| 1. |
- Henriksson (Alvariza), Anette, et al.
(författare)
-
Use of the Preparedness for Caregiving Scale in Palliative Care : A Rasch Evaluation Study
- 2015
-
Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 50:4, s. 533-541
-
Tidskriftsartikel (refereegranskat)abstract
- Context. Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care. Objectives. The aim of this study was to evaluate the measurement properties of the original English version and a Swedish version of the Preparedness for Caregiving Scale (PCS). Methods. The sample (n = 674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected, and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model. Results. Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex was detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index. Conclusion. The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions. (C) 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
|
|
| 2. |
- af Sandeberg, Margareta, et al.
(författare)
-
Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer
- 2010
-
Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
-
Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer. Methods: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity. Results: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden. Conclusions: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.
|
|
| 3. |
- Hagell, Peter, et al.
(författare)
-
A Swedish version of the 16-item Parkinson Fatigue Scale (PFS-16)
- 2012
-
Ingår i: Acta Neurologica Scandinavica. - : Wiley-Blackwell Publishing Ltd. - 0001-6314 .- 1600-0404. ; 125:4, s. 288-292
-
Tidskriftsartikel (refereegranskat)abstract
- Background – The PFS-16 is a 16-item fatigue scale for Parkinson’s disease (PD) developed in the UK. However, documented translations and psychometric evaluations are sparse. Aim – To translate the PFS-16 into Swedish and conduct initial testing of its psychometric properties. Methods – Following translation, the PFS-16 was administered twice (2 weeks apart) to 30 people with PD (18 men; mean age/PD duration, 60/6.4 years). The PFS-16 uses five response categories (1 = strongly disagree, 5 = strongly agree), and the total score is the mean over item scores (1–5; 5 = more fatigue). An alternative, dichotomised scoring method has also been suggested (total score, 0–16; 16 = more fatigue). Scaling assumptions, floor/ceiling effects, reliability, and correlations with other variables including the generic fatigue scale Functional Assessment of Chronic Illness Therapy – Fatigue scale (FACIT-F) were tested. Results – Scaling assumptions were generally supported for the original scoring [range of mean (SD) item scores, 2.1–3.3 (1–1.4); corrected item-total correlations, ≥0.40], but not for dichotomised scoring [range of mean (SD) item scores, 0.1–0.6 (0.3–0.5); corrected item-total correlations, ≥0.16]. Reliabilities were ≥0.88. Floor effects were absent (original scoring) and >23% (dichotomised scoring); there were no ceiling effects. Correlations with other variables followed expectations (e.g. −0.88 with FACIT-F scores). Conclusions – These observations support the psychometric properties of the Swedish PFS-16, but cautions against dichotomised scoring.
|
|
| 4. |
- Hagell, Peter, et al.
(författare)
-
Apomorphine formulation may influence subcutaneous complications from continuous subcutaneous apomorphine infusion in Parkinson's disease
- 2020
-
Ingår i: Journal of Neurology. - : D. Steinkopff-Verlag. - 0340-5354 .- 1432-1459. ; 267:11, s. 3411-3417
-
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.
|
|
| 5. |
- Hoglund, Arja, et al.
(författare)
-
Associations Between Fluctuations in Daytime Sleepiness and Motor and Non-Motor Symptoms in Parkinson's Disease
- 2021
-
Ingår i: Movement Disorders Clinical Practice. - : John Wiley & Sons. - 2330-1619. ; 8:1, s. 44-50
-
Tidskriftsartikel (refereegranskat)abstract
- Background Non-motor fluctuations are a major concern in Parkinson's disease (PD), and they have been categorized into neuropsychiatric, autonomic and sensory fluctuations. However, this categorization 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 6 days of accelerometer (Parkinson's KinetiGraph (TM); PKG (TM)) registration to detect motor fluctuations among people with a DaTSCAN verified clinical PD diagnosis (32 men; mean PD duration, 8.2 years). Participants were categorized 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.
|
|
| 6. |
- Höglund, Arja, et al.
(författare)
-
A 10-year follow-up of excessive daytime sleepiness in Parkinson's disease
- 2019
-
Ingår i: Parkinson's Disease. - : Hindawi Limited. - 2090-8083 .- 2042-0080. ; 2019
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction. The aim of this prospective study was to investigate excessive daytime sleepiness (EDS) over time and in relation to other PD symptoms among people with Parkinson's disease (PD). Methods. Thirty participants younger than 65 years with PD were randomly selected. At inclusion, mean (SD) disease duration was 6.2 (4.8) years and median (min-max) severity of PD was classified as stage II (stages I-III) according to Hoehn and Yahr. Participants were followed annually for 10 years with clinical assessments of their PD status, medications, comorbidities, and a standardized interview about their sleep habits and occurrence of daytime sleepiness. EDS was assessed by the self-reported Epworth Sleepiness Scale (ESS). Seventeen participants completed the 10-year longitudinal follow-up. Results. Fifteen of 30 persons were classified to suffer from EDS (ESS > 10) at baseline. At the group level, EDS remained stable over 10 years and did not deteriorate in parallel with worsening of motor symptoms. Furthermore,EDS was associated with sleep quality, fatigue, anxiety, depression, and axial/postural/gait impairments. Conclusions. EDS did not worsen over 10 years, although other PD aspects did. EDS in PD seems to be a complex nonmotor symptom that is unrelated to deterioration of motor symptoms in PD.
|
|
| 7. |
- Höglund, Arja, et al.
(författare)
-
Like a Wave in Its Variable Shape, Breadth, and Depth : A Qualitative Interview Study of Experiences of Daytime Sleepiness in People with Parkinson's Disease
- 2022
-
Ingår i: Parkinson's Disease. - : Hindawi Limited. - 2090-8083 .- 2042-0080. ; 2022, s. 1-9
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Daytime sleepiness is a common nonmotor symptom in Parkinson's disease (PD) which is associated with decreased quality of life and perceived health. However, experiences of daytime sleepiness in people with PD have not been explored. The aim of this qualitative study was to explore experiences of daytime sleepiness in people with PD. Materials and Methods: Five women and seven men (42-82 years) with PD for 1.5 to 21 years and excessive daytime sleepiness (i.e., a score of >10 on the Epworth Sleepiness Scale) participated in the study. Data were collected through individual, semistructured, face-to-face interviews and analyzed with qualitative content analysis. Results: Three themes of the experience of daytime sleepiness were revealed: (1) not an isolated phenomenon, (2) something to struggle against or accept, and (3) something beyond sleepiness. Conclusion: Daytime sleepiness is a complex nonmotor symptom in PD which manifests itself in several ways. Some experiences are similar, for instance, the attribution of daytime sleepiness to PD and its medical treatment. Differences depend on how sleepiness manifests itself, affects the person, and impacts daily life, as well as whether it causes feelings of embarrassment. Some participants needed to struggle against daytime sleepiness most of the time, and others had found a way to handle it, for example, with physical activity. However, sleepiness may also be used to benefit the person, for example, if they allow themselves to take a power nap to regain energy. The health care professionals can easily underestimate or misinterpret the prevalence and burden of daytime sleepiness because people with PD may describe daytime sleepiness as tiredness, drowsiness, or feeling exhausted, not as sleepiness.
|
|
| 8. |
- Lindholm, Beata, et al.
(författare)
-
Clinical usefulness of retropulsion tests in persons with mild to moderate parkinson’s disease
- 2021
-
Ingår i: International Journal of Environmental Research and Public Health. - : MDPI Multidisciplinary Digital Publishing Institute. - 1661-7827 .- 1660-4601. ; 18:23, s. 1-10
-
Tidskriftsartikel (refereegranskat)abstract
- People with Parkinson’s disease (PwPD) have an increased risk for falls and near falls. They have particular difficulties with maintaining balance against an external perturbation, and several retropulsion tests exist. The Unified PD Rating Scale item 30 (UPDRS30) is the most common, involving an expected shoulder pull. Others recommend using an unexpected shoulder pull, e.g., the Nutt Retropulsion Test (NRT). We aimed to evaluate the clinical usefulness of these tests for detecting future fallers. By using two different golden standards related to self-reported prospective falls and near falls over 6 months following two different time points with 3.5 years between, we estimated sensitivity/specificity, Youden index, predictive values, and likelihood ratios for each test. The different time points yielded a different prevalence of falls and near falls, as well as different predictive values. When comparing the performance of the NRT and UPDRS30 for detecting future fallers, we found that the NRT consistentlyperformed better than UPDRS30. However, neither test exhibited optimal performance in terms of predictive values and associated likelihood ratios. Our findings speak against using either of these tests as a single assessment for this purpose and support previous recommendations of using a multifactorial approach when targeting balance problems in PwPD.
|
|
| 9. |
- Lindqvist, Daniel, et al.
(författare)
-
Interleukin-6 Is Elevated in the Cerebrospinal Fluid of Suicide Attempters and Related to Symptom Severity
- 2009
-
Ingår i: BIOLOGICAL PSYCHIATRY. - : Elsevier BV. - 0006-3223 .- 1873-2402. ; 66:3, s. 287-292
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Depressive disorders are associated with immune system alterations that can be detected in the blood. Cytokine concentrations in cerebrospinal fluid (CSF) and their relationship to aspects of suicidality have previously not been investigated. Methods: We measured interleukin-1 beta interleukin-6 (IL-6), interleukin-8, and tumor necrosis factor-a (TNF-alpha) in CSF and plasma of suicide attempters (n = 63) and healthy control subjects (n = 47). Patients were classified according to diagnosis and violent or nonviolent suicide attempt. We evaluated suicidal ideation and depressive symptoms using the Suicide Assessment Scale and the Montgomery-Asberg Depression Rating Scale (MADRS). We also analyzed the relation between cytokines and monoamine metabolites 5-hydroxyindoleacetic acid (5-HIAA), homovanillic acid (HVA), and 3-methoxy-4-hydroxyphenylglycol (MHPG) in CSF, as well as the integrity of the blood-brain barrier as reflected by the CSF:serum albumin ratio. Results: IL-6 in CSF was significantly higher in suicide attempters than in healthy control subjects. Patients who performed violent suicide attempts displayed the highest IL-6. Furthermore, there was a significant positive correlation between MANS scores and CSF IL-6 levels in all patients. IL-6 and TNF-a correlated significantly with 5-HIAA and HVA in CSF, but not with MHPG. Cytokine levels in plasma and CSF were not associated, and patients with increased blood-brain barrier permeability did not exhibit elevated cytokine levels. Conclusions: We propose a role for CSF IL-6 in the symptomatology of suicidal behavior, possibly through mechanisms involving alterations of dopamine and serotonin metabolism.
|
|
