| 1. |
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| 2. |
- Hagell, Peter, et al.
(författare)
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Apomorphine formulation may influence subcutaneous complications from continuous subcutaneous apomorphine infusion in Parkinson's disease
- 2020
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Ingår i: Journal of Neurology. - 0340-5354 .- 1432-1459. ; 267:11, s. 3411-3417
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Tidskriftsartikel (refereegranskat)abstract
- Continuous subcutaneous (s.c.) apomorphine infusion is an effective therapy for Parkinson's disease (PD), but a limitation is the formation of troublesome s.c. nodules. Various chemically non-identical apomorphine formulations are available. Anecdotal experiences have suggested that shifting from one of these (Apo-Go PumpFill®; apoGPF) to another (Apomorphine PharmSwed®; apoPS) may influence the occurrence and severity of s.c. nodules. We, therefore, followed 15 people with advanced PD (median PD-duration, 15 years; median "off"-phase Hoehn and Yahr, IV) on apoGPF and with troublesome s.c. nodules who were switched to apoPS. Data were collected at baseline, at the time of switching, and at a median of 1, 2.5, and 7.3 months post-switch. Total nodule numbers (P < 0.001), size (P < 0.001), consistency (P < 0.001), skin changes (P = 0.058), and pain (P ≤ 0.032) improved over the observation period. PD severity and dyskinesias tended to improve and increase, respectively. Apomorphine doses were stable, but levodopa doses increased by 100 mg/day. Patient-reported apomorphine efficacy tended to increase and all participants remained on apoPS throughout the observation period; with the main patient-reported reason being improved nodules. These observations suggest that patients with s.c. nodules caused by apoGPF may benefit from switching to apoPS in terms of s.c. nodule occurrence and severity. Alternatively, observed benefits may have been due to the switch itself. As nodule formation is a limiting factor in apomorphine treatment, a controlled prospective study comparing local tolerance with different formulations is warranted.
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| 3. |
- Höglund, Arja, et al.
(författare)
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Associations between fluctuations in daytime sleepiness and motor and non-motor symptoms in Parkinson's disease
- 2021
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Ingår i: Movement Disorders Clinical Practice. - 2330-1619. ; 8:1, s. 44-50
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Background Non-motor fluctuations (NMF) are a major concern in Parkinson's disease (PD), and they have been categorised into neuropsychiatric, autonomic and sensory fluctuations. However, this categorisation does not include sleep and sleep-related features, and the association between daytime sleepiness and other motor and/or non-motor fluctuations in PD remains to be elucidated. Objective To investigate the relationship between daytime sleepiness and other non-motor and motor fluctuations in people with PD. Methods A three-day home diary recording daytime sleepiness, mood, anxiety, and motor symptoms was used along with the Karolinska Sleepiness Scale (KSS) and six days of accelerometer (Parkinson's KinetiGraph?; PKG?) registration to detect motor fluctuations among people with a DaTSCAN verified clinical PD diagnosis (32 men; mean PD duration, 8.2?years). Participants were categorised as motor fluctuators or non-fluctuators according to the UPDRS part IV and/or the presence of motor and non-motor fluctuations. Results Fifty-two people with PD participated. Daytime sleepiness correlated significantly with motor symptoms, mood and anxiety among those classified as motor fluctuators (n = 28). Motor fluctuators showed stronger correlations between the individual mean level of all diary variables (daytime sleepiness, anxiety, mood and motor symptoms) when compared to the non-fluctuators (n = 24). Stronger positive within-individual correlations were found among fluctuators in comparison to non-fluctuators. In general, PKG data did not correlate with diary data. Conclusion Episodes of daytime sleepiness, as reported by home diaries, were associated with other self-reported non-motor and motor fluctuations, but were not supported by PKG data.
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| 4. |
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| 5. |
- Brundin, Patrik, et al.
(författare)
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Bilateral caudate and putamen grafts of embryonic mesencephalic tissue treated with lazaroids in Parkinson's disease
- 2000
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Ingår i: Brain. - 1460-2156. ; 123, s. 1380-1390
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Tidskriftsartikel (refereegranskat)abstract
- Five parkinsonian patients were transplanted bilaterally into the putamen and caudate nucleus with human embryonic mesencephalic tissue from between seven and nine donors. To increase graft survival, the lipid peroxidation inhibitor tirilazad mesylate was administered to the tissue before implantation and intravenously to the patients for 3 days thereafter. During the second postoperative year, the mean daily L-dopa dose was reduced by 54% and the UPDRS (Unified Parkinson's Disease Rating Scale) motor score in 'off' phase was reduced by a mean of 40%. At 10-23 months after grafting, PET showed a mean 61% increase of 6-L-[(18)F]fluorodopa uptake in the putamen, and 24% increase in the caudate nucleus, compared with preoperative values. No obvious differences in the pattern of motor recovery were observed between these and other previously studied cases with putamen grafts alone. The amount of mesencephalic tissue implanted in each putamen and caudate nucleus was 42 and 50% lower, respectively, compared with previously transplanted patients from our centre. Despite this reduction in grafted tissue, the magnitudes of symptomatic relief and graft survival were very similar. These findings suggest that tirilazad mesylate may improve survival of grafted dopamine neurons in patients, which is in agreement with observations in experimental animals.
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| 6. |
- Hedin, G, et al.
(författare)
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Measuring Insomnia Among Adolescents : Analysis of the Minimal Insomnia Symptom Scale (miss) with the Rasch Measurement Model
- 2022
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Ingår i: Sleep Medicine. - : Elsevier BV. - 1389-9457.
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Konferensbidrag (refereegranskat)abstract
- Introduction : The Minimal Insomnia Symptom Scale (MISS) is a three-item screening instrument that has been found to be psychometrically sound and capable of screening for insomnia among adults and older people. This study aimed to test the measurement properties of the MISS together with an additional item focusing on daytime functioning among adolescents using the Rasch measurement model. Materials and Methods : A cross-sectional design were used, and data from adolescents (age 13-17 years, n=3022) was analyzed using the Rasch measurement model. Results : The MISS had good measurement properties. When replacing the original MISS item “not rested by sleep” with the item “daytime disturbance”, the measurement properties slightly improved. We label this new scale the MISS-Revised (MISS-R). The reliability was significantly better for the MISS-R (0.55) compared to the MISS (0.50). The optimal cut-off was found to be >6 points, both for the MISS and the MISS-R. Conclusions : This study provides general support that both the MISS as well as the MISS-R have good fit to the Rasch model. At this stage, neither the MISS nor the MISS-R can be advocated over the other for use among adolescents, although the MISS-R had slightly better reliability than the MISS. Additional studies are needed to determine the clinically optimal cut-off score for identification of insomnia.
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| 7. |
- Kim, M.-Y., et al.
(författare)
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Respondent burden and patient-perceived validity of the PDQ-39
- 2006
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Ingår i: Acta Neurologica Scandinavica. - : Wiley-Blackwell. - 0001-6314 .- 1600-0404. ; 113:2, s. 132-137
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To evaluate the respondent burden and patient-perceived content validity of the Parkinson's disease (PD)-specific health status questionnaire PDQ-39, and the linguistic validity of its revised Swedish version.MATERIALS AND METHODS: Eighteen PD patients completed the revised Swedish version of the PDQ-39. Respondent burden was assessed by recording the time taken to complete the questionnaire. Content and linguistic validity was evaluated qualitatively.RESULTS: Patients with mild, moderate and advanced PD needed a mean time of 9.5, 11.3 and 20.1 min, respectively, to complete the PDQ-39. One-third of the patients identified irrelevant items and 50% identified important health-related areas that were missing. Revisions had eliminated previous linguistic problems with the Swedish PDQ-39.CONCLUSIONS: Undue respondent burden challenged the appropriateness of the PDQ-39 among patients with more advanced disease. Overall content validity was acceptable but compromised by lack of important content areas. Observations supported the linguistic validity of the revised Swedish PDQ-39.
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| 8. |
- Newby, H, et al.
(författare)
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A Scoping Review of Adolescent Health Indicators
- 2021
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Ingår i: The Journal of adolescent health : official publication of the Society for Adolescent Medicine. - : Elsevier BV. - 1879-1972. ; 69:3, s. 365-374
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Tidskriftsartikel (refereegranskat)
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| 9. |
- Bolejko, A., et al.
(författare)
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Effects of an information booklet on patient anxiety and satisfaction with information in magnetic resonance imaging : A randomized, single-blind, placebo-controlled trial
- 2021
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Ingår i: Radiography. - : Elsevier BV. - 1078-8174 .- 1532-2831. ; 27:1, s. 162-167
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Magnetic resonance imaging (MRI) is an important modality in diagnostics and treatment follow-up. However, MRI can be perceived as unpleasant even though the examination is non-invasive. Patients' knowledge of the MRI procedure is usually scarce, which may enhance patient anxiety at examination. We investigated the effects on anxiety and satisfaction with an information booklet on MRI compared to a placebo booklet delivered to adult patients prior to their first MRI examination. Methods: This randomized, single-blind, placebo-controlled trial included 197 patients. The intervention group (n = 95) received a booklet about MRI prior to the examination, whereas the control group (n = 102) received a placebo booklet of the same size and layout but containing general information. The State Trait Anxiety Inventory with supplementary questions from the Quality from the Patient's Perspective questionnaire were used as patient-reported outcome measures. Results: Anxiety did not differ between the groups, either prior to MRI or during the examination, but those who received the placebo booklet were at higher risk of experiencing high anxiety prior to the MRI examination (odds ratio 2.64; P = 0.029). The intervention group was more satisfied with the information received (P = 0.044), and a majority of participants in both groups (≥87%) considered it important to obtain information on the MRI procedure. Conclusion: Written MRI information decreases the risk of high anxiety levels before MRI and improves patient satisfaction with the information. Further research is needed to investigate whether written information prior to MRI is beneficial not only from the perspective of the patient but may also be cost-effective. Implications for practice: Written MRI information prior to the examination is recommended in radiography care.
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| 10. |
- de Roos, Paul, et al.
(författare)
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A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement
- 2017
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Ingår i: Journal of Parkinson's Disease. - : IOS Press. - 1877-7171 .- 1877-718X. ; 7:3, s. 533-543
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative condition that is expected to double in prevalence due to demographic shifts. Value-based healthcare is a proposed strategy to improve outcomes and decrease costs. To move towards an actual value-based health care system, condition-specific outcomes that are meaningful to patients are essential.OBJECTIVE: Propose a global consensus standard set of outcome measures for PD.METHODS: Established methods for outcome measure development were applied, as outlined and used previously by the International Consortium for Health Outcomes Measurement (ICHOM). An international group, representing both patients and experts from the fields of neurology, psychiatry, nursing, and existing outcome measurement efforts, was convened. The group participated in six teleconferences over a six-month period, reviewed existing data and practices, and ultimately proposed a standard set of measures by which patients should be tracked, and how often data should be collected.RESULTS: The standard set applies to all cases of idiopathic PD, and includes assessments of motor and non-motor symptoms, ability to work, PD-related health status, and hospital admissions. Baseline demographic and clinical variables are included to enable case mix adjustment.CONCLUSIONS: The Standard Set is now ready for use and pilot testing in the clinical setting. Ultimately, we believe that using the set of outcomes proposed here will allow clinicians and scientists across the world to document, report, and compare PD-related outcomes in a standardized fashion. Such international benchmarks will improve our understanding of the disease course and allow for identification of 'best practices', ultimately leading to better informed treatment decisions.
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| 11. |
- Hagell, Peter, et al.
(författare)
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Health-related quality of life following bilateral intrastriatal transplantation in Parkinson's disease
- 2000
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Ingår i: Movement Disorders. - 0885-3185. ; 15:2, s. 224-229
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Tidskriftsartikel (refereegranskat)abstract
- Intrastriatal transplantation of embryonic dopaminergic tissue is a new, experimental approach for the treatment of Parkinson's disease (PD). Clinical trials have shown longterm graft survival and therapeutically valuable improvements with decreased L-dopa dose and time spent in the "off"-phase, and reduced rigidity and hypokinesia. We have measured health-related quality of life (HRQoL) using the Nottingham Health Profile (NHP) in five patients subjected to bilateral transplantation in the caudate and putamen to explore the influence of intrastriatal grafts on HRQoL and the value of such measures in trials of restorative therapies. The results demonstrate improved HRQoL following transplantation, with individual patients showing striking improvements within different dimensions of the NHP as well as the NHP distress index (NHPD). The most pronounced improvements after grafting were observed for physical mobility along with emotional reactions and energy. These results indicate that intrastriatal transplantation of embryonic dopaminergic tissue can give rise to improvements within most areas of HRQoL, and that HRQoL measurements provide important information additional to that obtained by traditional, symptom-oriented assessment protocols. However, the optimal approach to HRQoL measurement in PD remains to be determined.
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| 12. |
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| 13. |
- Hagell, Peter, et al.
(författare)
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Sequential bilateral transplantation in Parkinson's disease: effects of the second graft
- 1999
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Ingår i: Brain. - : Oxford University Press (OUP). - 1460-2156. ; 122:6, s. 1121-1132
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Tidskriftsartikel (refereegranskat)abstract
- Five parkinsonian patients who had received implants of human embryonic mesencephalic tissue unilaterally in the striatum 10-56 months earlier were grafted with tissue from four to eight donors into the putamen (four patients) or the putamen plus the caudate nucleus (one patient) on the other side, and were followed for 18-24 months. After 12-18 months, PET showed a mean 85% increase in 6-L-[18F]fluorodopa uptake in the putamen with the second graft, whereas there was no significant further change in the previously transplanted putamen. Two patients exhibited marked additional improvements after their second graft: 'on-off' fluctuations virtually disappeared, movement speed increased, and L-dopa could be withdrawn in one patient and reduced by 70% in the other. The improvement in one patient was moderate. Two patients with atypical features, who responded poorly to the first graft, worsened following the second transplantation. These findings indicate that sequential transplantation in patients does not compromise the survival and function of either the first or the second graft. Moreover, putamen grafts that restore fluorodopa uptake to normal levels can give improvements of major therapeutic value.
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| 14. |
- Hagell, Peter, et al.
(författare)
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Testing the SF-36 in Parkinson's disease. Implications for reporting rating scale data
- 2008
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Ingår i: Journal of Neurology. - 0340-5354 .- 1432-1459. ; 255:2, s. 246-254
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Tidskriftsartikel (refereegranskat)abstract
- Rating scales are increasingly the primary outcome measures in clinical trials. However, clinically meaningful interpretation of such outcomes requires that the scales used satisfy basic requirements (scaling assumptions) within the data. These are rarely tested. The SF-36 is the most widely used patient-reported rating scale. Its scaling assumptions have been challenged in neurological disorders but remain untested in Parkinson's disease (PD). We therefore tested these by analyzing SF-36 data from 202 PD patients (54% men; mean age 70) to determine if it was legitimate to report scores for the eight SF-36 scales and its two summary measures of physical and mental health, and if those scores were reliable and valid. Results supported generation of the eight SF-36 scale scores and their reliabilities were generally good (> or = 0.74 in all but one instance). However, we found limitations that question the meaningfulness of four scales and other limitations that restrict the ability of four scales to detect change in clinical trials (floor/ceiling effects, 19.6-46.2 %). The two SF-36 summary measures were not found to be valid indicators of physical and mental health. This study demonstrates important limitations of the SF-36 and provides the first evidence-based guidelines for its use in PD. The limitations of the SF-36 demonstrated here may explain some unexpected findings in previous studies. However, the main implication is a general one for the clinical research community regarding requirements for reporting rating scale endpoints. Specifically, investigators should routinely provide scale evaluations based on data from within major clinical trials.
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| 15. |
- Hedin, G., et al.
(författare)
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Measuring insomnia among adolescents : Analysis of the Minimal Insomnia Symptom Scale (MISS) with the Rasch measurement model
- 2022
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Ingår i: Sleep Medicine. - : Elsevier. - 1389-9457 .- 1878-5506. ; 100:Suppl. 1, s. S130-S131
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The Minimal Insomnia Symptom Scale (MISS) is a three-item screening instrument that has been found to be psychometrically sound and capable of screening for insomnia among adults and older people. This study aimed to test the measurement properties of the MISS together with an additional item focusing on daytime functioning among adolescents using the Rasch measurement model.
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| 16. |
- Hellström, Amanda, et al.
(författare)
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A classical test theory evaluation of the Sleep Condition Indicator accounting for the ordinal nature of item response data
- 2019
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 14:3, s. 1-13
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Tidskriftsartikel (refereegranskat)abstract
- Background Insomnia symptoms are common among young adults and affect about 5% to 26% of 19 to 34-year-olds. In addition, insomnia is associated with poor mental health and may affect daily performance. In research, as well as in clinical practice, sleep questionnaires are used to screen for and diagnose insomnia. However, most questionnaires are not developed according to current DSM-5 diagnostic criteria. An exception is the recently developed Sleep Condition Indicator (SCI), an eight-item scale screening for insomnia. Aim The aim of this study was to perform a Classical Test Theory (CTT) based psychometric evaluation of the SCI in a sample of Swedish university students, by taking the ordinal nature of item level data into account. Methods The SCI was translated into Swedish and distributed online to undergraduate students at three Swedish universities, within programs of health, psychology, science or economy. Of 3673 invited students, 634 (mean age 26.9 years; SD = 7.4) completed the questionnaire that, in addition to the SCI, comprised other scales on sleep, stress, lifestyle and students' study environment. Data were analyzed according to CTT investigating data completeness, item homogeneity and unidimensionality. Results Polychoric based explorative factor analysis suggested unidimensionality of the SCI, and internal consistency was good (Cronbach's alpha, 0.91; ordinal alpha, 0.94). SCI scores correlated with the Insomnia Severity Index (-0.88) as well as with sleep quality (-0.85) and perceived stress (-0.50), supporting external construct validity. Conclusions These observations support the integrity of the of the SCI. The SCI demonstrates sound CTT-based psychometric properties, supporting its use as an insomnia screening tool.
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| 17. |
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| 18. |
- Hoglund, A., et al.
(författare)
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Is excessive daytime sleepiness a separate manifestation in Parkinson's disease?
- 2015
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 132:2, s. 97-104
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundExcessive daytime sleepiness (EDS) is common in Parkinson's disease (PD), but its role and relation to other PD features is less well understood. ObjectiveTo investigate potential predictors of EDS in PD and to explore how EDS relates to other motor and non-motor PD features. Methods118 consecutive persons with PD (54% men; mean age, 64) were assessed regarding EDS using the Epworth Sleepiness Scale (ESS) and a range of motor and non-motor symptoms. Variables significantly associated with ESS scores in bivariate analyses were used in multiple regression analyses with ESS scores as the dependent variable. Principal component analysis (PCA) was conducted to explore the interrelationships between ESS scores and other motor and non-motor PD aspects. ResultsAmong 114 persons with complete ESS data, significant independent associations were found between ESS scores and axial/postural/gait impairment, depressive symptoms, and pain (R-2, 0.199). ESS scores did not load significantly together with any other PD features in the PCA. ConclusionsOnly a limited proportion of the variation in EDS could be accounted for by other symptoms, and EDS did not cluster together with any other PD features in PCAs. This suggests that EDS is a separate manifestation differing from, for example, poor sleep quality and fatigue.
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| 19. |
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| 20. |
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| 21. |
- Kim, M-Y, et al.
(författare)
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Respondent burden and patient-perceived validity of the PDQ-39.
- 2006
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 1600-0404 .- 0001-6314. ; 113:2, s. 132-137
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Tidskriftsartikel (refereegranskat)abstract
- Evaluation of various methods in clinical practice is often based on interpretations by two or more observers. Such data need to be analysed with correct statistics, or the results and conclusions may be misleading. In this study, the use of measures of agreement for ordinal data in five international nursing journals is reviewed and various methods for measuring agreement are presented and discussed. Analyses of agreement did not seem to be very common in nursing research, but a great variation was found regarding the choice of method for analysing agreement. Both acceptable and unacceptable methods were found in the articles reviewed. When choosing among various methods for agreement the weighted κ-coefficient is probably the most useful for ordinal data, but several issues of concern arise and need to be taken into consideration when using these types of analyses.
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| 22. |
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| 23. |
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| 24. |
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| 25. |
- Swaine-Verdier, A, et al.
(författare)
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Adapting quality of life instruments
- 2004
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Ingår i: Value in Health. - : Elsevier BV. - 1098-3015. ; 7:s1, s. 27-30
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Tidskriftsartikel (refereegranskat)abstract
- Due to the international nature of many clinical studies and trials it is often necessary to produce several language versions of specific measures. While it is generally acknowledged that it is necessary to produce versions that are conceptually equivalent, the best method of achieving this is more controversial. It is commonly stated that there is a gold-standard method, which involves forward and backward translation. However, no evidence has been presented to support this view. This paper argues that the "gold-standard" method is difficult to support and describes an alternative method involving dual translation panels that has been used in the production of all adaptations of needs-based quality of life instruments.
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| 26. |
- Tennant, A, et al.
(författare)
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Application of Rasch analysis in the development and application of quality of life instruments
- 2004
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Ingår i: Value in Health. - : Elsevier BV. - 1098-3015. ; 7:Suppl. 1, s. 22-26
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Tidskriftsartikel (refereegranskat)abstract
- This paper discusses recent advances that have been made in the field of psychometrics, specifically, the application of Rasch analysis to the instrument development process. It emphasizes the importance of assessing the fundamental scaling properties of an instrument prior to consideration of traditional psychometric indicators. The paper introduces Rasch analysis and shows how it has been applied in the development of needs-based measures in order to ensure that they provide unidimensional measurement. By ensuring that scales are based on the same measurement model and that they fit the Rasch model it is possible for QoL scores to be compared across diseases by means of cocalibration and item banking.
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| 27. |
- Westergren, A., et al.
(författare)
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Malnutrition and risk of falling among elderly without home-help service - A cross sectional study
- 2014
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Ingår i: Journal of Nutrition, Health & Aging. - : Springer Science and Business Media LLC. - 1279-7707 .- 1760-4788. ; 18:10, s. 905-911
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: The aim of this study was to explore the frequency of malnutrition risk and associated risk of falling, social and mental factors among elderly without home-help service. The aim was also to explore factors associated with risk of falling. A cross-sectional design was used. Elderly persons own homes. Data were collected during preventive home visits to 565 elderly (age range 73-90 years) without home-help service. Those with complete SCREEN II forms were included in the study (n=465). Measurements included rating scales regarding malnutrition risk (SCREEN II) and risk of falling (Downton). In addition, single-items: general health, satisfaction with life, tiredness, low-spiritedness, worries/anxiety and sleeping were used. According to the SCREEN II, 35% of the sample had no malnutrition risk, 35% had moderate risk and 30% had high malnutrition risk. In an ordinal regression analysis, increased malnutrition risk was associated with being a woman living alone (OR 4.63), male living alone (OR 6.23), lower age (OR 0.86), poorer general health (OR 2.03-5.01), often/always feeling tired (OR 2.38), and an increased risk of falling (OR 1.21). In a linear regression analysis, risk of falling was associated with higher age (B 0.020), not shopping independently (B 0.162), and low meat consumption (B 0.138). There are complex associations between malnutrition risk and the gender-cohabitation interaction, age, general health, tiredness, and risk of falling. In clinical practice comprehensive assessments to identify those at risk of malnutrition including associated factors are needed. These have to be followed by individual nutritional interventions using a holistic perspective which may also contribute to reducing the risk of falling.
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