SwePub
Sök i SwePub databas

  Utökad sökning

Träfflista för sökning "WFRF:(Hagell Peter) "

Sökning: WFRF:(Hagell Peter)

  • Resultat 1-50 av 419
Sortera/gruppera träfflistan
   
NumreringReferensOmslagsbildHitta
1.
  •  
2.
  • 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.
  •  
3.
  • 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. ; 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.
  •  
4.
  • Hammarlund, Catharina Sjödahl, et al. (författare)
  • Facing and dealing with emotional turbulence : Living with newly diagnosed Parkinson's disease
  • 2024
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell Publishing Ltd. - 0283-9318 .- 1471-6712.
  • Tidskriftsartikel (refereegranskat)abstract
    • INTRODUCTION : The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. AIM : This study aimed to gain a better understanding of the impact of living with the early stages of PD. METHODS : A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min-max, 64-77) years and had been diagnosed with PD for a median of 5 (min-max, 2-12) months. Interviews were recorded and analysed using systematic text condensation. RESULTS : The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2-3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries).CONCLUSION : Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants' emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.
  •  
5.
  • 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.
  •  
6.
  • Höglund, 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. - 2330-1619. ; 8:1, s. 44-50
  • 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.
  •  
7.
  • 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.
  •  
8.
  •  
9.
  • Aregger Lundh, Stefan, et al. (författare)
  • Life satisfaction in cardiac arrest survivors : A nationwide Swedish registry study
  • 2023
  • Ingår i: Resuscitation Plus. - : Elsevier. - 2666-5204. ; 15
  • Tidskriftsartikel (refereegranskat)abstract
    • IntroductionMost cardiac arrest (CA) survivors report good health and quality of life. Life satisfaction on the other hand has not yet been studied in a large scale in the CA population. We aimed to explore life satisfaction as perceived by CA survivors with three research questions addressed: (1) how do CA survivors report their life satisfaction, (2) how are different domains of life satisfaction associated with overall life satisfaction, and (3) how are demographic and medical factors associated with overall life satisfaction?MethodsThis registry study had a cross-sectional design. Life satisfaction was assessed using the 11-item Life Satisfaction checklist (LiSat-11). The sample included 1435 survivors ≥18 years of age. Descriptive statistics and binary logistic regression analyses were used.ResultsSurvivors were most satisfied with partner relation (85.6%), family life (82.2%), and self-care (77.8%), while 60.5% were satisfied with overall life. Satisfaction with psychological health was strongest associated with overall life satisfaction. Among medical and demographic factors, female sex and poor cerebral performance were associated with less overall life satisfaction.ConclusionsGenerally, CA survivors seem to perceive similar levels of overall life satisfaction as general populations, while survivors tend to be significantly less satisfied with their sexual life. Satisfaction with psychological health is of special interest to identify and treat. Additionally, female survivors and survivors with poor neurological outcome are at risk for poorer overall life satisfaction and need special attention by healthcare professionals.
  •  
10.
  •  
11.
  • Bala, Sidona Valentina, et al. (författare)
  • Living with persistent rheumatoid arthritis : A BARFOT study
  • 2017
  • Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 26:17-18, s. 2646-2656
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim and objective: To describe and understand the meaning of living with persistent rheumatoid arthritis. Background: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis. Design: A descriptive design based on a hermeneutic phenomenological method was used. Methods: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method. Results: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services. Conclusions: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way. Relevance to clinical practice: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.
  •  
12.
  • Bala, Sidona-Valentina, et al. (författare)
  • Measuring person-centered care in nurse-led outpatient rheumatology clinics
  • 2018
  • Ingår i: International Conference on Probabilistic Models for Measurement.
  • Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
    • BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC.AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics.DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software. RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86.SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.
  •  
13.
  • Bala, Sidona-Valentina, et al. (författare)
  • Measuring person-centered care in nurse-led outpatient rheumatology clinics
  • 2018
  • Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
    • BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC. AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software.  RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86. SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.
  •  
14.
  • Bala, Sidona Valentina, et al. (författare)
  • Measuring person-centred care in nurse-led outpatient rheumatology clinics
  • 2018
  • Ingår i: Musculoskeletal Care. - : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 16:2, s. 296-304
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Measurement of person-centred care (PCC) outcomes is underdeveloped owing to the complexity of the concept and lack of conceptual clarity. A framework conceptualizing outpatient PCC in rheumatology nurse-led clinics has therefore been suggested and operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum).Objective: The aim of the present study was to test the extent to which the PCCoc/rheum represents the underpinning conceptual outpatient PCC framework, and to assess its measurement properties as applied in nurse-led outpatient rheumatology clinics.Methods: The 24-item PCCoc/rheum was administered to 343 persons with rheumatoid arthritis from six nurse-led outpatient rheumatology clinics. Its measurement properties were tested by Rasch measurement theory.Results: Ninety-two per cent of individuals (n = 316) answered the PCCoc/rheum. Items successfully operationalized a quantitative continuum from lower to higher degrees of perceived PCC. Model fit was generally good, including lack of differential item functioning (DIF), and the PCCoc/rheum was able to separate individuals with a reliability of 0.88. The four response categories worked as intended, with the exception of one item. Item ordering provided general empirical support of a priori expectations, with the exception of three items that were omitted owing to multidimensionality, dysfunctional response categories and unexpected ordering. The 21-item PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories and no DIF, and its reliability was 0.86.Conclusion: We found general support for the appropriateness of the PCCoc/rheum as an outcome measure of patient-perceived PCC in nurse-led outpatient rheumatology clinics. While in need of further testing, the 21-item PCCoc/rheum has the potential to evaluate outpatient PCC from a patient perspective.
  •  
15.
  • Bala, Sidona Valentina, et al. (författare)
  • Person-centred care in nurse-led outpatient rheumatology clinics : Conceptualization and initial development of a measurement instrument
  • 2018
  • Ingår i: Musculoskeletal Care. - : Wiley. - 1557-0681 .- 1478-2189. ; 16:2, s. 287-295
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Person-centred care (PCC) is considered a key component of effective illness management and high-quality care. However, the PCC concept is underdeveloped in outpatient care. In rheumatology, PCC is considered an unmet need and its further development and evaluation is of high priority. The aim of the present study was to conceptualize and operationalize PCC, in order to develop an instrument for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. Methods: A conceptual outpatient PCC framework was developed, based on the experiences of people with rheumatoid arthritis (RA), person-centredness principles and existing PCC frameworks. The resulting framework was operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum), which was tested for acceptability and content validity among 50 individuals with RA attending a nurse-led outpatient clinic. Results: The conceptual framework focuses on the meeting between the person with RA and the nurse, and comprises five interrelated domains: social environment, personalization, shared decision-making, empowerment and communication. Operationalization of the domains into a pool of items generated a preliminary PCCoc/rheum version, which was completed in a mean (standard deviation) of 5.3 (2.5) min. Respondents found items easy to understand (77%) and relevant (93%). The Content Validity Index of the PCCoc/rheum was 0.94 (item level range, 0.87-1.0). About 80% of respondents considered some items redundant. Based on these results, the PCCoc/rheum was revised into a 24-item questionnaire. Conclusions: A conceptual outpatient PCC framework and a 24-item questionnaire intended to measure PCC in nurse-led outpatient rheumatology clinics were developed. The extent to which the questionnaire represents a measurement instrument remains to be tested.
  •  
16.
  • Bala, Sidona-Valentina, et al. (författare)
  • The experience of care at nurse-led rheumatology clinics
  • 2012
  • Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 10:4, s. 202-211
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective To describe how people with rheumatoid arthritis (RA) experience the care provided by Swedish nurse-led rheumatology outpatient clinics. Methods Eighteen adult people with a diagnosis of RA who had had at least three documented contact sessions with a nurse-led clinic were interviewed. The interviews were analysed with qualitative content analysis. Results Care was expressed in three categories: social environment, professional approach and value-adding measures. A social environment including a warm encounter, a familial atmosphere and pleasant premises was desired and contributed to a positive experience of care. The nurses' professional approach was experienced as empathy, knowledge and skill, as well as support. The care was described as person centred and competent, as it was based on the individual's unique experience of his/her disease and needs. The nurses' specialist knowledge of rheumatology and rheumatology care was highly valued. The offered care represented added value for the participants, instilling security, trust, hope and confidence. It was perceived as facilitating daily life and creating positive emotions. The nurse-led clinics were reported to be easily accessible and provided continuity of the care. These features were presented as fundamental guarantees for health care safety. Conclusion The experiences emphasized the need for a holistic approach to care. In this process, the organization of care and the role and skills of the nurse should be focused on the individual's needs and perspectives. The social environment, professional approach and value-adding measures are particularly relevant for optimal care at nurse-led rheumatology outpatient clinics.
  •  
17.
  • Bala, Sidona-Valentina, et al. (författare)
  • The experience of care at nurse-led rheumatology clinics
  • 2012
  • Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 10:4, s. 202-211
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: To describe how people with rheumatoid arthritis (RA) experience the care provided by Swedish nurse-led rheumatology outpatient clinics.METHODS: Eighteen adult people with a diagnosis of RA who had had at least three documented contact sessions with a nurse-led clinic were interviewed. The interviews were analysed with qualitative content analysis.RESULTS: Care was expressed in three categories: social environment, professional approach and value-adding measures. A social environment including a warm encounter, a familial atmosphere and pleasant premises was desired and contributed to a positive experience of care. The nurses' professional approach was experienced as empathy, knowledge and skill, as well as support. The care was described as person centred and competent, as it was based on the individual's unique experience of his/her disease and needs. The nurses' specialist knowledge of rheumatology and rheumatology care was highly valued. The offered care represented added value for the participants, instilling security, trust, hope and confidence. It was perceived as facilitating daily life and creating positive emotions. The nurse-led clinics were reported to be easily accessible and provided continuity of the care. These features were presented as fundamental guarantees for health care safety.CONCLUSION: The experiences emphasized the need for a holistic approach to care. In this process, the organization of care and the role and skills of the nurse should be focused on the individual's needs and perspectives. The social environment, professional approach and value-adding measures are particularly relevant for optimal care at nurse-led rheumatology outpatient clinics.
  •  
18.
  • 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. - 0003-4967 .- 1468-2060. ; 76, 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.
  •  
19.
  •  
20.
  • Bladh, Stina, et al. (författare)
  • Psychometric performance of a generic walking scale (Walk-12G) in Multiple Sclerosis and Parkinson's disease
  • 2012
  • Ingår i: Journal of Neurology. - Heidelberg : Springer Berlin/Heidelberg. - 0340-5354 .- 1432-1459. ; 259:4, s. 729-738
  • Tidskriftsartikel (refereegranskat)abstract
    • Walking difficulties are common in neurological and other disorders, as well as among the elderly. There is a need for reliable and valid instruments for measuring walking difficulties in everyday life since existing gait tests are clinician rated and focus on situation specific capacity. The Walk-12G was adapted from the 12-item multiple sclerosis walking scale as a generic patient-reported rating scale for walking difficulties in everyday life. The aim of this study is to examine the psychometric properties of the Walk-12G in people with multiple sclerosis (MS) and Parkinson’s disease (PD). The Walk-12G was translated into Swedish and evaluated qualitatively among 25 people with and without various neurological and other conditions. Postal survey (MS, n = 199; PD, n = 189) and clinical (PD, n = 36) data were used to test its psychometric properties. Respondents considered the Walk-12G relevant and easy to use. Mean completion time was 3.5 min. Data completeness was good (<5% missing item responses) and tests of scaling assumptions supported summing item scores to a total score (corrected item-total correlations >0.6). Coefficient alpha and test–retest reliabilities were >0.9, and standard errors of measurement were 2.3–2.8. Construct validity was supported by correlations in accordance with a priori expectations. Results are similar to those with previous Walk-12G versions, indicating that scale adaptation was successful. Data suggest that the Walk-12G meets rating scale criteria for clinical trials, making it a valuable complement to available gait tests. Further studies involving other samples and application of modern psychometric methods are warranted to examine the scale in more detail.
  •  
21.
  • Blom, Lisbeth, et al. (författare)
  • The SBAR model for communication between health care professionals : a clinical intervention pilot study.
  • 2015
  • Ingår i: International Journal of Caring Sciences. - 1791-5201 .- 1792-037X. ; 8:3, s. 530-535
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: SBAR has been suggested as a means to avoid unclear communication between health care professionals and in turn enhance patient safety in the healthcare sector. Aim: to evaluate hospital-based health care professionals experiences from using the Situation, Background, Assessment and Recommendation (SBAR) communication model. Methodology: A quantitative, descriptive, comparative pre- and post-intervention questionnaire-based pilot study before and after the implementation of SBAR at surgical hospitals wards. Open comments to questionnaire items were analyzed qualitatively. Results: The introduction of SBAR increased the experience of having a well-functioning structure for oral communication among health care professionals regarding patients’ conditions. Qualitative findings revealed the categories: Use of SBAR as a structure, Reporting time, Patient safety, and Personal aspects. Conclusions: SBAR is perceived as effective to get a structure of the content in patient reports, which may facilitate patient safety.
  •  
22.
  • Blom, Lisbeth, et al. (författare)
  • The SBAR model for communication between health care professionals : a clinical intervention pilot study.
  • 2015
  • Ingår i: International Journal of Caring Sciences. - : Athens Alexander Technological Educational Institu. - 1791-5201. ; 8:3, s. 530-535
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: SBAR has been suggested as a means to avoid unclear communication between health care professionals and in turn enhance patient safety in the healthcare sector.   Aim: to evaluate hospital-based health care professionals experiences from using the Situation, Background, Assessment and Recommendation (SBAR) communication model.   Methodology: A quantitative, descriptive, comparative pre- and post-intervention questionnaire-based pilot study before and after the implementation of SBAR at surgical hospitals wards. Open comments to questionnaire items were analyzed qualitatively.   Results: The introduction of SBAR increased the experience of having a well-functioning structure for oral communication among health care professionals regarding patients’ conditions. Qualitative findings revealed the categories: Use of SBAR as a structure, Reporting time, Patient safety, and Personal aspects.   Conclusions: SBAR is perceived as effective to get a structure of the content in patient reports, which may facilitate patient safety.
  •  
23.
  • Bolejko, Anetta, et al. (författare)
  • A roller coaster of emotions and sense : coping with the perceived psychosocial consequences of a false-positive screening mammography
  • 2014
  • Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 23:13-13, s. 2053-2062
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims and objectives To explore coping with the perceived psychosocial consequences of a false-positive screening mammography. Background Mammographic screening has been found effective to decrease breast cancer (BC) mortality, yet there are adverse effects. Psychosocial consequences of false-positive mammographic screening have mainly been investigated from a population-based perspective. A call for qualitative studies to further explore these consequences has thus been postulated. To date, qualitative studies have elucidated women's experiences following their recall breast examinations, but their coping with perceived psychosocial consequences of a false-positive screening mammography has not yet been explored. Design An explorative qualitative study. Methods Face-to-face interviews were held with a purposive heterogeneous sample of 13 Swedish-speaking women with a false-positive screening mammography. The transcripts were analysed by the use of an inductive content analysis. Results Coping with the perceived psychosocial consequences of a false-positive screening mammography implied a roller coaster of emotion and sense. Women described how they imagined the worst and were in a state of uncertainty feeling threatened by a fatal disease. Conversely, they felt protected, surrounded by their families and being professionally taken care of, which together with perceived sisterhood and self-empowerment evoked strength and hope. Being aware of family responsibility became a crucial matter. Experiencing false-positive screening raised thoughts of thankfulness and reappraisal of life, although an ounce of BC anxiety remained. Consequently, gained awareness about BC screening and values in life surfaced. Conclusions Experiencing a false-positive screening mammography triggers agonising experiences evoking a variety of coping strategies. Provision of screening raises the issue of responsibility for an impact on psychosocial well-being among healthy women. Relevance to clinical practice Gained knowledge might provide a basis for interventions to prevent psychosocial consequences of false-positive mammographic screening and provide support for women with a potentially compromised ability to overcome such consequences.
  •  
24.
  • Bolejko, Anetta, et al. (författare)
  • A roller coaster of emotions and sense : coping with the perceived psychosocial consequences of a false-positive screening mammography
  • 2014
  • Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 23:13-14, s. 2053-2062
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims and objectives To explore coping with the perceived psychosocial consequences of a false-positive screening mammography. Background Mammographic screening has been found effective to decrease breast cancer (BC) mortality, yet there are adverse effects. Psychosocial consequences of false-positive mammographic screening have mainly been investigated from a population-based perspective. A call for qualitative studies to further explore these consequences has thus been postulated. To date, qualitative studies have elucidated women's experiences following their recall breast examinations, but their coping with perceived psychosocial consequences of a false-positive screening mammography has not yet been explored. Design An explorative qualitative study. Methods Face-to-face interviews were held with a purposive heterogeneous sample of 13 Swedish-speaking women with a false-positive screening mammography. The transcripts were analysed by the use of an inductive content analysis. Results Coping with the perceived psychosocial consequences of a false-positive screening mammography implied a roller coaster of emotion and sense. Women described how they imagined the worst and were in a state of uncertainty feeling threatened by a fatal disease. Conversely, they felt protected, surrounded by their families and being professionally taken care of, which together with perceived sisterhood and self-empowerment evoked strength and hope. Being aware of family responsibility became a crucial matter. Experiencing false-positive screening raised thoughts of thankfulness and reappraisal of life, although an ounce of BC anxiety remained. Consequently, gained awareness about BC screening and values in life surfaced. Conclusions Experiencing a false-positive screening mammography triggers agonising experiences evoking a variety of coping strategies. Provision of screening raises the issue of responsibility for an impact on psychosocial well-being among healthy women.
  •  
25.
  • Bolejko, Anetta, et al. (författare)
  • Adaptation to Swedish and further development of the ‘Consequences of Screening – Breast Cancer’ questionnaire : a multimethod study
  • 2013
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Springer. - 0283-9318 .- 1471-6712. ; 27:2, s. 475-486
  • Tidskriftsartikel (refereegranskat)abstract
    • Rationale:  Experiencing a false-positive screening mammography can cause considerable psychosocial distress. The Consequences of Screening – Breast Cancer questionnaire (COS-BC parts 1 and 2), recently developed in Denmark, is the only condition-specific questionnaire for measuring short- and long-term psychosocial consequences of false-positive mammographic screening. Additional studies are needed to further test the COS-BC before use across cultures. Furthermore, studies have suggested that the consequences of false-positive screening results are partly common across cancer screening settings, although this hypothesis remains largely untested.Objectives:  This study (i) assesses content validity of a Swedish version of the COS-BC, (ii) tests whether items expressing long-term consequences of false-positive lung cancer screening results are relevant in a breast cancer screening context and (iii) explores the usefulness of taking results from Rasch analyses of the source version as an aid in questionnaire translation and adaptation.Methods:  Following dual-panel translation, content validity was assessed through qualitative interviews with representatives of the target population and the content validity index (CVI). Item locations and Rasch model fit of the source questionnaires were considered in the translation and assessment process.Results:  The COS-BC items were generally found relevant and provided coverage of the target construct. Content validity was supported also for nine of 10 lung cancer screening items. Scale CVI values were ≥0.81. Previous Rasch data were useful in facilitating translation and assessing item content validity. The resulting Swedish version of the COS-BC parts 1 and 2 consists of 34 and 23 items, respectively.Conclusion:  This study illustrates the value of methodological triangulation and use of data from previous Rasch analyses in questionnaire translation and adaptation. We found support for the hypothesis that consequences of false-positive screening are common across cancer screening settings. Psychometric properties of the Swedish COS-BC remain to be established.
  •  
26.
  • Bolejko, Anetta, et al. (författare)
  • Adaptation to Swedish and further development of the 'Consequences of Screening - Breast Cancer' questionnaire : a multimethod study
  • 2013
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Springer. - 0283-9318 .- 1471-6712. ; 27:2, s. 475-486
  • Tidskriftsartikel (refereegranskat)abstract
    • Experiencing a false-positive screening mammography can cause considerable psychosocial distress. The Consequences of Screening - Breast Cancer questionnaire (COS-BC parts 1 and 2), recently developed in Denmark, is the only condition-specific questionnaire for measuring short- and long-term psychosocial consequences of false-positive mammographic screening. Additional studies are needed to further test the COS-BC before use across cultures. Furthermore, studies have suggested that the consequences of false-positive screening results are partly common across cancer screening settings, although this hypothesis remains largely untested. This study (i) assesses content validity of a Swedish version of the COS-BC, (ii) tests whether items expressing long-term consequences of false-positive lung cancer screening results are relevant in a breast cancer screening context and (iii) explores the usefulness of taking results from Rasch analyses of the source version as an aid in questionnaire translation and adaptation.Following dual-panel translation, content validity was assessed through qualitative interviews with representatives of the target population and the content validity index (CVI). Item locations and Rasch model fit of the source questionnaires were considered in the translation and assessment process.The COS-BC items were generally found relevant and provided coverage of the target construct. Content validity was supported also for nine of 10 lung cancer screening items. Scale CVI values were ≥0.81. Previous Rasch data were useful in facilitating translation and assessing item content validity. The resulting Swedish version of the COS-BC parts 1 and 2 consists of 34 and 23 items, respectively. This study illustrates the value of methodological triangulation and use of data from previous Rasch analyses in questionnaire translation and adaptation. We found support for the hypothesis that consequences of false-positive screening are common across cancer screening settings. Psychometric properties of the Swedish COS-BC remain to be established.
  •  
27.
  • Bolejko, Anetta, et al. (författare)
  • Meeting Patient Information Needs Before Magnetic Resonance Imaging : Development and Evaluation of an Information Booklet
  • 2008
  • Ingår i: Journal of Radiology Nursing. - : Elsevier BV. - 1546-0843. ; 27:3, s. 96-102
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim was to develop and evaluate a preparatory information booklet for adult patients undergoing magnetic resonance imaging (MRI). The booklet was developed based on pertinent literature and clinical experience. After ethical approval, it was then evaluated qualitatively in 10 people who had received the booklet before their first ever MRI scan. All patients expressed the need for written preparatory information and seven had experienced prescan anxiety and discomfort. Participants found the booklet informative and easily understood, and expressed appreciation related to procedural, behavioral, and sensory information. A few minor misunderstandings were revealed. The impressions by previously MRI-naive participants in this study indicate that the information booklet was successful in providing procedural, behavioral, and sensory information. Minor booklet modifications should provide means to circumvent current misunderstandings. The process used to develop and evaluate the information booklet for this study illustrates an easily implemented strategy to meet patients' needs for preparatory information in clinical practice.
  •  
28.
  • Bolejko, Anetta, et al. (författare)
  • Prevalence, Long-term Development, and Predictors of Psychosocial Consequences of False-Positive Mammography among Women Attending Population-Based Screening
  • 2015
  • Ingår i: Cancer Epidemiology, Biomarkers and Prevention. - : American Association for Cancer Research. - 1055-9965 .- 1538-7755. ; 24:9, s. 1388-1397
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Cancer screening aims to detect cancer at an asymptomatic stage, although side effects from screening also occur. We investigated the prevalence, longitudinal development, and predictors of psychosocial consequences of false-positive breast cancer screening. METHODS: Three hundred ninety-nine women with false-positive screening mammography responded to the Consequences of Screening-Breast Cancer (COS-BC) questionnaire immediately after a negative diagnosis (free from breast cancer) following recall examination(s) (baseline), and 6 and 12 months later. Age-matched controls (n = 499) with a negative mammogram responded to the COS-BC at the same occasions. Five COS-BC scales (Sense of dejection, Anxiety, Behavioral, Sleep, and Existential values) were used as outcome measures. RESULTS: Women with false-positive mammography had consistently higher prevalence of all five consequences compared with controls (P < 0.001). The prevalences decreased between baseline and 6 months (P < 0.001) but were stable between 6 and 12 months (P ≥ 0.136). Early recall profoundly predicted long-term consequences for all five outcomes (OR, 3.05-10.31), along with dissatisfaction with information at recall (OR, 2.28-2.56), being foreign-born (OR, 2.35-3.71), and lack of social support (OR, 1.13-1.25). CONCLUSION: This 1-year longitudinal study shows that women experience psychosocial consequences of false-positive screening mammography. Early recall should be performed cautiously, and provision of information as well as social support may reduce psychosocial consequences. IMPACT: Although delivery of population-based screening reduces breast cancer mortality, it also raises the issue of its impact on the psychosocial well-being of healthy women. Our findings identify predictors that can be targeted in future efforts to reduce the side effects of mammographic screening.
  •  
29.
  • Bolejko, Anetta, et al. (författare)
  • Psychometric properties of a Swedish version of the Consequences of Screening : Breast Cancer questionnaire
  • 2014
  • Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 70:10, s. 2373-2388
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To evaluate the psychometric properties of a questionnaire addressing psychosocial consequences of false-positive mammographic screening.BACKGROUND: The Consequences of Screening - Breast Cancer and Lung Cancer questionnaires target psychosocial consequences of false-positive cancer screening. The Consequences of Screening - Breast Cancer questionnaire and ten items not considered lung cancer specific from the Lung Cancer questionnaire have been adapted for use in mammographic screening in Sweden, but remain psychometrically untested.DESIGN: Instrument development paper with psychometric cross-sectional and test-retest design.METHODS: Twelve scales of a Swedish questionnaire version were tested by the Rasch model and traditional psychometric methods. Women with false-positive (Group I, n = 640) and negative (Group II, n = 802) screening mammography responded to the study questionnaire and the Nottingham Health Profile during 2009-2011.RESULTS: Iterative analyses resulted in nine scales demonstrating Rasch model fit, but all scales exhibited poor targeting with relatively large floor effects. Corrected item-total correlations exceeded the recommended criterion. Score differences between Groups I and II and correlations with Nottingham Health Profile sections followed an expected pattern. Cronbach's α and test-retest reliability was acceptable for group-level assessments for ten and seven scales, respectively.CONCLUSIONS: Five scales (Sense of dejection, Anxiety, Behavioural, Sleep and Existential values) of the Swedish questionnaire version demonstrated the best psychometric properties. Other scales should be used more cautiously. Although filling an important gap, causes of concern were identified across scales. The questionnaire should therefore be considered for group-level assessments rather than for measurement of individual degrees of psychosocial consequences.
  •  
30.
  • Bolejko, Anetta, et al. (författare)
  • Psychometric properties of a Swedish version of the Consequences of Screening : Breast Cancer questionnaire
  • 2014
  • Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 70:10, s. 2373-2388
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To evaluate the psychometric properties of a questionnaire addressing psychosocial consequences of false-positive mammographic screening. BACKGROUND: The Consequences of Screening--Breast Cancer and Lung Cancer questionnaires target psychosocial consequences of false-positive cancer screening. The Consequences of Screening--Breast Cancer questionnaire and ten items not considered lung cancer specific from the Lung Cancer questionnaire have been adapted for use in mammographic screening in Sweden, but remain psychometrically untested. DESIGN: Instrument development paper with psychometric cross-sectional and test-retest design. METHODS: Twelve scales of a Swedish questionnaire version were tested by the Rasch model and traditional psychometric methods. Women with false-positive (Group I, n = 640) and negative (Group II, n = 802) screening mammography responded to the study questionnaire and the Nottingham Health Profile during 2009-2011. RESULTS: Iterative analyses resulted in nine scales demonstrating Rasch model fit, but all scales exhibited poor targeting with relatively large floor effects. Corrected item-total correlations exceeded the recommended criterion. Score differences between Groups I and II and correlations with Nottingham Health Profile sections followed an expected pattern. Cronbach's α and test-retest reliability was acceptable for group-level assessments for ten and seven scales, respectively. CONCLUSIONS: Five scales (Sense of dejection, Anxiety, Behavioural, Sleep and Existential values) of the Swedish questionnaire version demonstrated the best psychometric properties. Other scales should be used more cautiously. Although filling an important gap, causes of concern were identified across scales. The questionnaire should therefore be considered for group-level assessments rather than for measurement of individual degrees of psychosocial consequences.
  •  
31.
  • Brundin, Patrik, et al. (författare)
  • Bilateral caudate and putamen grafts of embryonic mesencephalic tissue treated with lazaroids in Parkinson's disease
  • 2000
  • Ingår i: Brain. - 1460-2156. ; 123, s. 1380-1390
  • 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.
  •  
32.
  • Brundin, Patrik, et al. (författare)
  • The neurobiology of cell transplantation in Parkinson's disease
  • 2001
  • Ingår i: Clinical Neuroscience Research. - 1873-779X. ; 1:6, s. 507-520
  • Tidskriftsartikel (refereegranskat)abstract
    • Over the past decade, neural grafting has emerged as a new treatment option for Parkinson's disease. When performed successfully, grafts of human embryonic neural tissue can give rise to major symptomatic relief in patients, However, a recent report on a double-blind placebo control study, which received worldwide attention, described less pronounced beneficial effects of the grafts, and found them to be significant only in patients younger than 60 years of age. Moreover, a subgroup of patients developed disabling dyskinesias as a result of the surgery. These findings, and great logistical problems in coordinating the harvesting of sufficient amounts of suitable human embryonic donor tissue with the transplantation surgery, have led the scientific community to question whether cell transplantation really has a future as a therapy for Parkinson's disease. In this review, we argue that the future of neural transplantation for Parkinson's disease is still bright. We relate clinical findings to observations made in experimental animals grafted with embryonic neural tissue and seek explanations for the variability in outcome seen in the clinical trials. We also briefly discuss alternative sources of donor tissue that may be applied in future clinical trials, and mention what features of cells may be crucial for them to be suitable as donor tissue for transplantation in Parkinson's disease.
  •  
33.
  • Carina, Hellqvist, et al. (författare)
  • A national Swedish self- management program for people with Parkinson’s disease : patients and relatives view
  • 2017
  • Ingår i: Movement Disorders. ; , s. 175-176
  • Konferensbidrag (refereegranskat)abstract
    • Objective: To identify and describe experiences that people with PD and their relatives after participation inthe self-management intervention NPS (National Parkinson School) find valuable for managing daily life.Background: A self-management program called NPS was developed as a collaboration of healthcare providers, researchers and patient organizations. NPS is aiming to provide tools and strategies for people with PD and their relatives to increase ability to manage symptoms and consequences of disease and thereby improving conditions for a good life. Self-monitoring and self-management are central concepts. NPS focuses on life with PD, which via 7 sessions consisting of education/lectures and group discussions are mediated. Home assignments make participants practice the new skills in their own life.Methods: The last session, evaluation of the NPS, was audio recorded in its whole and transcribed verbatim. Data was collected from five separate clinics and analysed both inductively and deductively using Thematic Analysis and by applying the Self-and Family management theory.Results: Through inductive analysis three themes; Exchanging experiences and feeling support, Adjustment and acceptance of PD for managing daily life and Promoting life satisfaction, were identified and described. The themes are capturing the meaning, value and experience of being a participant of NPS. Deductive analysis indicated thatthe Self-and Family management theory was useful and valid for this group of patients and generated a modified framework applicable for patients with PD and their families [figure1].Conclusions: Living with PD affects patients as well as relatives. Meeting others in the same situation gives support and strengthen their self- image. Having the opportunity sharing experiences and practical advices showed that there was a hopeful future to come. Techniques to accept and manage life with PD included seeking information about disease and treatments, self-monitoring in order to adjust to new situations and improve symptoms of disease and having a positive mind-set. Living an active life, participating in enjoyable social, cultural, and physical activities were important to feel happy and satisfied with life. Participation in NPS covered many areas of importance for the ability of self-management in PD. The framework for self-management in chronic disease was found relevant also for the PD population
  •  
34.
  • Carina, Hellqvist, et al. (författare)
  • A national Swedish self- management program for people with Parkinson’s disease : patients and relatives view
  • 2017
  • Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
    • Objective: To identify and describe experiences that people with PD and their relatives after participation inthe self-management intervention NPS (National Parkinson School) find valuable for managing daily life. Background: A self-management program called NPS was developed as a collaboration of healthcare providers, researchers and patient organizations. NPS is aiming to provide tools and strategies for people with PD and their relatives to increase ability to manage symptoms and consequences of disease and thereby improving conditions for a good life. Self-monitoring and self-management are central concepts. NPS focuses on life with PD, which via 7 sessions consisting of education/lectures and group discussions are mediated. Home assignments make participants practice the new skills in their own life. Methods: The last session, evaluation of the NPS, was audio recorded in its whole and transcribed verbatim. Data was collected from five separate clinics and analysed both inductively and deductively usingThematic Analysis and by applying the Self-and Family management theory. Results: Through inductive analysis three themes; Exchanging experiences and feeling support, Adjustment and acceptance of PD for managing daily life and Promoting life satisfaction, were identified and described. The themes are capturing the meaning, value and experience of being a participant of NPS. Deductive analysis indicated thatthe Self-and Family management theory was useful and valid for this group of patients and generated a modified framework applicable for patients with PD and their families [figure1]. Conclusions: Living with PD affects patients as well as relatives. Meeting others in the same situation gives support and strengthen their self- image. Having the opportunity sharing experiences and practical advices showed that there was a hopeful future to come. Techniques to accept and manage life with PD included seeking information about disease and treatments, self-monitoring in order to adjust to new situations and improve symptoms of disease and having a positive mind-set. Living an active life, participating in enjoyable social, cultural, and physical activities were important to feel happy and satisfied with life. Participation in NPS covered many areas of importance for the ability of self-management in PD. The framework for self-management in chronic disease was found relevant also for the PD population
  •  
35.
  • Cenci Nilsson, Angela, et al. (författare)
  • Dyskinesias and neural grafting in Parkinson's disease
  • 2006
  • Ingår i: Restorative Therapies in Parkinson's Disease. - : Springer US. - 9780387299846 - 9780387328232 ; , s. 184-224
  • Bokkapitel (populärvet., debatt m.m.)abstract
    • In the past 20 years, intracerebral transplantation of embryonic ventral mesencephalic (VM) tissue has been looked upon as a particularly promising approach for the treatment of Parkinson's disease (PD). Among the many possible treatment options for the future, transplantation bore the promise of a truly curative approach: endogeneous, degenerating dopamine (DA) neurons would be substituted for by healthy DA-producing cells, restoring the damaged nigrostriatal circuit once and for all (Nikkhah and Brandis, 1995; Barker, 2000; Fricker-Gates et al., 2001). Hopes were fostered by the encouraging results produced by intrastriatal VM transplants both in animal models of PD (Bj?rklund, 1992; Bj?rklund and Stenevi, 1979; Herman and Abrous, 1994; Perlow et al., 1979) and in early openlabel clinical trials (Lindvall, 1994; Lindvall and Hagell, 2000 and Chapter 5). The latter showed that embryonic VM tissue can engraft in the parkinsonian striatum and provide a local source of DA storage and release. In a majority of transplanted patients the grafts were found to ameliorate many of the symptoms of PD and to reduce the need for L-DOPA pharmacotherapy (Lindvall and Hagell, 2000). In addition to their immediate implications for PD, these results also suggested that neural cell replacement could develop into a radically new treatment approach for a wide range of neurological disorders (Gage et al., 1988; Lindvall and Bj?rklund, 1992; Aichner et al., 2002; Turner and Shetty, 2003; Grisolia, 2002; Peschansky and Dunnett, 2002; Studer et al., 1998). This early enthusiasm was dampened by alarming reports from the first NIH-sponsored clinical trial of neural transplantation, where a subgroup of patients had manifested a severe and persistent form of dyskinesia at late postoperative periods (Freed et al., 2001; Greene et al., 1999; Kolata, 2001 and Chapter 6). Other reports were soon to follow indicating that dyskinesias indeed can develop as a complication of intrastriatal VM grafting (Hagell et al., 2002; Ma et al., 2002; Olanow et al., 2003). These dyskinesias are a puzzling phenomenon that had not been foreseen by experimental studies of VM transplantation in animal models. This phenomenon does not presently lend itself to any simple explanation. In fact, current pathophysiological models are inadequate to explain the emergence of dyskinesia after interventions that can provide a source of continuous DA release in the striatum. Yet, understanding this issue appears essential in order to be able to plan further application of cell-replacement therapy in PD. In this chapter, we shall first provide a general review of the clinical spectrum and pathophysiology of the dyskinesias that complicate the treatment of PD. We shall then discuss the effects of VM grafts on L-DOPA-induced dyskinesias that are present prior to transplantation surgery. Thereafter, we will specifically address the issue of graft-induced dyskinesia, viz., an apparently novel clinical entity that is caused by the intrastriatal grafts themselves. Finally, we shall provide a speculative review of possible mechanisms underlying the development of dyskinesia following intrastriatal VM transplantation.
  •  
36.
  • de Roos, Paul, et al. (författare)
  • A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement
  • 2017
  • Ingår i: Journal of Parkinson's Disease. - : IOS Press. - 1877-7171 .- 1877-718X. ; 7:3, s. 533-543
  • 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.
  •  
37.
  •  
38.
  • Doward, Lynda C., et al. (författare)
  • International Development of the Unidimensional Fatigue Impact Scale (U-FIS)
  • 2010
  • Ingår i: Value in Health. - : Elsevier BV. - 1098-3015. ; 13:4, s. 463-468
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigue on patients with multiple sclerosis (MS). The objective is to produce eight new language versions of the U-FIS: Canadian-English, Canadian-French, French, German, Italian, Spanish, Swedish, and US-English. Methods: The U-FIS was translated via two translation panels. Cognitive debriefing interviews conducted with patients in each country assessed face and content validity. Scaling and psychometric properties were assessed via survey data with patients in each country completing the U-FIS, Nottingham Health Profile (NHP), and demographic questions. Results: Cognitive debriefing interviews demonstrated U-FIS acceptability. Analysis of postal survey data showed all new language versions to be unidimensional. Reliability was high, with test-retest correlations and internal-consistency coefficients exceeding 0.85. Initial evidence of validity was provided by moderate to high correlations with NHP scales. The U-FIS was able to discriminate between groups based on employment status, perceived MS severity, and general health. Conclusion: The U-FIS is a practical new measure of the impact of fatigue. It was successfully adapted into eight new languages to broaden availability for researchers. Psychometric analyses indicated that the new language versions were unidimensional and reproducible with promising construct validity.
  •  
39.
  • Eklund, Mona, et al. (författare)
  • Psychometric properties of a Swedish version of the Pearlin Mastery Scale in people with mental illness and healthy people
  • 2012
  • Ingår i: Nordic Journal of Psychiatry. - Abingdon : Taylor & Francis. - 0803-9488 .- 1502-4725. ; 66:6, s. 380-388
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Mastery refers to the degree to which people perceive that they can control factors that influence their life situation, and has been found important for people's quality of life and well-being. It is thus essential to be able to measure mastery in a valid and reliable way. Aim: This study aimed at using the Rasch measurement model to investigate the psychometric properties of a Swedish version of the Pearlin Mastery Scale (Mastery-S). Methods: A sample of 300 healthy individuals and 278 persons with mental illness responded to the Mastery-S. Item responses were Rasch analysed regarding model fit, response category functioning, differential item functioning (DIF) and targeting, using the partial credit model. Results: The Mastery-S items represented a logical continuum of the measured construct but one item displayed misfit. Reliability (Person Separation Index) was 0.7. The response categories did not work as expected in three items, which could be corrected for by collapsing categories. Three items displayed DIF between the two subsamples, which caused a bias when comparing mastery levels between subsamples, suggesting the Mastery-S is not truly generic. Conclusions: The Mastery-S may be used to obtain valid and reliable data, but some precautions should be made. If used to compare groups, new analyses of DIF should first be made. Users of the scale should also consider exempting item 6 from the scale and analyse it as a separate item. Finally, rewording of response categories should be considered in order to make them more distinct and thereby improve score reliability.
  •  
40.
  • Eklund, Mona, et al. (författare)
  • Rasch analysis of an instrument for measuring occupational value : Implications for theory and practice
  • 2009
  • Ingår i: Scandinavian Journal of Occupational Therapy. - London, UK : Informa Healthcare. - 1103-8128 .- 1651-2014. ; 16:2, s. 118-128
  • Tidskriftsartikel (refereegranskat)abstract
    • This study investigated psychometric properties of an instrument for assessing perceived occupational value, the 26-item OVal-pd. Data from 225 Swedish subjects with and without known mental illness were analysed regarding fit to the Rasch measurement model (partial credit model), differential item functioning (DIF), and functioning of the OVal-pd four-category response scale. The reliability (index of person separation, analogous to Cronbach's alpha) was good (0.92) but there were signs of overall and item level (six items) misfit. There was DIF between people with and without mental illness for three items. Iterative deletion of misfitting items resulted in a new 18-item DIF-free scale with good overall and individual item fit and maintained reliability (0.91). There were no disordered response category thresholds. These observations also held true in separate analyses among people with and without mental illness. Thus, the first steps of ensuring that occupational value can be measured in a valid and reliable way have been taken. Still, occupational value is a dynamic construct and the aspects that fit the construct may vary between contexts. This has implications for, e.g., cross-cultural research and calls for identification of a core set of culture-free items to allow for valid cross-cultural comparisons. Copyright © 2009 Informa UK Limited
  •  
41.
  • Ekstrand, Joakim, et al. (författare)
  • Transformation of Rasch model logits for enhanced interpretability
  • 2022
  • Ingår i: BMC Medical Research Methodology. - : BioMed Central (BMC). - 1471-2288. ; 22:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The Rasch model allows for linear measurement based on ordinal item responses from rating scales commonly used to assess health outcomes. Such linear measures may be inconvenient since they are expressed as log-odds units (logits) that differ from scores that users may be familiar with. It can therefore be desirable to transform logits into more user-friendly ranges that preserve their linear properties. In addition to user-defined ranges, three general transformations have been described in the literature: the least measurable difference (LMD), the standard error of measurement (SEM) and the least significant difference (LSD). The LMD represents the smallest possible meaningful unit, SEM relates the transformed scale values to measurement uncertainty (one unit on the transformed scale represents roughly one standard error), and LSD represents a lower bound for how coarse the transformed scale can be without loss of valid information. However, while logit transformations are relatively common in the health sciences, use of LMD, SEM and LSD transformations appear to be uncommon despite their potential role. Methods: Logit transformations were empirically illustrated based on 1053 responses to the Epworth Sleepiness Scale. Logit measures were transformed according to the LMD, SEM and LSD, and into 0-10, 0-100, and the original raw score (0-24) ranges. These transformations were conducted using a freely available Excel tool, developed by the authors, that transforms logits into user-defined ranges along with the LMD, SEM and LSD transformations. Results: Resulting LMD, SEM and LSD transformations ranged 0-34, 0-17 and 0-12, respectively. When considering these relative to the three user-defined ranges, it is seen that the 0-10 range is narrower than the LSD range (i.e., loss of valid information), and a 0-100 range gives the impression of better precision than there is, since it is considerably wider than the LMD range. However, the 0-24 transformation appears reasonable since it is wider than the LSD, but narrower than the LMD ranges. Conclusions: It is suggested that LMD, SEM and LSD transformations are valuable for benchmarking in deciding appropriate ranges when transforming logit measures. This process can be aided by the Excel tool presented and illustrated in this paper.
  •  
42.
  • Friedman, Joseph H., et al. (författare)
  • Fatigue Rating Scales Critique and Recommendations by the Movement Disorders Society Task Force on Rating Scales for Parkinson's Disease
  • 2010
  • Ingår i: Movement Disorders. - : Wiley. - 0885-3185. ; 25:7, s. 805-822
  • Forskningsöversikt (refereegranskat)abstract
    • Fatigue has been shown to be a consistent and common problem in Parkinson's disease (PD) in multiple countries and cultures. It is one of the most disabling of all symptoms, including motor dysfunction, and appears early, often predating the onset of motor symptoms. Several studies of the epidemiology of fatigue have been published, often using different scales, but few on treatment. The Movement Disorder Society (MDS) commissioned a task force to assess available clinical rating scales, critique their psychometric properties, summarize their clinical properties, and evaluate the evidence in support of their use in clinical studies in PD. Six clinical researchers reviewed all studies published in peer reviewed journals of fatigue in PD, evaluated the scales' previous use, performance parameters, and quality of validation data, if available. Scales were rated according to criteria provided by the MDS. A scale was "recommended" if it has been used in clinical studies beyond the group that developed it, has been used in PD and psychometric studies have established that it is a valid, reliable and sensitive to change in people with PD. Requiring a scale to have demonstrated sensitivity to change in PD specifically rather than in other areas in order to attain a rating of "recommended" differs from the use of this term in previous MDS task force scale reviews. "Suggested" scales failed to meet all the criteria of a "recommended" scale, usually the criterion of sensitivity to change in a study of PD. Scales were "listed" if they had been used in PD studies but had little or no psychometric data to assess. Some scales could be used both to screen for fatigue as well as to assess fatigue severity, but some were only used to assess severity. The Fatigue Severity Scale was "recommended" for both screening and severity rating. The Fatigue Assessment Inventory, an expanded version of the Fatigue severity Scale, is "suggested" for both screening and severity. The Functional Assessment of Chronic Illness Therapy-Fatigue was "recommended" for screening and "suggested" for severity. The Multidimensional Fatigue Inventory was "suggested" for screening and "recommended" for severity. The Parkinson Fatigue Scale was "recommended" for screening and "suggested" for severity rating. The Fatigue Severity Inventory was "listed" for both screening and severity. The Fatigue Impact Scale for Daily Use, an adaptation of the Fatigue Impact Scale was "listed" for screening and "suggested" for severity. Visual Analogue and Global Impression Scales are both "listed" for screening and severity. The committee concluded that current scales are adequate for fatigue studies in PD but that studies on sensitivity and specificity of the scales are still needed. (C) 2010 Movement Disorder Society
  •  
43.
  •  
44.
  • Garmy, Pernilla, 1973-, et al. (författare)
  • Is sleep duration associated with self-reported overall health, screen time, and nighttime texting among adolescents?
  • 2019
  • Ingår i: Journal of international medical research. - 0300-0605 .- 1473-2300.
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectivesWe aimed to investigate whether sleep duration is associated with self-reported overall health, screen time, and nighttime texting among Swedish adolescents.MethodsThis was a cross-sectional survey of students (n = 1518) aged 13 to 15 years (50.7% girls) in southern Sweden.ResultsFewer than 8 hours sleep duration before a school day was reported by 31% of students. The median time spent watching television and/or at the computer was 3 hours, and 43% of students reported texting at night one or more times per week. Sleeping fewer than 8 hours was significantly associated with poorer self-reported overall health, often being tired at school, increased screen time, and a habit of nighttime texting.ConclusionsShort sleep duration (<8 hours) was associated with poor self-reported health, increased screen time, and nighttime texting among respondents. These results provide information for parents, educators, and school health professionals to encourage young people to adopt healthy screen habits and sleep hygiene.
  •  
45.
  • Garmy, Pernilla, et al. (författare)
  • Is sleep duration associated with self-reported overall health, screen time, and nighttime texting among adolescents?
  • 2020
  • Ingår i: Journal of International Medical Research. - : SAGE Publications. - 1473-2300 .- 0300-0605. ; 48:3, s. 1-8
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVES: We aimed to investigate whether sleep duration is associated with self-reported overall health, screen time, and nighttime texting among Swedish adolescents.METHODS: This was a cross-sectional survey of students (n = 1518) aged 13 to 15 years (50.7% girls) in southern Sweden.RESULTS: Fewer than 8 hours sleep duration before a school day was reported by 31% of students. The median time spent watching television and/or at the computer was 3 hours, and 43% of students reported texting at night one or more times per week. Sleeping fewer than 8 hours was significantly associated with poorer self-reported overall health, often being tired at school, increased screen time, and a habit of nighttime texting.CONCLUSIONS: Short sleep duration (<8 hours) was associated with poor self-reported health, increased screen time, and nighttime texting among respondents. These results provide information for parents, educators, and school health professionals to encourage young people to adopt healthy screen habits and sleep hygiene.
  •  
46.
  •  
47.
  •  
48.
  •  
49.
  • Garmy, Pernilla, et al. (författare)
  • Psychometric analysis of the Salutogenic Health Indicator Scale (SHIS) in adolescents
  • 2017
  • Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications Ltd. - 1403-4948 .- 1651-1905. ; 45:3, s. 253-259
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim: The aim of this study was to test the psychometric properties of the Salutogenic Health Indicator Scale (SHIS) in an adolescent population. Methods: The investigation was performed among Swedish students aged 13–15 years (n = 817; 58% girls). The SHIS was assessed for respondent acceptability, and its psychometric properties were evaluated according to classical test theory (regarding unidimensionality, targeting, reliability, and external construct validity). Results: The adolescents found it easy to complete the questionnaire, which was completed in an average of 4 minutes. Exploratory factor analysis, which is based on polychoric correlations, identified one factor, supporting the instrument’s unidimensionality. Floor/ceiling effects were ⩽ 3.3%. Reliability estimates yielded a Cronbach’s alpha value of 0.93; the test–retest reliability (n = 50; 2-week interval) coefficients were 0.89 for the total SHIS score and 0.52–0.79 for item scores. Spearman correlations with other variables were based on a priori expectations (self-rated general health, 0.595; depressive symptoms, −0.773; anxiety, −0.577; and sleep problems, 0.519). Conclusions: Our observations support both the acceptability and the psychometric properties of the SHIS as a brief, unidimensional assessment tool for salutogenic health in adolescents. Further studies using modern test theory are needed to better understand the measurement properties of the SHIS, including the functioning of its response categories and its comparability between adolescents and adults.
  •  
50.
  •  
Skapa referenser, mejla, bekava och länka
  • Resultat 1-50 av 419
Typ av publikation
tidskriftsartikel (274)
konferensbidrag (111)
bok (11)
bokkapitel (7)
forskningsöversikt (6)
rapport (5)
visa fler...
doktorsavhandling (3)
annan publikation (1)
licentiatavhandling (1)
visa färre...
Typ av innehåll
refereegranskat (302)
övrigt vetenskapligt/konstnärligt (105)
populärvet., debatt m.m. (12)
Författare/redaktör
Hagell, Peter (389)
Westergren, Albert (75)
Nilsson, Maria H. (53)
Westergren, Albert, ... (35)
Odin, Per (31)
Hagell, Peter, 1966- (27)
visa fler...
Lindvall, Olle (24)
Lindholm, Beata (22)
McKenna, Stephen P. (22)
Nilsson, Maria (21)
Hansson, Oskar (20)
Sjödahl Hammarlund, ... (20)
Iwarsson, Susanne (18)
Hedin, Gita (18)
Garmy, Pernilla (17)
Lindskov, Susanne (17)
Hariz, Gun-Marie (15)
Samuelson, Karin (12)
Reimer, Jan (12)
Widner, Håkan (11)
Bala, Sidona Valenti ... (11)
Rosqvist, Kristina (11)
Brundin, Patrik (10)
Wann-Hansson, Christ ... (10)
Höglund, Arja (10)
Tønnesen, Hanne (9)
Heaney, Alice (9)
Björklund, Anders (8)
Hellström, Amanda (8)
Broman, Jan-Erik (8)
Bolejko, Anetta (8)
Willman, Ania (8)
Edfors, Ellinor (8)
Zackrisson, Sophia (7)
Jakobsson, Ulf (7)
Dizdar, Nil (7)
Rehncrona, Stig (7)
Svensson, Björn (6)
Smith, Steve (6)
Fridlund, Bengt (6)
Nyberg, Per (6)
Odin, P (6)
Garmy, Pernilla, 197 ... (6)
Wictorin, Klas (6)
Fredrikson, Sten (6)
Martinez-Martin, Pab ... (6)
Hedin, Gita, 1978- (6)
Norell-Clarke, Annik ... (6)
Hellqvist, Carina (6)
Stubbendorff, Anna (6)
visa färre...
Lärosäte
Högskolan Kristianstad (312)
Lunds universitet (179)
Linnéuniversitetet (13)
Malmö universitet (12)
Karolinska Institutet (11)
Linköpings universitet (9)
visa fler...
Jönköping University (9)
Uppsala universitet (7)
Blekinge Tekniska Högskola (6)
Örebro universitet (5)
Umeå universitet (4)
Högskolan i Halmstad (2)
RISE (2)
Karlstads universitet (2)
Marie Cederschiöld högskola (2)
Göteborgs universitet (1)
Försvarshögskolan (1)
Röda Korsets Högskola (1)
visa färre...
Språk
Engelska (385)
Svenska (33)
Tyska (1)
Forskningsämne (UKÄ/SCB)
Medicin och hälsovetenskap (349)
Samhällsvetenskap (7)
Naturvetenskap (6)

År

Kungliga biblioteket hanterar dina personuppgifter i enlighet med EU:s dataskyddsförordning (2018), GDPR. Läs mer om hur det funkar här.
Så här hanterar KB dina uppgifter vid användning av denna tjänst.

 
pil uppåt Stäng

Kopiera och spara länken för att återkomma till aktuell vy