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  • Henriksson, 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. - 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.
  • Hoglund, A., et al. (författare)
  • Is excessive daytime sleepiness a separate manifestation in Parkinson's disease?
  • 2015
  • Ingår i: Acta Neurologica Scandinavica. - 0001-6314 .- 1600-0404. ; 132:2, s. 97-104
  • 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.
  • Timpka, Jonathan, et al. (författare)
  • Workforce unavailability in Parkinson's disease
  • 2017
  • Ingår i: Acta Neurologica Scandinavica. - : Wiley-Blackwell. - 0001-6314 .- 1600-0404. ; 135:3, s. 332-338
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: Individuals with Parkinson's disease (PD) become unavailable in the workforce earlier than comparable members of the general population. This may result in significant social insurance expenses, but as workforce participation can be a source for social interaction and a vital part of the personal identity, there are likely to be personal implications extending far beyond the economic aspects. This study aimed to identify aspects that may contribute to workforce unavailability in people with PD. Materials & methods: This was a cross-sectional registry study using data from the Swedish national quality registry for PD and included persons with PD in Skåne County, Sweden who were younger than 65 years. Variables were selected from the registry based on earlier studies and clinical experience and were tested for association with unavailability in the workforce: first in a series of simple regression analyses and then in a multiple logistic regression analysis. Results: A total of 99 persons with PD-of whom 59 were available and 40 were unavailable in the workforce-were included in the study. Age (OR per year: 1.47, 95% CI: 1.18-1.85; P <0.01) and anxiety (OR: 6.81, 95% CI: 1.20-38.67; P = 0.03) were significant contributing factors for unavailability in the workforce. Conclusions: Based on the findings in this exploratory study, anxiety-a potentially modifiable factor-and age may be contributing factors for workforce unavailability in PD. However, prospective studies are warranted to confirm the findings and the causation of the association between anxiety and workforce unavailability needs to be clarified.
  • 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. - : BioMed Central (BMC). - 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.
  • Bala, V., et al. (författare)
  • Towards measurement of person-centered care outcomes in outpatient nurse-led clinics
  • 2017
  • Ingår i: Annals of the Rheumatic Diseases. - : BMJ Publishing Group Ltd. - 0003-4967 .- 1468-2060. ; 76:Suppl. 2, s. 1520-1520
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Person-centered care (PCC) is increasingly emphasized as a key component of effective illness management and of developing high quality of care. Despite considerable progress of PCC in many areas of care there is currently a gap and a need for means to assess PCC practice in outpatient care. In rheumatology, PCC is considered an unmet need and further development and evaluation of this approach to care is thus of high priority.Objectives To develop an instrument for measuring person-centered care from the perspective of the person with rheumatoid arthritis (RA) in nurse-led outpatient clinics.Methods A conceptual framework of PCC in the outpatient context and focusing on the meeting between the person with RA and the nurse and on the patient as an active care partner was undertaken. Based on this framework, qualitative interviews (1,2) and a literature review, a 35-item questionnaire was proposed and qualitatively tested regarding acceptability and content validity among 50 persons with RA attending a nurse-led outpatient clinic. Two versions of the questionnaire were tested: one using four response categories (0 = Totally disagree; 3 = Completely agree), and one using two response categories (0 = Disagree; 1 = Agree). Content validity was estimated by calculating Content Validity Index of the individual items (I-CVI) and of the overall instrument (S-CVI).Results Respondents found the items easy to understand (77%) and relevant (93%). Seventy-three percent of the respondents preferred the questionnaire version with four response categories. This version took a mean (SD) of 5.3 (2.5) minutes to complete. I-CVI values ranged from 0.87 to 1.00 and S-CVI was 0.94. About 80% of the respondents considered some items to be redundant. This resulted in a reduced 24-item draft questionnaire that yield a total score between 0–72.Conclusions A preliminary 24-item patient-reported PCC questionnaire was developed. Psychometric testing is needed for validation of this tool before implementation.
  • Bolejko, A., et al. (författare)
  • Effects of an information booklet on patient anxiety and satisfaction with information in magnetic resonance imaging : A randomized, single-blind, placebo-controlled trial
  • Ingår i: Radiography. - : W.B. Saunders Ltd. - 1078-8174 .- 1532-2831. ; 27:1, s. 162-167
  • 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.
  • 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. - 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.
  • 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. - 0340-5354 .- 1432-1459.
  • 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.
  • Hellstrom, A., et al. (författare)
  • Initial psychometric testing of the sleep condition indicator in a Swedish context
  • 2017
  • Ingår i: Sleep Medicine. - : Elsevier. - 1389-9457 .- 1878-5506. ; 40:Suppl. 1, s. E129-E130
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction: There are several rating scales for insomnia; however, diagnostic criteria have changed over time. This means that the usefulness and validity of earlier scales may be compromised. The Sleep Condition Indicator (SCI) is a recently designed scale, developed in the UK, based on the DSM-V criteria of insomnia. The aim of this study was to translate and psychometrically evaluate the SCI in a Swedish context, focusing on its dimensionality.Materials and methods: The SCI consists of eight items with 5 ordered response categories (scored between 0 and 4). A total score between 0 and 32 is calculated; higher score indicates better sleep. The SCI was distributed through a web-questionnaire to university students and 634 completed the questionnaire . First we replicated the methodology used in the original testing of the UK SCI using principal component analysis (PCA) as the extraction method with varimax rotation and Kaisers eigenvalue >1 criterion for determination of the number of factors. We then continued with a more appropriate method for ordinal data, an exploratory factor analysis (EFA), using an unweighted least squares (ULS) extraction method based on a polychoric correlation matrix. Parallel analysis was conducted to determine the number of factors. Internal consistency was estimated using an ordinal version of Cronbach's alpha.Results: The PCA suggested a one factor model, with eigenvalues of 5.0 for the 1st and 0.9 for the 2nd factor, explaining 62% of the variance. Loadings varied between 0.62-0.86. With the EFA (ULS), 70% of the variance was explained by the first factor. Factor loadings varied between 0.66 and 0.92. Eigenvalues for factors 1 and 2 were 5.6 and 0.8, respectively. Corresponding 95th percentile eigenvalues from the parallel analysis were 5.3 (1st factor) and 0.4 (2nd factor). Reliability (ordinal alpha) of the total SCI score was 0.94.Conclusions: Both models support a unidimensional SCI structure in our sample of university students. This is a prerequisite for the calculation and validity of a total SCI score. In addition, the total score exhibited good reliability. These observations support the psychometric integrity of the Swedish SCI and provide a starting point for further testing.
  • 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 LTD. - 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.
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