean 31). mRankin score was more severe in MND patients (mean 3.5) compared to PNP patients (mean 2.1).CONCLUSIONS: All patients with primary immune-mediated PNP were diagnosed with vitamin D deficiency and they had significantly lower 25(OH)D values than healthy control persons and MND patients. We suggest monitoring of vitamin D status in patients with autoimmune PNP, since immune cells are responsive to the ameliorative effects of vitamin D.
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| 8. |
- Fagius, Jan, et al.
(författare)
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Strong potential for baroreflex-governed sympathetic outflow revealed during nausea
- 2010
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Ingår i: Clinical Autonomic Research. - : Springer Science and Business Media LLC. - 0959-9851 .- 1619-1560. ; 20:6, s. 371-374
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Tidskriftsartikel (refereegranskat)abstract
- Muscle sympathetic nerve activity (MSNA) was recorded in two patients with amyotrophic lateral sclerosis. As expected, they exhibited a high level of MSNA at rest, with an inverse weak response to different maneuvers normally eliciting strong increase in MSNA. About 30 min after the intake of a glucose solution, they developed nausea with an extreme rise in MSNA and blood pressure. In one patient, a quantified analysis of this reaction could be done: the outflow was close to 200% above the already high resting level and >100% stronger than the response to any of the performed maneuvers. We regard this observation of importance, because it seems to unveil resources utilized only rarely, and strongly overcoming the "ceiling effect" that seemingly is a hindrance for sympathetic activation in subjects with high lever of MSNA at rest. An inhibitory "safety limit" might exist, the trespassing of which would damage the organism and thus occurs only during extraordinary circumstances.
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| 9. |
- Feresiadou, Amalia, et al.
(författare)
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Measurement of sCD27 in the cerebrospinal fluid identifies patients with neuroinflammatory disease
- 2019
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Ingår i: Journal of Neuroimmunology. - : Elsevier BV. - 0165-5728 .- 1872-8421. ; 332, s. 31-36
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Laboratory tests to assist in the diagnosis and monitoring of neuroinflammatory diseases are scarce. The soluble form of the CD27 molecule (sCD27) is shed in high concentrations by activated T cells and can be detected in the cerebrospinal fluid. The aim of this study was to investigate whether CSF quantitation of sCD27 could discriminate between inflammatory and non-inflammatory neurological diseases.METHODS: The concentration of sCD27 was measured using a commercially available ELISA in 803 well-defined subjects from a study cohort comprised of 338 patients with neuroinflammatory disease, 338 with non-inflammatory neurological disease and 127 controls without neurological disease.RESULTS: The median value of cerebrospinal fluid sCD27 was 64 pg/mL (IQR 0-200) in controls, 58 pg/mL (IQR 0-130) in patients with non-inflammatory disease and 740 pg/mL (IQR 230-1800) in patients with inflammatory disease. The likelihood ratio of having an inflammatory disease was 10 (sensitivity 74% and specificity 93%) if the sCD27 concentration was >250 pg/mL. In patients with a known inflammatory condition, the likelihood ratio of having an infection was 10 (sensitivity 40% and specificity 96%) if the sCD27 concentration was >2500 pg/mL.CONCLUSIONS: The likelihood of having an inflammatory neurological condition is increased with elevated concentrations of sCD27 in cerebrospinal fluid. Rapid tests of sCD27 should be developed to assist clinicians in diagnosis of neuroinflammatory disease.
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| 10. |
- Feresiadou, Amalia, et al.
(författare)
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Recurrence of Susac Syndrome following 23 Years of Remission
- 2014
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Ingår i: Case Reports in Neurology. - : S. Karger AG. - 1662-680X. ; 6:2, s. 171-175
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Tidskriftsartikel (refereegranskat)abstract
- Susac syndrome is an autoimmune microangiopathy affecting the brain, retina and inner ear (cochlea and semicircular canals), leading to encephalopathy, branch retinal artery occlusions (BRAOs) and asymmetric neurosensory hearing loss, respectively. The natural history and long-term prognosis are variable as the disease has been shown to be monophasic and self-limiting, polycyclic or chronic continuous. We describe a 35-year-old woman who presented with a sudden hearing loss in the left ear in the 37th week of her second pregnancy. She subsequently developed BRAO in the right eye 2.5 months after having given birth. MRI findings included round lesions in the corpus callosum which are pathognomonic for Susac syndrome. Previous patient records documented encephalopathy, sudden deafness of the right ear and visual field defects in the left eye at the age of 12, followed by permanent hearing and visual defects. We expand on the variability in the course of Susac syndrome as recurrence may occur after as long as 23 years. Cases of monophasic self-limiting Susac syndrome may in fact turn polycyclic with an interval of more than 2 decades between the bouts of the disease. In these cases, suspecting the development of exacerbation early is important in order to start the treatment promptly.
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| 11. |
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| 12. |
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| 13. |
- Grundström, Eva, et al.
(författare)
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Increased expression of glial cell line-derived neurotrophic factor mRNA in muscle biopsies from patients with amyotrophic lateral sclerosis
- 1999
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Ingår i: Journal of the Neurological Sciences. - 0022-510X .- 1878-5883. ; 162:2, s. 169-173
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Tidskriftsartikel (refereegranskat)abstract
- The expression of glial cell line-derived neurotrophic factor (GDNF) mRNA and brain-derived neurotrophic factor (BDNF) mRNA were studied in muscle biopsies from five patients with amyotrophic lateral sclerosis (ALS), six patients with other neuromuscular diseases and eight healthy control persons. All five patients with ALS had higher GDNF mRNA expressions in their biopsies than the healthy control group (almost a three fold increase). Among the other patients only one, who had a rapidly progressing toxic polyneuropathy, showed a GDNF mRNA expression above those of the controls. The BDNF mRNA expressions in the biopsies from the ALS patients were in the same range as those from the healthy controls, although the mean value of the ALS patients was higher. The only biopsy that showed a markedly higher BDNF mRNA expression was taken from one patient with progressive muscular atrophy. These results suggest that increased GDNF mRNA expression in muscle is an unspecific response to ongoing denervation and that this response is maintained in ALS, at least temporarily. If increased GDNF mRNA in muscle proves to be a constant finding in ALS the rationale for the use of GDNF as a therapeutic agent in ALS must be questioned.
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| 14. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(författare)
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A prospective study of quality of life in amyotrophic lateral sclerosis patients
- 2017
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 136:6, s. 631-638
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTS: The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time.MATERIALS AND METHODS: Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS). Data were collected from diagnosis and thereafter, every six months for a period of two years. Twelve patients completed the 24-month follow-up.RESULTS: Family, friends and own physical health were important for overall quality of life, from diagnosis and during the disease progression. Most patients had good quality of life, which remained stable, despite changed physical functions. Several patients scored above the cut-off score for doubtful and clinical anxiety and depression early on after diagnosis, and there was a significant decrease in anxiety over time. Soon after diagnosis, there was a correlation between depression and quality of life.CONCLUSION: The family, social relations and own physical health are important for overall quality of life in patients with ALS. Thus, supporting the family and facilitating so that patients can continue to stay in contact with friends are important aspects during the disease. Conducting an early screening for depression can be important for preventing decreased quality of life.
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| 15. |
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| 16. |
- Jakobsson Larsson, Birgitta, et al.
(författare)
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Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis
- 2014
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 23:21-22, s. 3148-3155
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies.BACKGROUND: Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce.DESIGN: This was a prospective study with a longitudinal and descriptive design.METHODS: A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale.RESULTS: The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients' psychological well-being was correlated with the use of different coping strategies.CONCLUSIONS: Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients.RELEVANCE TO CLINICAL PRACTICE: The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.
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| 17. |
- Jakobsson Larsson, Birgitta, et al.
(författare)
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Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression
- 2016
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Ingår i: Journal of the Neurological Sciences. - : Elsevier BV. - 0022-510X .- 1878-5883. ; 361, s. 235-242
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Tidskriftsartikel (refereegranskat)abstract
- To evaluate coping strategies among patients with Amyotrophic lateral sclerosis starting with diagnosis and during the disease progression, as well as investigate changes and correlations between coping strategies, emotional well-being and physical function. A total of 36 patients participated in the study. The patients filled out the Hospital Anxiety and Depression Scale and the Motor Neuron Disease Coping Scale. Physical function was measured using the revised ALS functional rating scale. Data were collected regularly from diagnosis and over a two years period. As a way to cope with the disease patients relied on both problem focused and emotional focused strategies. The use of coping strategies remained stable. Both physical disabilities and emotional well-being was related to some coping strategies, with some variation during the disease progression. Moreover, some coping strategies were related to symptoms of anxiety and depression. Irrespective of whether the coping strategies affect the emotional well-being or vice versa, the results show the importance of early and continuous evaluation of coping and emotional well-being to ease the emotional distress and provide support to the patient so that he/she can cope with the disease during the disease progression.
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| 18. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(författare)
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Quality of life among relatives of patients with amyotrophic lateral sclerosis : A prospective and longitudinal study.
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 20:2, s. 203-211
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression.METHOD: A total of 31 relatives were included. Data collection was performed at five time points: 1-3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R).RESULTS: The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives' iQoL correlated with emotional well-being and the patient's physical function at different time points.SIGNIFICANT OF RESULT: Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives' iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives' own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.
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| 19. |
- Jakobsson Larsson, Birgitta, 1965-
(författare)
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Quality of life, Coping and need for Support during the ALS disease trajectory
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to investigate quality of life, coping and emotional distress (i.e. anxiety and depression) among newly diagnosed ALS patients. An additional aim was also to investigate relatives’ experiences of the care for the patient and the support they received for themselves during the disease progression.The most nominated areas of importance for the patient’s overall QoL were family, friends and own physical health. Most patients rated their QoL as good, which did not change at subsequent measurement, despite their physical function having changed for the worse during disease progression. Some patients had symptoms of clinical anxiety and depression during the first year after diagnosis. The total quality of life score did not correlate with physical function but with depression early on after diagnosis. Most patients used support and independence as strategies to cope with the disease during the first six months after diagnosis. There were few changes early on after the diagnosis, and the patients used several different strategies. The results show that the use of coping strategies remained stable over time. Both physical function and emotional distress correlated significant with different coping strategies, with some variation during the disease progression. Relatives experienced the care of their loved one as positive and based on the patient’s needs and desires. The treatment, knowledge, support and help from the staff were important for the relatives’ feeling of security. Different factors influence the use of support for themselves. The relatives did not think of their own needs, but their focus was rather on the patient.The results of the thesis highlight the importance of providing support both to patients and their relatives during the disease progression. With early and regular evaluation on quality of life, coping and emotional well-being among the patients, the health professionals may be able to support the patients based on their specific needs, which probably will increase their quality of life.
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| 20. |
- Jakobsson Larsson, Birgitta, 1965-, et al.
(författare)
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Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory
- 2023
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Ingår i: Journal of the Neurological Sciences. - : Elsevier. - 0022-510X .- 1878-5883. ; 455
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTS: The aim of this study was to describe the presence of anxiety and depression among patients with Amyotrophic Lateral Sclerosis (ALS) and their relatives from diagnosis and during the disease progression. An additional aim was to explore if the patient's physical function correlated with the patients' or relatives' anxiety and depression.METHODS: A prospective and longitudinal study, including 33 patients with ALS and their relatives who filled out the Hospital Anxiety and Depression Scale (HADS) at the time of diagnosis and over a period of two years. The patient's physical function was measured with the revised Amyotrophic Lateral Sclerosis Functional and Rating Scale (ALS FRS-R).RESULTS: The results showed that many patients (45%) and relatives (58%) had symptoms of anxiety and that 13% of the patients and 29% of the relatives had symptoms of depression soon after the patient had been diagnosed with ALS. The prevalence of anxiety decreased over time in the group of patients but remained stable in the group of relatives. Relatives had more symptoms of anxiety compared to patients. There was a correlation between the patient's physical function and HADS in the group of relatives; however, no correlation was found in the group of patients.CONCLUSION: The results showed that many patients and relatives suffered from symptoms of anxiety quite soon after their diagnosis, and that many relatives had symptoms of anxiety during the disease trajectory. This highlights the need to continuously measure patients' anxiety/depression level but also to pay attention to symptoms among relatives.
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| 21. |
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| 22. |
- Larsson, Birgitta Jakobsson, et al.
(författare)
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Relatives of patients with amyotrophic lateral sclerosis : Their experience of care and support
- 2015
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:6, s. 1569-1577
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.METHOD: A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.RESULT: The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.SIGNIFICANCE OF RESULTS: It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.
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| 23. |
- Malmstroem, Nina, et al.
(författare)
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Living with a parent with ALS-adolescents' need for professional support from the adolescents' and the parents' perspectives
- 2023
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Ingår i: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. - : Taylor & Francis. - 2167-8421 .- 2167-9223. ; 24:7-8, s. 727-735
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Tidskriftsartikel (refereegranskat)abstract
- AimThe aim of the study was to qualitatively investigate the adolescents' need for professional support when a parent has amyotrophic lateral sclerosis (ALS) - from the adolescents' and the parents' perspectives.MethodsA total of 37 individual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26 parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis.ResultsBoth adolescents and parents described the adolescents as needing professional support but found it difficult to articulate this need. However, the results indicate that the adolescents needed help in bringing manageability into their lives due to the uncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not forgotten in the disease context and that their needs for being involved as well as for obtaining information and understanding, was addressed. The importance of offering the adolescents support early was emphasized, but also of actively helping the families to master challenges in their everyday life. Support adapted to each family's unique situation and preferences was desired, as the adolescents' need for support seemed to be individual, disease-dependent and varied during different phases.ConclusionGiven the adolescents' need for information and understanding, healthcare professionals must actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given the opportunity to be involved based on their own conditions, as well as to support the families to strengthen their communication.
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| 24. |
- Malmström, Nina, et al.
(författare)
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Adolescents' challenging and grief-filled transitions when living with a parent with ALS : a qualitative interpretive study
- 2024
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Ingår i: Social Science and Medicine. - : Elsevier. - 0277-9536 .- 1873-5347. ; 354
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The study aimed to explore the meaning for adolescents of living with a parent with amyotrophic lateral sclerosis (ALS).Methods: The design is qualitative. Interviews were conducted between December 2020 and April 2022 with 11 adolescents (8-25 y), living in households with a parent with ALS in Sweden. The analysis was phenomenologically hermeneutical.Results: The adolescents were in a difficult and exposed situation, especially if the parent had a severe disability and assistant care providers were in the home. Witnessing the gradual loss of the parent in an indefinite battle against time, while still needing them, elicited grief-filled and hard-to-manage emotions. Everyday life was turned upside down, resulting in greater responsibility for the adolescents, not only in helping with household chores and assisting the ill parent, but also in emotionally protecting both parents. It forced the adolescents to mature faster and put their own life on hold, triggering experiences of being limited. This, together with changing family roles yet being more attached to home, reinforced the imbalance in the adolescents' lives. The interpreted whole of the adolescents' narratives revealed that living with a parent with ALS meant a challenging and grieving transition during an already transition-filled adolescence, which left the adolescents struggling to keep a foothold on a life torn apart.Conclusion: The unbalanced life situation may hinder the adolescents' identity formation and emancipation, which are developmentally important for managing a healthy and independent adulthood. The results emphasize the importance of early targeted support to reach this vulnerable group in order to secure their health.
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| 25. |
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| 26. |
- Mattsson, Peter, et al.
(författare)
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Physical fitness, but not muscle strength, is a risk factor for death in amyotrophic lateral sclerosis at an early age
- 2012
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Ingår i: Journal of Neurology, Neurosurgery and Psychiatry. - : BMJ. - 0022-3050 .- 1468-330X. ; 83:4, s. 390-394
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Tidskriftsartikel (refereegranskat)abstract
- Background Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disorder mainly characterised by motor symptoms. Extensive physical activity has been implicated in the aetiology of ALS. Differences in anthropometrics, physical fitness and isometric strength measured at 18-19 years were assessed to determine if they are associated with subsequent death in ALS. Method Data on body weight and height, physical fitness, resting heart rate and isometric strength measured at conscription were linked with data on death certificates in men born in 1951-1965 in Sweden (n=809 789). Physical fitness was assessed as a maximal test on an electrically braked bicycle ergometer. Muscle strength was measured as the maximal isometric strength in handgrip, elbow flexion and knee extension in standardised positions, using a dynamometer. Analyses were based on 684 459 (84.5%) men because of missing data. A matched case control study within this sample was performed. The population was followed until 31 December 2006, and 85 men died from ALS during this period. Results Weight adjusted physical fitness (W/kg), but not physical fitness per se, was a risk factor for ALS (OR 1.98, 95% CI 1.32 to 2.97), whereas resting pulse rate, muscle strength and other variables were not. Conclusions Physical fitness, but not muscle strength, is a risk factor for death at early age in ALS. This may indicate that a common factor underlies both fitness (W/kg) and risk of ALS.
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| 27. |
- Nygren, Gunnar, 1954-, et al.
(författare)
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Förändring och tröghet : framtidsspaningens svåra konst
- 2019
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Ingår i: På väg mot medievärlden 2030. - Lund : Studentlitteratur AB. - 9789144125060 ; , s. 11-27
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- På samma sätt som det inte är möjligt att säga något om klimatförändringar på grundval av vädret enskilda år, är det heller inte möjligt att säga så mycket om medieutvecklingen utifrån förändringar mellan två år. Det är nödvändigt att anlägga ett mycket längre tidsperspektiv, och det är också viktigt att studera de faktorer i omvärlden som påverkar medierna. Enskilda företagsledningar har ingen möjlighet att styra den övergripande medieutvecklingen, men däremot kan de reagera och möta den på den på olika sätt. För att få förståelse för medieutvecklingen behövs både stadiga backspeglar och god omvärldskunskap, parallellt med ett visionärt och framåtblickande prognosticerande.Precis vid sekelskiftet, år 2000, gavs boken På väg mot medievärlden 2020 ut för första gången. Den var en fortsättning av en seminarieserie vid JMK på Stockholms universitet, och blev en lärobok för studenter på universiteten. Boken kommer nu 2019 i sin sjätte och helt omarbetade upplaga. I boken medverkar 17 medieforskare från de flesta universitet med medieforskning, och de skriver om allt från teknikutveckling, sociala medier och läsardata till etik och relationen mellan journalistik och politik.År 2000 var framtidstron stark och år 2020 låg behagligt långt bort. Nu är vi nästan framme vid 2020, och siktet är därför istället inställt på 2030. Men hur gick det med alla de förhoppningar och farhågor som forskarna diskuterade i den första antologin? Och vad vågar vi tro om 2030?
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| 28. |
- Nygren, Gunnar, 1954-, et al.
(författare)
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Tretton år senare
- 2013. - 5
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Ingår i: På väg mot medievärlden 2020. - Lund : Studentlitteratur. - 9789144082554 ; , s. 13-25
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Den första upplagan av På väg mot medievärlden 2020 är daterad i februari år 2000. Millennieskiftet hade just firats med champagne och fyrverkerier och datorsystemen hade klarat den befarade millenniebuggen. Framtidstron var stor och år 2020 låg behagligt långt bort.När denna femte upplaga av samma bok går i tryck har två tredjedelar av tiden gått. Omläsningar av framtidsscenarier är förvisso oftast roligare att läsa för andra än för de som skrivit dem, eftersom spådomar om framtiden ofta tenderar att präglas mer av samtidens trender än av framtiden i sig – och den framtid man siat om infinner sig sällan. Det är helt enkelt svårt att förutsäga framtiden. Men ändå, hur gick det med alla de förhoppningar och farhågor som forskarna diskuterade i en seminarieserie i slutet av 1990-talet, och som resulterade i en antologi med titeln På väg mot medievärlden 2020?
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| 29. |
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| 30. |
- Nygren, Ingela, 1961-
(författare)
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ALS – a Clinical Thesis
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Amyotrophic lateral sclerosis (ALS) is characterized by a progressive loss of upper and lower motor neurons, resulting in muscle weakness and death from respiratory failure within 3-5 years after onset. The incidence is 1.5-2.7/100,000 inhabitants. 5-10% of all cases are hereditary. The aetiology of sporadic ALS is still unknown. The only neuroprotective drug approved for the treatment of ALS is riluzole, a glutamate-antagonist, which has shown to improve survival. We evaluated if riluzole sales statistics can be used as a method for estimating the prevalence of ALS/motor neuron disease in Sweden. We found that this method, which is less time consuming than conventional methods, could be used as a crude marker for the prevalence. In a longitudinal study of overall Quality of Life (QoL) in ALS we found that QoL changes only slightly over time despite disease progression. ALS does not necessarily result in a low QoL. Growth factors are important for the survival of neurons. In ALS we found increased or normal levels of GDNF mRNA and BDNF mRNA in muscle biopsies, VEGF in serum and spinal cord and FGF-2 in serum and cerebrospinal fluid. There is thus no deficit of these growth factors although there may be a relative lack because of high demands of the motor neurons. Polyamines are small aliphatic molecules that are important for the function of cells. The level of the polyamines spermidine and spermine were increased in red blood cells in both patients with ALS and patients with Parkinson’s disease, suggesting that polyamines may have a role for the neurodegenerative process. Polyamines in spinal cord were of the same level in the patients with ALS and in controls, indicating a maintained regulation of polyamines at the end-stage of the disease.
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| 31. |
- Nygren, Ingela, et al.
(författare)
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High resting level and weak response of baroreflex-governed sympathetic outflow in amyotrophic lateral sclerosis
- 2011
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Ingår i: Muscle and Nerve. - : Wiley. - 0148-639X .- 1097-4598. ; 43:3, s. 432-440
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Tidskriftsartikel (refereegranskat)abstract
- Both altered sympathetic function and insulin resistance have been observed in amyotrophic lateral sclerosis (ALS). Insulin is a sympathetic stimulator. We recorded muscle sympathetic nerve activity (MSNA) by microneurography in 9 patients with ALS and 9 healthy controls during rest. We also initiated a number of sympathoexcitatory maneuvers, including intake of 100 g of glucose. Patients showed reduced glucose tolerance and a higher heart rate and higher level of MSNA at rest than controls (61.0 ± 15.2 vs. 41.2 ± 5.8 bursts/min, P = 0.006); baroreflex inhibitory influence was present. In contrast, MSNA in ALS patients responded more weakly to maneuvers. This inverse relationship is interpreted as a "ceiling effect," as ALS patients use nearly maximal MSNA capacity already at rest and do not have sympathetic failure. The increased level of MSNA may be a primary feature of ALS, but insulin stimulation may also contribute. Our findings are assessed in relation to previous, sometimes seemingly contradictory observations.
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| 32. |
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| 33. |
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| 34. |
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| 35. |
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| 36. |
- Nygren, Jens M., 1976-, et al.
(författare)
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Strengthening Digital Transformation and Innovation in the Health Care System : Protocol for the Design and Implementation of a Multidisciplinary National Health Innovation Research School
- 2023
-
Ingår i: JMIR Research Protocols. - Toronto, ON : JMIR Publications. - 1929-0748. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Background: Digital health technologies have the potential to transform health care services to be more cost-effective, coordinated, and accessible on equal terms for entire populations. In the future, people will be assisted by such technologies to monitor their health status, take preventive measures, and have more control of their health situation. An increase in digital supplementation or substitution of physical care visits can potentially add value to patients and care providers by increasing accessibility, safety, and quality of care. However, health care organizations struggle with the challenges of developing and implementing digital health technologies and services in practice. As a response to this, we have developed a national multidisciplinary research school to increase competence and capacity for research on the development, implementation, and dissemination of digital health technology solutions. The overall aim of the research school is to increase national competence and capacity for the development, implementation, and dissemination of digital health technology to increase the preparedness to support and facilitate the ongoing digital transformation in the health care system.Objective: The purpose of this paper is to outline the protocol for the development and implementation of a national multidisciplinary doctoral education program of health innovation supporting digital transformation in the health care system.Methods: A national multidisciplinary research school for health innovation was planned in collaboration between 7 Swedish universities and their partners from industry and the public sector. The research school will run over 6 years, of which 5 years are dedicated for the doctoral education program and 1 year for the project start-up and closing. In this paper, we outline the methodological approach of the research school; the combining of knowledge and expertise of the universities that are important to run the research school; the jointly formulated research-oriented and societally relevant research focus, goals, and objectives for the research school; the established and developed relationships with partners from industry and the public sector for joint research training projects; the forms of collaboration in the research school; and the format of the doctoral education process.Results: The research school was funded in December 2021 and started in March 2022. The research school starts with an initiation period from March 2022 to December 2022 where the infrastructure and the action plans to run the school are set up. The PhD projects start in January 2023, and these projects will be completed in 5 years. Additional activities within the research program are doctoral courses, networking activities, and dissemination of results.Conclusions: The network of several partners from industry, public sector, and academia enables the research school to pose research questions that can contribute to solving relevant societal problems related to the development, evaluation, implementation, and dissemination of methods and processes assisted by digital technologies. Ultimately, this will promote innovation to improve health outcomes, quality of care, and prioritizations of resources. © Jens M Nygren, Lina Lundgren, Ingela Bäckström, Petra Svedberg. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 31.05.2023. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.
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| 37. |
- Pettersson, Anna, et al.
(författare)
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Effects of a dietary intervention on gastrointestinal symptoms after prostate cancer radiotherapy : Long-term results from a randomized controlled trial
- 2014
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Ingår i: Radiotherapy and Oncology. - : Elsevier BV. - 0167-8140 .- 1879-0887. ; 113:2, s. 240-247
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND PURPOSE:To evaluate the long-term effects of dietary intervention on gastrointestinal symptoms after highly dose-escalated radiotherapy for localized prostate cancer, using boost with protons or high-dose-rate brachytherapy.MATERIALS AND METHODS:Patients were randomized to an intervention group (n=64) advised to reduce insoluble dietary fiber and lactose intake, or to a standard care group (n=66) advised to continue their usual diet. Gastrointestinal symptoms, other domains of health-related quality of life (HRQOL), and dietary intake were evaluated for ⩽24months post-radiotherapy with the European Organization for Research and Treatment of Cancer quality-of-life questionnaires QLQ-C30 and QLQ-PR25, Gastrointestinal Side Effects Questionnaire, and Food Frequency Questionnaire. The effect of the intervention on gastrointestinal symptoms was evaluated using generalized estimating equations.RESULTS:Dietary intervention had no obvious effect on long-term gastrointestinal symptoms or HRQOL. The intervention group markedly reduced their dietary fiber and lactose intake during radiotherapy, but adherence tended to decline over time. The vast majority of long-term gastrointestinal symptoms were reported as 'a little', with a noticeable difference from pre-treatment only for unintentional stool leakage, limitations on daily activities, and mucus discharge.CONCLUSION:Long-term gastrointestinal symptoms were predominantly mild, and dietary intervention was not superior to a usual diet in preventing these symptoms.
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| 38. |
- Piehl, F., et al.
(författare)
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Efficacy and Safety of Rituximab for New-Onset Generalized Myasthenia Gravis The RINOMAX Randomized Clinical Trial
- 2022
-
Ingår i: Jama Neurology. - : American Medical Association (AMA). - 2168-6149 .- 2168-6157.
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Tidskriftsartikel (refereegranskat)abstract
- IMPORTANCE Rituximab is a third-line option for refractory generalized myasthenia gravis (MG) based on empirical evidence, but its effect in new-onset disease is unknown. OBJECTIVE To investigate the efficacy and safety of rituximab compared with placebo as an add-on to standard of care for MG. DESIGN, SETTING, AND PARTICIPANTS This randomized, double-blind, placebo-controlled study took place throughout 48 weeks at 7 regional clinics in Sweden. Key inclusion criteria were age older than 18 years, onset of generalized symptoms within 12 months or less, and a Quantitative Myasthenia Gravis (QMG) score of 6 or more. Patients were screened from October 20, 2016, to March 2, 2020. Key exclusion criteria included pure ocular MG, suspected thymoma, previous thymectomy, and prior noncorticosteroid immunosuppressants or high doses of corticosteroids. INTERVENTIONS Participants were randomized 1:1 without stratification to a single intravenous infusion of 500 mg of rituximab or matching placebo. MAIN OUTCOMES AND MEASURES Minimal disease manifestations at 16 weeks defined as a QMG score of 4 or less with prednisolone, 10 mg or less daily, and no rescue treatment. RESULTS Of 87 potentially eligible patients, 25 were randomized to rituximab (mean [SD] age, 67.4 [13.4] years; 7 [28%] female) and 22 to placebo (mean [SD] age, 58 [18.6] years; 7 [32%] female). Compared with placebo, a greater proportion with rituximab met the primary end point; 71% (17 of 24) in the rituximab group vs 29% (6 of 21) in the placebo group (Fisher exact test P = .007; probability ratio, 2.48 [95% CI, 1.20-5.11]). Secondary end points, comparing changes in Myasthenia Gravis Activities of Daily Living and Myasthenia Gravis Quality of Life at 16 weeks with QMG at 24 weeks did not differ between groups with censoring for rescue treatment (per-protocol analysis) but were in favor of active treatment when rescue treatment was taken into account by worst rank imputation (post hoc analysis). Rescue treatments were also more frequent in the placebo arm (rituximab: 1 [4%]; placebo, 8 [36%]). One patient in the placebo arm had a myocardial infarction with cardiac arrest and 1 patient in the active arm experienced a fatal cardiac event. CONCLUSIONS AND RELEVANCE A single dose of 500 mg of rituximab was associated with greater probability of minimal MG manifestations and reduced need of rescue medications compared with placebo. Further studies are needed to address long-term benefit-risk balance with this treatment.
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| 39. |
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På väg mot medievärlden 2020 : Journalistik, teknik, marknad
- 2013. - 5 uppl
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- Medievärlden förändras snabbt. Nya medieformer växer fram samtidigt som de traditionella medierna förändras. En teknisk konvergens gör att medieformerna glider samman i nätbaserade och mobila medier, samtidigt som medierna också blir mer nischade och publikerna fragmenteras. De ekonomiska drivkrafterna blir allt viktigare, mönstren i medieanvändningen ritas om och nya informationsklyftor skapas. Förutsättningarna för det offentliga samtalet och de demokratiska processerna förändras.
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| 40. |
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På väg mot medievärlden 2030 : Journalistikens villkor och utmaningar
- 2019
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- När internet nådde medieanvändarna i mitten av 1990-talet var det få som kunde ana vilken omvälvning av hela samhället som då påbörjades. Den tekniska konvergensen har gjort att medieformer glidit samman samtidigt som publikerna nischats och kunnat bli medskapare av innehåll. Digitaliseringen har lett till att de ekonomiska förutsättningarna förändrats genom att annonspengarna i stor utsträckning hamnar hos Google och Facebook och inte hos de journalistiska medierna. Internet har inte blivit den demokratiska plattform som många hoppades på innan sekelskiftet, utan lika mycket en plattform för hot och hat. Samtidigt har människor fått plattformar att uttrycka sig på som alls inte fanns för 20 år sedan. De unga som vuxit upp i den digitala världen har ett annat förhållningssätt till medievärlden än de som vuxit upp i den gamla analoga världen.Förändringen leder till utmaningar för journalistiken – ekonomiska och tekniska, sociala och demokratiska utmaningar. I denna sjätte och helt omarbetade upplaga av På väg mot medievärlden 2030 analyserar medieforskare från olika ämnesområden och lärosäten hur dessa utmaningar kan se ut, och vad som är rimligt att tro om de kommande tio åren.
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| 41. |
- Rostedt Punga, Anna, et al.
(författare)
-
Monozygous twins with neuromuscular transmission defects at opposite sides of the motor endplate
- 2009
-
Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 119:3, s. 207-211
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Tidskriftsartikel (refereegranskat)abstract
- Disorders affecting the postsynaptic side of the neuromuscular junction include autoimmune myasthenia gravis (MG) as well as some of the congenital myasthenic syndromes (CMS). Lambert-Eaton myasthenic syndrome (LEMS) is an acquired autoimmune neuromuscular disorder in which autoantibodies are directed against the presynaptic calcium channels. Here we describe two monozygous twin brothers: case 1 was diagnosed with an indeterminate form of acquired postsynaptic neuromuscular junction defect at age 32 and case 2 with LEMS at age 47. Case 1 presented clinically with mild generalized myasthenic weakness, neurophysiological examination revealed disturbed neuromuscular transmission along with probable myositis and serum analysis regarding antibodies against the acetylcholine receptor and muscle-specific tyrosine kinase was negative. Case 2 presented with proximal muscle fatigue accompanied by areflexia at rest and antibodies against the P/Q-type voltage-gated calcium channels were present. Neurophysiologically, case 2 had reduced baseline compound motor action potential amplitudes on neurography, decrement on low-frequency repetitive nerve stimulation (RNS) and pathological increment on high frequency RNS. To our knowledge this is the first case report of its kind and adds an intriguing contrast to the more common diagnosis of CMS in monozygous twins.
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| 42. |
- Skärsäter, Ingela, 1952-, et al.
(författare)
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Theme Health Innovation at Halmstad University - research, education and collaboration for welfare technology
- 2015
-
Ingår i: Abstracts: 19th International Philosophy of Nursing Society (IPONS) conference August 24-26, 2015 Karolinska Institutet, Stockholm, Sweden. - Stockholm : Karolinska Institutet. ; , s. 41-41
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Konferensbidrag (refereegranskat)abstract
- In face of escalating health care costs, new technology holds great promise for innovative solutions and new more sustainable health care model. Welfare technology around a person allowing for greater autonomy and control in health issues and access to tailored information and personalized health behavior interventions. While this offers good opportunities for both public health impact, it also emphasizes the need for properly knowledge base and organizational structure to support a person- centred approach in the development of welfare technology in society. Halmstad University initiated in 2014 a thematic research and educational initiative that has been named Theme Health Innovation. The initiative includes research, education and interaction with the community, region and industry, which in collaboration can contribute with innovative and sustainable solutions to social challenges in the health field. The starting point for the work is action based on societal and individual needs and development of venues for collaboration between different actors and levels of organization. Theme Health Innovation aims to develop and affect people's ability to maintain and promote their health and prevent ill health. Health Innovations developed in encounters between different knowledge, skills and experiences, both within the university's research and education in collaboration with industry and the public sector. Health Innovations that are developed should be based on the needs from the people who will use the innovation, thus have an end user perspective. At the conference, the Theme Health Innovation will be presented including the organizational structure, research as well as training in higher education that support the welfare technical development.
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| 43. |
- Wadbring, Ingela, 1964-, et al.
(författare)
-
13 år senare
- 2013
-
Ingår i: På väg mot medievärlden 2020. - Lund. - 9789144082554
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 44. |
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| 45. |
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| 46. |
- Wijk, Helle, 1958, et al.
(författare)
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Verksamhetsförlagd utbildning på avancerad nivå : ny utmaning för specialistutbildningar för sjuksköterskor
- 2009
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Ingår i: Vård i Norden. - København : Sjuksköterskornas samarbete i Norden. - 0107-4083 .- 1890-4238. ; 29:94, s. 41-43
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this article is to discuss challenges in the development of Specialist Nursing Educations as a result of the 2007 Swedish Higher EducationReform: the implementation of the so-called Bologna process. Certain challenges follow this reform, particularly since the specialist nursingprogrammes will be part of the second cycle of the higher education system, and it will be possible to combine the professional degree witha masters degree (one year). Possible strategies in four areas related to the Specialist Nursing Education are discussed: integration of researchbasedknowledge, experienced-based knowledge, improvement knowledge, and strategies for collaboration between university institutions andclinics. Specific didactical issues are raised.
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| 47. |
- Åkerblom, Ylva, 1967-, et al.
(författare)
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Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases
- 2021
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Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 20
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Tidskriftsartikel (refereegranskat)abstract
- Background: Up to 85% of people with motor neuron disease (MND) report pain, but whether pain has negative impact on quality of life is unclear. The aim was to study associations between pain, disease severity and individual quality of life (IQOL) in patients with MND.Methods: In this cross sectional study, 61 patients were recruited from four multidisciplinary teams in Sweden, whereof 55 responded to the pain measure (The Brief Pain Inventory – Short form) and were included in the main analyses. Disease severity was measured with the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version, and individual quality of life was measured with a study-specific version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting.Results: Forty-one (74%) of the participants who answered BPI-SF (n = 55) reported pain. Thirty-nine (71%) of those reported pain during the past 24 h. The severity of pain was on average moderate, with eight participants (14%) reporting severe pain (PSI ≥ 7). Satisfaction with IQOL for the entire sample was good (scale 1-7, where 1 equals poor quality of life): median 5, interquartile range (IQR) 2.75 and there was no difference in satisfaction with IQOL between those reporting pain/not reporting pain (median 5, IQR 2/median 5, IQR 3.5, Mann-Whitney U = 249, p = 0.452). There was neither any correlation between pain severity and satisfaction with IQOL, nor between disease severity and satisfaction with IQOL.Conclusions: The results add to the hypothesis that associations between non-motor symptoms such as pain prevalence and pain severity and IQOL in MND are weak. Pain prevalence was high and the results pointed to that some participants experienced high pain severity, which indicate that pain assessments and pain treatments tailored to the specific needs of the MND population should be developed and scientifically evaluated.
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| 48. |
- Öthman, Mezin, et al.
(författare)
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Initial Experience of the Levodopa–Entacapone–Carbidopa Intestinal Gel in Clinical Practice
- 2021
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Ingår i: Journal of Personalized Medicine. - : MDPI. - 2075-4426. ; 11:4
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Tidskriftsartikel (refereegranskat)abstract
- Patients in fluctuating stages of Parkinson’s disease (PD) require device-aided treatments. Continuous infusion of levodopa–carbidopa intestinal gel (LCIG) is a well-proven option in clinical practice. We now report the first clinical experience of levodopa–entacapone–carbidopa intestinal gel (LECIG) therapy. An observational study of the first patients to start LECIG in our clinic was performed. Twenty-four patients (11 females, 13 males) were included. The median age was 71.5 years, and the median duration since PD diagnosis was 15.5 years. The median treatment duration was 305 days. Median doses were: 6.0 mL as morning dose, 2.5 mL/h as infusion rate, and 1.0 mL as extra dose. Half of the patients were switched directly from LCIG. These patients express improvements in the size and weight of the pump. Furthermore, most of them considered the new pump to be improved regarding user-friendliness. Six patients discontinued LECIG, three due to diarrhea, one due to hallucinations and two deceased (one cardiac arrest and one COVID-19). LECIG has shown to be possible to use in patients with PD, efficacy and safety as expected. Patients are generally happy with the size and usability of the pump, but some technical improvements of the software are warranted, as well as larger, prospective studies.
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