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  • 1.
    Bladh, Stina
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Nilsson, Maria
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hariz, Gun-Marie
    Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Hobart, Jeremy
    Department of Clinical Neuroscience, Peninsula Medical School, Plymouth, UK.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Psychometric performance of a generic walking scale (Walk-12G) in multiple sclerosis and Parkinson's disease2012In: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 259, no 4, p. 729-738Article in journal (Refereed)
    Abstract [en]

    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.

  • 2.
    Bolstad, Ingeborg
    et al.
    Norge.
    Andreassen, Ole A.
    Norge.
    Groote, Inge R.
    Norge.
    Haatveit, Beathe
    Norge.
    Server, Andres
    Norge.
    Jensen, Jimmy
    Kristianstad University, School of Education and Environment, Avdelningen för Humanvetenskap. Norge.
    No difference in frontal cortical activity during an executive functioning task after acute doses of aripiprazole and haloperidol2015In: Frontiers in Human Neuroscience, ISSN 1662-5161, E-ISSN 1662-5161, Vol. 9, article id 296Article in journal (Refereed)
    Abstract [en]

    Background: Aripiprazole is an atypical antipsychotic drug that is characterized by partial dopamine D2 receptor agonism. Its pharmacodynamic profile is proposed to be beneficial in the treatment of cognitive impairment, which is prevalent in psychotic disorders. This study compared brain activation characteristics produced by aripiprazole with that of haloperidol, a typical D2 receptor antagonist, during a task targeting executive functioning.

    Methods: Healthy participants received an acute oral dose of haloperidol, aripiprazoleor placebo before performing an executive functioning task while blood-oxygen-level dependent (BOLD) functional magnetic resonance imaging (fMRI) was carried out.

    Results: There was a tendency towards reduced performance in the aripiprazole group compared to the two other groups. The image analysis yielded a strong task related BOLD-fMRI response within each group. An uncorrected between-group analysis showed that aripiprazole challenge resulted in stronger activation in the frontal and temporal gyri and the putamen compared with haloperidol challenge, but after correcting for multiple testing there was no significant group difference.

    Conclusion: No significant group differences between aripiprazole and haloperidol infrontal cortical activation were obtained when corrected for multiple comparisons.

  • 3.
    Carina, Hellqvist
    et al.
    Linköping University.
    Dizdar, Nil
    Linköping University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Berterö, Carina
    Linköping University.
    Sund-Levander, Märta
    Linköping University.
    A national Swedish self- management program for people with Parkinson’s disease: patients and relatives view2017In: Movement Disorders, 2017, Vol. 32, p. 175-176Conference paper (Refereed)
    Abstract [en]

    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

  • 4.
    Friedman, Joseph H.
    et al.
    NeuroHealth, Parkinson's Disease and Movement Disorders Center, Warwick, Rhode Island.
    Alves, Guido
    The Norwegian Centre for Movement Disorders, Stavanger University Hospital.
    Hagell, Peter
    Department of Neurology, Lund University Hospital.
    Marinus, Johan
    Department of Neurology, Leiden University Medical Center, Leiden.
    Marsh, Laura
    Department of Psychiatry Johns Hopkins Hospital, Baltimore, Maryland.
    Martinez-Martin, Pablo
    Area of Applied Epidemiology, Center for Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid.
    Goetz, Christopher G.
    Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois.
    Poewe, Werner
    Department of Neurology, Innsbruck Medical University.
    Rascol, Olivier
    Clinical Investigation Center INSERM CIC-9302 and Departments of Clinical Pharmacology and Neurosciences, CHU and University UPS of Toulouse.
    Sampaio, Cristina
    Laboratório de Farmacologia Clínica e Terapêutica e Instituto de Medicina Molecular, Faculdade de Medicina de Lisboa.
    Stebbins, Glenn
    Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois.
    Schrag, Anette
    Department of Clinical Neurosciences, Institute of Neurology, University College London.
    Fatigue rating scales critique and recommendations by the Movement Disorders Society task force on rating scales for Parkinson's disease2010In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 25, no 7, p. 805-822Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Research Platform for Collaboration for Health.
    Behandlingsmål vid Parkinson: vad är viktigt för patientens livskvalitet?2015In: Parkinsonjournalen, ISSN 1104-2435, no 2, p. 40-42Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Vilka sjukdomsaspekter är väsentligast ur patienternas perspektiv? Vilka mål ska sättas för behandlingen? Livskvalitet, gångförmåga och rörlighet är några av de faktorer som visat sig viktiga att utvärdera.

  • 6.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Is the activities of daily living (ADL) section of the unified Parkinson’s disease rating scale valid for measuring ADL in Parkinson's disease?2017Conference paper (Other academic)
    Abstract [en]

    Parkinson’s disease (PD) is a progressive neurodegenerative disorder characterized by motor as well as non-motor symptoms. While available symptomatic therapy is effective, PD is associated with increasing disability and limitations in performance of activities of daily living (ADL). Maintaining and improving activity performance is therefore a major goal in available symptomatic therapy. The most commonly used rating scale for quantification of ADL outcomes is the ADL section (part II) of the Unified PD Rating Scale (UPDRS). However, the UPDRS II does not only include activity but also impairment items. The consequences of this does not appear to have been addressed from a measurement perspective. This paper describes results from Rasch Measurement Theory analyses of complete UPDRS II (full scale, Activity and Impairment) data (n=675-687). Results show poor fit of the full UPDRS II with, e.g., disordered response thresholds, significant misfit and DIF (reliability, 0.82). The 6 Activity items showed no disordered thresholds, significant misfit or DIF (reliability, 0.86), whereas Impairment items did (reliability, 0.51). In conclusion, dividing the UPDRS II into two scales improves ADL measurement, but alternative approaches are needed and the UPDRS II cannot be recommended for measuring ADL in PD as it may yield misleading outcomes.

  • 7.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Nursing and multidisciplinary interventions for Parkinson's disease: what is the evidence?2007In: Parkinsonism & Related Disorders, ISSN 1353-8020, E-ISSN 1873-5126, Vol. 13, no Suppl.3, p. S501-S508Article in journal (Refereed)
    Abstract [en]

    This paper reports the interim results of an ongoing systematic review of the available evidence for the effectiveness of nursing care for people with Parkinson's disease (PD). Five clinical and four health-economic evaluations suggest that the clinical and cost effectiveness of nursing care for PD remain inconclusive. This is in contrast to clinical experience and may be due to issues related to study designs, study interventions, and the outcome measures used. More studies are needed and may benefit from considering specific interventions evaluated using outcome measures that are valid and responsive representations of their expected outcomes.

  • 8.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Role of the unified Parkinson’s disease rating scale as a tool for measuring clinical motor outcomes in Parkinson's disease2017Conference paper (Other academic)
    Abstract [en]

    Parkinson’s disease (PD) is a neurodegenerative disorder characterized by motor symptoms such as bradykinesia, rigidity, tremor and postural instability. Available therapy is symptomatic, although several approaches have been investigated as potential disease-modifying therapies. Clinical trial outcomes are typically measured by means of rating scales, of which the Unified PD Rating Scale (UPDRS) is the most commonly used, particularly part III, its motor examination section. Despite its central role, the UPDRS has not been examined regarding its role as a measurement instrument. This paper describes results from an analysis according to Rasch Measurement Theory (RMT) of 804 complete clinical UPDRS III assessments. Results show that the scale exhibits mistargeting, with the vast majority of people being located at the lower half (i.e., less severe symptoms) of its measurement range. Furthermore, evidence suggests multidimensionality as well as redundancy, and problems with the empirical functioning of rating scale categories. It is concluded that the UPDRS represents a clinical assessment tool rather than a measurement instrument, which may contribute to a range of missed opportunities regarding therapeutic developments as well as understanding of the disease itself. Potential remedies include separation into symptom specific scales and reconceptualization in order to expand its range of measurement.

  • 9.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Broman, Jan-Erik
    Department of Neuroscience, Psychiatry, Uppsala University.
    Measurement properties and hierarchical item structure of the Epworth Sleepiness Scale in Parkinson's disease2007In: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869, Vol. 16, no 1, p. 102-109Article in journal (Refereed)
    Abstract [en]

    The aim of this work was to evaluate the measurement properties and hierarchical item structure of the Epworth Sleepiness Scale (ESS) in patients with Parkinson's disease (PD). Data were taken from a cross-sectional study regarding fatigue and sleep-related aspects of PD. One hundred and eighteen consecutive patients with neurologist-diagnosed PD without significant co-morbidities (54% men; mean age, 64 years; mean PD duration, 8.4 years) from four Swedish neurological outpatient clinics participated. The ESS displayed good data quality with few missing items (0-2.5%): good reliability (Cronbach's alpha, 0.84), marginal floor and no ceiling effects (1.7% and 0% respectively), and differentiated between those reporting problems staying awake during the past month and those who did not. Item-total correlations, factor and Rasch analyses indicated that items tap a single underlying construct. Rasch analysis supported basic rating scale assumptions and demonstrated an item hierarchy similar to that previously found in patients with other sleep disorders. Gaps in the levels of sleep propensity covered by ESS items and their response options were identified at the higher and lower ends of the underlying sleepiness continuum. This study provides an evidence base for using the ESS in PD by demonstrating good psychometric properties and a stable hierarchical item structure. However, addition of new items and use of Rasch scoring has potential to further enhance the clinical usefulness of the ESS.

  • 10.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Brundin, L.
    Department of Clinical Sciences, Section of Psychiatry, Lund University.
    Towards an understanding of fatigue in Parkinson disease2009In: Journal of Neurology, Neurosurgery and Psychiatry, ISSN 0022-3050, E-ISSN 1468-330X, Vol. 80, no 5, p. 489-492Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To gain an improved understanding of fatigue in Parkinson disease (PD) by exploring possible predictors among a wide range of motor and non-motor aspects of PD.

    METHODS: 118 consecutive PD patients (54% men; mean age 64 years) were assessed regarding fatigue, demographics and a range of non-motor and motor symptoms. Variables significantly associated with fatigue scores in bivariate analyses were used in multiple regression analyses with fatigue as the dependent variable.

    RESULTS: Fatigue was associated with increasing Hoehn & Yahr stages, specifically the transition from stages I-II to stages III-V. Regression analysis identified five significant independent variables explaining 48% of the variance in fatigue scores: anxiety, depression, lack of motivation, Unified PD Rating Scale (UPDRS) motor score and pain. Gender, age, body mass index, PD duration, motor fluctuations, dyskinesias, symptomatic orthostatism, thought disorder, cognition, drug treatment, sleep quality and daytime sleepiness were not significantly associated with fatigue scores. When considering individual motor symptom clusters instead of the UPDRS motor score, only axial/postural/gait impairment was associated with fatigue.

    CONCLUSIONS: This study found fatigue to be primarily associated with symptoms of depression and anxiety, and with compromised motivation, parkinsonism (particularly axial/postural/gait impairment) and pain. These results are in agreement with findings in other disorders and imply that fatigue should be considered a separate PD entity differing from, for example, excessive daytime sleepiness. Fatigue may have a distinguished neurobiological background, possibly related to neuroinflammatory mechanisms. This implies that novel treatment options, including anti-inflammatory therapies, could be effective.

  • 11.
    Hagell, Peter
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hariz, Gun-Marie
    Umeå University.
    Sandlund, Birgitta
    Skåne University Hospital.
    Direct dopaminergic responsiveness of activity performance2017In: Movement Disorders, 2017, Vol. 32, p. 460-460Conference paper (Other academic)
    Abstract [en]

    Objective: To assess the direct dopaminergic responsiveness of motor and process aspects of activity performance in people with parkinsonian disorders, and to compare this to the symptomatic motor response. 

    Background: Parkinsonian disorders are associated with limitations in daily activity performance. However, while the dopaminergic responsiveness of motor symptoms is well established, the direct dopaminergic responsiveness of aspects of activity performance appears unaddressed since assessments of activity performance typically are retrospective. This is a limitation since impairment (symptoms and signs) is a separate construct from activity limitations, and the latter is not only related to the former. 

    Methods: Twenty-seven people with parkinsonian disorders (18 men; mean age and disease duration, 68 and 8 years, respectively) underwent a clinical dopaminergic drug response test (median (range) L-dopa dose, 150 (100-300) mg) following 12 hours of dopaminergic drug withdrawal. Participants were tested according to the Unified PD Rating Scale (UPDRS) motor examination and the Assessment of Motor and Process Skills (AMPS) scale in the defined ”off” and best ”on” states. Similar to the UPDRS motor examination, AMPS ratings are based on direct observations of activity performance. Average ”off”, ”on” and change scores were compared, and magnitudes of responsiveness were estimated using Cohen’s dzeffect size (ES). Correlations between outcomes were also computed. 

    Results: Motor symptoms (mean UPDRS motor scores) improved from 36.2 in the defined “off” to 22.5 in the best “on” state, representing an ES of 0.74. Mean AMPS motor scores improved from 1.46 (defined “off”) to 2.34 (best “on”) and mean process scores improved from 1.37 to 1.85, representing ESs of 1.13 (motor) and 0.79 (process). Absolute correlations between UPDRS motor scores and AMPS motor/process scores ranged between 0.40-0.61 for defined “off”, best “on” and change scores.

    Conclusions: The dopaminergic responsiveness was more pronounced for activity performance than for motor symptoms, although motor symptom responsiveness was similar to that of process aspects of activity performance. Correlations suggest that symptomatic motor response is a relatively weak predictor of daily activity performance. These observations argue for the need to specifically address activity performance outcomes in clinical studies.

  • 12.
    Hagell, Peter
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Höglund, Arja
    Karolinska University Hospital.
    Hellqvist, Carina
    Linköping University Hospital.
    Johansson, Eva-Lena
    Karlstad Central Hospital.
    Löwed, Berit
    Karlstad Central Hospital.
    Sjöström, Ann-Christine
    Sahlgrenska University Hospital.
    Karlberg, Carina
    Sahlgrenska University Hospital.
    Lundgren, Maragreth
    Karolinska University Hospital.
    Dizdar, Nil
    Linköping University Hospital.
    Johansson, Anders
    Karolinska University Hospital.
    Willows, Thomas
    Karolinska University Hospital.
    Rådberg, Johan
    Karlstad Central Hospital.
    Bergquist, Filip
    Sahlgrenska University Hospital.
    Apomorphine formulation influences subcutaneous complications in continuous apomorphine pump therapy for Parkinson’s disease2017In: Movement Disorders, 2017Conference paper (Other academic)
    Abstract [en]

    Objective: To explore if the occurrence and severity of subcutaneous (sc) nodules is influenced by the pharmaceutical formulation of apomorphine used for sc infusion in advanced Parkinson’s disease (PD).

    Background: Apomorphine infusion is an effective therapy in advanced PD, but a limitation is troublesome sc nodules. Various chemically non-identical apomorphine formulations are available. Anecdotal clinical experience has suggested that shifting from one of these (Apo-Go PumpFill; apoGPF) to another (Apomorphine PharmSwed; apoPS, developed in Sweden) may influence the occurrence and severity of sc nodules.

    Methods: In this multicenter open-label prospective observational study, 15 people with advanced PD (mean PD- duration, 13.4 years; median Hoehn & Yahr, IV) on apoGPF since a mean of 2.1 years and with troublesome sc nodules were switched to apoPS. Ongoing interventions to treat existing nodules (ultrasound, massage, Hirudoid cream) continued, and apomorphine as well as other drugs was managed according to clinical routines. Data were collected between May 2015 and March 2017; at baseline, at the time of switching (about 2 weeks later), and up to 1.7-4.2 (mean, 2.5) months post-switch follow-up. Primary outcomes were total nodule numbers, size (mm diameter for the 5 worst nodules), consistency (scored 0-3 for the 5 worst nodules), and associated skin changes (scored 0-4 for the 5 worst nodules) and pain (scored 0-5). Patients also rated their perceived PD severity and motor complications (UPDRS IV). Patient preferences 5-12 months post-switch (2-9 months after follow-up) were also recorded.

    Results: Apomorphine and L-dopa doses did not change over the observation period (P≥0.400). Baseline nodule numbers (7.4 vs. 4.6; P<0.003), size (92.9 vs. 54.1 mm; P=0.016), consistency (11 vs. 5; P=0.003), skin changes (3 vs. 1.5; P=0.205), and average pain (1 vs. 0; P=0.020) improved 11 weeks post-switch. Patient-reported PD severity (P=0.020) and motor fluctuations improved (P=0.051), whereas dyskinesias tended to increase (P=0.205). At 5-12 months post-switch, 13 patients had decided to remain on apoPS; mainly due to improved nodules.

    Conclusions: These observations suggest that apoPS may have a better safety profile compared to apoGPF in terms of sc nodule occurrence and severity. There is a need for larger, randomized controlled studies for firmer conclusions.

  • 13.
    Hagell, Peter
    et al.
    Department of Nursing, Lund University.
    McKenna, Stephen P.
    Galen Research, Manchester.
    International use of health status questionnaires in Parkinson's disease: translation is not enough2003In: Parkinsonism & Related Disorders, ISSN 1353-8020, E-ISSN 1873-5126, Vol. 10, no 2, p. 89-92Article in journal (Refereed)
    Abstract [en]

    The present study assessed the linguistic and content validity of the Swedish version of the 39-item Parkinson's disease questionnaire (PDQ-39). The frame question, response alternatives and two of the 39 items yielded substantial linguistic and stylistic problems. Such shortcomings would be expected to influence responses to, and the quality of, the whole questionnaire. Data support content validity of the PDQ-39 as a functional health status questionnaire, although some shortcomings were identified. This preliminary study illustrates the need for documented linguistic validity before new language adaptations of patient-reported outcome measures can be considered suitable for use in clinical trials, research, and practice.

  • 14.
    Hagell, Peter
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Nilsson, Maria
    Lund University.
    Chaudhuri, Ray
    England.
    Odin, Per
    Lund University.
    The non-motor symptoms questionnaire and non-motor symptoms scale for use in Sweden2017In: Movement Disorders, 2017, Vol. 32, p. 74-74Conference paper (Other academic)
    Abstract [en]

    Objective: To translate the Non-Motor Symptoms Questionnaire (NMSQ) and the Non-Motor Symptoms Scale (NMSS) into Swedish, and test their linguistic validity and user-friendliness.

    Background: Non-motor symptoms (NMS) are common but under recognized among people with Parkinson’sdisease (PwPD). The NMSQ and NMSS were developed to ease NMS detection and assessment. The NMSQ is a patient-reported checklist regarding the presence of 30 NMS. The NMSS is a clinician-administered interview based rating scale regarding the frequency and severity of 30 NMS. Both are widely used, but Swedish versions have been lacking.

    Methods: The English NMSQ and NMSS were translated into Swedish in two stages. First, Swedish translations were produced by a professional translator and 3 bilingual PD-clinicians. Second, translations were reviewed by 3 independent PD-clinicians, resulting in minor revisions. The subsequent Swedish versions were then field-tested by 4 PD-clinicians on 5 PwPD each (n=20; 15 men; mean age and PD duration 67.6 and 9 years; HY stages II-IV). Evaluations included user burden (completion time), content relevance, and easiness to understand and use.

    Results: PwPD completed the NMSQ in a mean (range) of 4.8 (2-8) minutes. NMSQ content was considered relevant by 19 PwPD; 19 found instructions easy to understand and 17 found items easy to understand and respond to. The NMSS was completed in 13 (8-25) minutes. All 4 clinicians considered NMSS contents as relevant and instructions easy to understand; 1 considered items easy to rate. Two clinicians reported NMSS items as easy to understand for PwPD, and 1 clinician reported items as easy to answer for PwPD. Two clinicians considered theNMSS “very much” or “moderately”, and 2 considered it “a little” useful for clinical research. One clinician considered the NMSS “moderately”, and 3 considered it “a little” useful for clinical practice, but none would use it themselves. Translators, reviewers and field-test clinicians highlighted ambiguities with the NMSS not related to the translation.

    Conclusions: The NMSQ and NMSS were translated into Swedish and the linguistic validity of both translations was supported. There was also support for the user-friendliness of the NMSQ, but not for the NMSS. Issues detected with the NMSS do not appear to be specific for the Swedish version. Further evaluations of the NMSS in larger samples are needed.

  • 15.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Nilsson, Maria H.
    Department of Health Sciences, Lund University.
    The 39-Item Parkinson's Disease Questionnaire (PDQ-39): is it a unidimensional construct?2009In: Therapeutic advances in neurological disorders, ISSN 1756-2856, Vol. 2, no 4, p. 205-214Article in journal (Refereed)
    Abstract [en]

    The 39-item Parkinson's Disease Questionnaire, and particularly its summary index (PDQ-39SI) is a widely used patient-reported clinical trial endpoint. A basic assumption when summing items into a total score is that they represent a common variable. We therefore assessed the unidimensionality of the PDQ-39SI using Rasch and confirmatory factor analysis. Both analyses showed model misfit. Adjustment for differential item functioning and disordered response category thresholds did not improve model fit, and residual analyses showed deviation from unidimensionality. These data indicate multidimensionality and challenge the interpretation and validity of PDQ-39SI scores. Clinicians and investigators should use and interpret the PDQ-39SI with caution.

  • 16.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Nygren, Carita
    Department of Health Sciences, Lund University.
    The 39 item Parkinson's disease questionnaire (PDQ-39) revisited: implications for evidence based medicine2007In: Journal of Neurology, Neurosurgery and Psychiatry, ISSN 0022-3050, E-ISSN 1468-330X, Vol. 78, no 11, p. 1191-1198Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The 39 item Parkinson's disease questionnaire (PDQ-39) is the most widely used patient reported rating scale in Parkinson's disease. However, several fundamental measurement assumptions necessary for confident use and interpretation of the eight PDQ-39 scales have not been fully addressed.

    METHODS: Postal survey PDQ-39 data from 202 people with Parkinson's disease (54% men; mean age 70 years) were analysed regarding psychometric properties using traditional and Rasch measurement methods.

    RESULTS: Data quality was good (mean missing item responses, 2%) and there was general support for the legitimacy of summing items within scales without weighting or standardisation. Score reliabilities were adequate (Cronbach's alpha 0.72-0.95; test-retest 0.76-0.93). The validity of the current grouping of items into scales was not supported by scaling success rates (mean 56.2%), or factor and Rasch analyses. All scales represented more health problems than that experienced by the sample (mean floor effect 15%) and showed compromised score precision towards the less severe end.

    CONCLUSIONS: Our results provide general support for the acceptability and reliability of the PDQ-39. However, they also demonstrate limitations that have implications for the use of the PDQ-39 in clinical research. The grouping of items into scales appears overly complex and the meaning of scale scores is unclear, which hampers their interpretation. Suboptimal targeting limits measurement precision and, therefore, probably also responsiveness. These observations have implications for the role of the PDQ-39 in clinical trials and evidence based medicine. PDQ-39 derived endpoints should be interpreted and selected cautiously, particularly regarding small but clinically important effects among people with less severe problems.

  • 17.
    Hagell, Peter
    et al.
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Odin, Per
    Department of Neurology, Skåne University Hospital, Lund, Sweden.
    Apomorphine in Parkinson’s disease: 3rd edition2014 (ed. 3)Book (Other academic)
  • 18.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Rosblom, Tomas
    Department of Neurology, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    Pålhagen, Sven
    Department of Neurology, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    A Swedish version of the 16-item Parkinson Fatigue Scale (PFS-16)2012In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 125, no 4, p. 288-292Article in journal (Refereed)
    Abstract [en]

    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.

  • 19.
    Hagell, Peter
    et al.
    Lund University.
    Törnqvist, A. L.
    University Hospital, Lund.
    Hobart, J.
    Peninsula Medical School, Plymouth.
    Testing the SF-36 in Parkinson's disease. Implications for reporting rating scale data2008In: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 255, no 2, p. 246-254Article in journal (Refereed)
    Abstract [en]

    Rating scales are increasingly the primary outcome measures in clinical trials. However, clinically meaningful interpretation of such outcomes requires that the scales used satisfy basic requirements (scaling assumptions) within the data. These are rarely tested. The SF-36 is the most widely used patient-reported rating scale. Its scaling assumptions have been challenged in neurological disorders but remain untested in Parkinson's disease (PD). We therefore tested these by analyzing SF-36 data from 202 PD patients (54% men; mean age 70) to determine if it was legitimate to report scores for the eight SF-36 scales and its two summary measures of physical and mental health, and if those scores were reliable and valid. Results supported generation of the eight SF-36 scale scores and their reliabilities were generally good (> or = 0.74 in all but one instance). However, we found limitations that question the meaningfulness of four scales and other limitations that restrict the ability of four scales to detect change in clinical trials (floor/ceiling effects, 19.6-46.2 %). The two SF-36 summary measures were not found to be valid indicators of physical and mental health. This study demonstrates important limitations of the SF-36 and provides the first evidence-based guidelines for its use in PD. The limitations of the SF-36 demonstrated here may explain some unexpected findings in previous studies. However, the main implication is a general one for the clinical research community regarding requirements for reporting rating scale endpoints. Specifically, investigators should routinely provide scale evaluations based on data from within major clinical trials.

  • 20.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Westergren, Albert
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Measurement properties of the SF-12 Health Survey in Parkinson's disease2011In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 1, no 2, p. 185-196Article in journal (Refereed)
    Abstract [en]

    The 12-item Short-Form Health Survey (SF-12) is an abbreviated version of the SF-36, one of the most widely used patient-reported health outcome rating scales. Similar to the SF-36, it yields summary scores of physical and mental health (PCS and MCS, respectively). However, SF-36 derived PCS and MCS scores have not been found valid in neurological disorders such as Parkinson's disease (PD). Here we used modern psychometric methodology (Rasch analysis) to test the SF-12 in PD, and explored the appropriateness of a total SF-12 score representing overall health. SF-12 data from 150 non-demented people with PD (56% men; mean age/PD-duration, 70/5 years) were analyzed regarding Rasch model fit for the PCS, MCS, as well as for the full SF-12. Data showed some signs of misfit to the Rasch model for all three scales (overall item-trait interaction, P ≥ 0.003; reliability, ≥ 0.85). For example, all scales exhibited signs of dependency between item responses, and the PCS measured with relatively low precision. Model fit (but not measurement precision) was improved following deletion of one PCS and one MCS item (overall item-trait interaction, P ≥ 0.387; reliability, ≥ 0.82). These observations suggest that the SF-12 can be used as a coarse health survey tool in PD and that a total SF-12 may be useful as a measure of overall health. However, its appropriateness as an outcome measure can be questioned and it is somewhat unclear exactly what the derived scores represent. As such, the SF-12 should probably be considered an assessment tool (or index) rather than a measurement instrument.

  • 21.
    Hagell, Peter
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Westergren, Albert
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Hariz, Gun-Marie
    Umeå University.
    Hobart, Jeremy
    England.
    Wictorin, Klas
    Lund University.
    Measuring the impact of drug-induced dyskinesias in Parkinson’s disease: the PDYS-26 revisited2018In: International Conference on Probabilistic Models for Measurement, 2018Conference paper (Other academic)
    Abstract [en]

    BACKGROUND: Drug-induced dyskinesias (DID) are a common long-term complication of dopaminergic drug therapy for Parkinson’s disease (PD). The 26-item PD dyskinesia scale (PDYS-26) is a patient-reported rating scale intended to quantify the everyday impact of DID. However, its measurement properties have not been scrutinized since its development some 10 years ago.

    AIM: To examine the measurement properties of the PDYS-26 using Rasch Measurement Theory (RMT).

    DESIGN: The PDYS-26 was administered to people with PD and varying degrees of DID recruited from six Swedish (n=172) and three British (n=150) outpatient movement disorder clinics. RMT analyses were conducted using the RUMM2030 software.

    RESULTS: RMT model fit was generally good with only three items exhibiting relatively minor misfit. Response categories worked as intended and targeting was acceptable and reliability was 0.96. There was no differential item functioning (DIF) by age, PD duration or time, but three items exhibited DIF by country and one by sex, neither of which appear to notably bias person measurement. Item hierarchy review suggested a variable of dubious clinical/theoretical coherence. Therefore, a recently proposed three-dimensional reduced (21-item) PDYS version was explored. Results were similar to those from the original scale but with improved conceptual coherence, albeit with close to a 2- to 3-fold decrease in measurement precision. 

    SUMMARY AND IMPLICATIONS: The PDYS-26 appears useful for measuring the impact of DID, and yields sufficiently invariant measurement across core patient subgroups. Scale reconceptualization improves the meaning of scores, but at the cost of measurement uncertainty.

  • 22.
    Hagell, Peter
    et al.
    Section of Restorative Neurology, Department of Clinical Neuroscience, University Hospital, Lund.
    Whalley, Diane
    Galen Research, Manchester.
    McKenna, Stephen P
    Galen Research, Manchester.
    Lindvall, Olle
    Section of Restorative Neurology, Department of Clinical Neuroscience, University Hospital, Lund.
    Health status measurement in Parkinson's disease: validity of the PDQ-39 and Nottingham Health Profile2003In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 18, no 7, p. 773-783Article in journal (Refereed)
    Abstract [en]

    We assessed the feasibility and psychometric properties of two commonly used health status questionnaires in Parkinson's disease (PD): the generic Nottingham Health Profile (NHP) and the disease-specific 39-item Parkinson's disease Questionnaire (PDQ-39), from a cross-sectional postal survey of PD patients (N = 81), using traditional and Rasch measurement methodologies. Overall response rate was 88%. Both questionnaires were found feasible, although the NHP performed less well. The PDQ-39 had fewer floor effects and was better able to separate respondents into distinct groups than the NHP, whereas the latter exhibited less ambiguous dimensionality and better targeting of respondents with non-extreme scores. Reliability and validity indices were similar, and potential differential item functioning by age and gender groups was found for both questionnaires. PDQ-39 response alternatives indicated ambiguity. With few exceptions, questionnaire scales were unable to meet recommended standards fully. While preliminary, this study illustrates the need for thorough evaluation of outcome measures and has implications beyond the questionnaires used here. Although promising, both questionnaires warrant further developmental work and stronger support of measurement validity before they could be considered fully suitable for valid use in PD, in particular in earlier stages of the disease.

  • 23.
    Hjelmgren, Jonas
    et al.
    The Swedish Institute for Health Economics, Lund.
    Ghatnekar, Ola
    The Swedish Institute for Health Economics, Lund.
    Reimer, Jan
    Section of Restorative Neurology, Wallenberg Neuroscience Center, University Hospital, Lund.
    Grabowski, Martin
    Section of Restorative Neurology, Wallenberg Neuroscience Center, University Hospital, Lund.
    Lindvall, Olle
    Section of Restorative Neurology, Wallenberg Neuroscience Center, University Hospital, Lund.
    Persson, Ulf
    The Swedish Institute for Health Economics, Lund.
    Hagell, Peter
    Section of Restorative Neurology, Wallenberg Neuroscience Center, University Hospital, Lund.
    Estimating the value of novel interventions for Parkinson's disease: an early decision-making model with application to dopamine cell replacement2006In: Parkinsonism & Related Disorders, ISSN 1353-8020, E-ISSN 1873-5126, Vol. 12, no 7, p. 443-452Article in journal (Refereed)
    Abstract [en]

    A long-term cost-effectiveness model for early decision-making and estimation of outcomes of novel therapeutic procedures for Parkinson's disease (PD) was developed based on the Hoehn and Yahr (HY) stages of PD. Results provided support for model validity. Model application to a future dopamine cell replacement therapy indicated long-term cost offsets and gains in quality-adjusted life years (QALYs) in early onset PD (HY III-IV), as compared to standard drug therapy. The maximum price premium (i.e., profit or compensation for developmental costs) for the intervention to remain cost-effective was estimated to euro12000-64000 according to cost-per-QALY thresholds of euro38000-70000 and depending on whether all or only medical direct costs are considered. The study illustrates the value of early health economic modeling and the described model shows promise as a means to estimate outcomes and aid decision-making regarding novel interventions for PD.

  • 24.
    Hubel, Marie
    et al.
    Department of Health Sciences, Faculty of Medicine, Lund University.
    Hagell, Peter
    Department of Health Sciences, Faculty of Medicine, Lund University.
    Sivberg, Bengt
    Department of Health Sciences, Faculty of Medicine, Lund University.
    Brief report: development and initial testing of a questionnaire version of the Environmental Rating Scale (ERS) for assessment of residential programs for individuals with autism2008In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432, Vol. 38, no 6, p. 1178-1183Article in journal (Refereed)
    Abstract [en]

    There is a lack of validated autism-specific outcome measures for large-scale evaluation of the effectiveness of psycho-educational programmes. To fill this gap the Environment Rating Scale (ERS) was adapted from an interview version to a staff-completed questionnaire version (ERS-Q). The ERS-Q was tested regarding data quality, validity, reliability and ease of understanding amongst 18 residential staff members. The ERS-Q and ERS showed comparable reliability (alpha = 0.89 and 0.93, respectively) and their correlation was 0.73. These observations support that the ERS interview can be adapted into a questionnaire without substantial loss of conceptual meaning. However, further evaluations in larger samples are needed to more firmly evaluate the measurement properties.

  • 25.
    Hubel, Marie
    et al.
    Department of Health Sciences, Faculty of Medicine , Lund University.
    Hagell, Peter
    Department of Health Sciences, Faculty of Medicine , Lund University.
    Sivberg, Bengt
    Department of Health Sciences, Faculty of Medicine , Lund University.
    Psychometric properties of the questionnaire version (ERS-Q) of the Environmental Rating Scale (ERS) for assessment of residential programmes for individuals with autism2010In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 12, no 4, p. 245-256Article in journal (Refereed)
    Abstract [en]

    The Environmental Rating Scale (ERS) is the only autism spectrum disorders (ASD) specific tool for assessment of residential services and treatment models. However, one limitation with the ERS is its dependence on expert observations and interviews, particularly in larger scale studies. The ERS has therefore been adapted into a staff self-report questionnaire (ERS-Q). Here the measurement properties of the ERS-Q were examined according to traditional test theory criteria. Data provided support for summation of raw item scores into total and subscale ERS-Q scores and item-total correlations indicated that items within scales tap a common construct, suggesting that the ERS-Q is useful in survey as well as interventional studies. As such the ERS-Q appears a valuable addition to the current ASD research toolbox. The Environmental Rating Scale (ERS) is the only autism spectrum disorders (ASD) specific tool for assessment of residential services and treatment models. However, one limitation with the ERS is its dependence on expert observations and interviews, particularly in larger scale studies. The ERS has therefore been adapted into a staff self-report questionnaire (ERS-Q). Here the measurement properties of the ERS-Q were examined according to traditional test theory criteria. Data provided support for summation of raw item scores into total and subscale ERS-Q scores and item-total correlations indicated that items within scales tap a common construct, suggesting that the ERS-Q is useful in survey as well as interventional studies. As such the ERS-Q appears a valuable addition to the current ASD research toolbox.

  • 26.
    Höglund, Arja
    et al.
    Karolinska Institutet.
    Broman, JanErik
    Uppsala University.
    Pålhagen, Sven
    Karolinska Institutet.
    Fredrikson, Sten
    Karolinska Institutet.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Excessive Daytime Sleepiness in Parkinson’s Disease – relationship to motor and non-motor symptoms2014Conference paper (Refereed)
    Abstract [en]

    Objective: To investigate potential predictors of Excessive daytime sleepiness (EDS) in Parkinson’s disease (PD), and explore how EDS relates to other motor and non-motor PD features.

    Background: EDS is common in Parkinson’s disease, but its role and relation to other PD features is less well understood.

    Methods: 118 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.

    Results: Among 114 persons with complete ESS data, significant independent associations were found between ESS scores and axial/postural/gait impairment, depressive symptoms, and pain (R2, 0.199). ESS scores did not load significantly together with any other PD features in the PCA.

    Conclusions: Only 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 e.g. poor sleep quality and fatigue.

  • 27.
    Johansson, Maurits
    et al.
    Clinical Memory Research Unit, Clinical Sciences Malmö, Lund University, Malmö, Sweden.
    Johansson, Per
    Clinical Sciences Lund/Helsingborg, Lund University, Helsingborg, Sweden.
    Stomrud, Erik
    Clinical Memory Research Unit, Clinical Sciences Malmö, Lund University, Malmö, Sweden.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Hansson, Oskar
    Clinical Memory Research Unit, Clinical Sciences Malmö, Lund University, Malmö, Sweden.
    Psychometric testing of a Swedish version of the Apathy Evaluation Scale in three clinical cohorts2017Conference paper (Refereed)
  • 28.
    Kim, M.-Y.
    et al.
    Department of Health Sciences, Lund University.
    Dahlberg, A.
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Respondent burden and patient-perceived validity of the PDQ-392006In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 113, no 2, p. 132-137Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To evaluate the respondent burden and patient-perceived content validity of the Parkinson's disease (PD)-specific health status questionnaire PDQ-39, and the linguistic validity of its revised Swedish version.

    MATERIALS AND METHODS: Eighteen PD patients completed the revised Swedish version of the PDQ-39. Respondent burden was assessed by recording the time taken to complete the questionnaire. Content and linguistic validity was evaluated qualitatively.

    RESULTS: Patients with mild, moderate and advanced PD needed a mean time of 9.5, 11.3 and 20.1 min, respectively, to complete the PDQ-39. One-third of the patients identified irrelevant items and 50% identified important health-related areas that were missing. Revisions had eliminated previous linguistic problems with the Swedish PDQ-39.

    CONCLUSIONS: Undue respondent burden challenged the appropriateness of the PDQ-39 among patients with more advanced disease. Overall content validity was acceptable but compromised by lack of important content areas. Observations supported the linguistic validity of the revised Swedish PDQ-39.

  • 29.
    Knutsson, I.
    et al.
    Department of Health Sciences, Lund University.
    Samuelson, K..
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Stability of rating scale response category interpretations in neurological disorders2013In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 128, no 4, p. 265-272Article in journal (Refereed)
    Abstract [en]

    Objectives Unambiguous use and interpretation of rating scale data assume that response categories are interpreted and work as intended. This study investigated the stability of interpretations of commonly used patient-reported rating scale response categories among people with neurological disorders. Materials and methods Forty-six people with neurological disorders (26 men; mean age, 57; Parkinson's disease, 50%; multiple sclerosis, 41%) indicated their interpretation of 21 response categories (representing frequencies, intensities and levels of agreement) on 100-mm visual analog scales (VAS) at two occasions, ≥2 weeks apart. Data were analyzed using intraclass correlation and weighted Kappa (ICC/Κw; should be >0.4), mean/median differences, percentages agreement (PA), and the standard error of measurement (SEM). Results Most response categories had ICC/Κw values <0.4. The overall average ICC/Κw was 0.279/0.294 (frequencies, 0.224/0.255; intensities, 0.265/0.251; levels of agreement, 0.362/0.376). The mean/median difference between time points across all 21 categories was 0.43/0.5 mm (mean/median absolute difference, 3.36/9 mm). The overall average PA and SEM were 6.5% and 16.1 mm, respectively. Conclusions Stabilities in interpretations of patient-reported rating scale response categories among people with neurological disorders were generally low. Categories expressing levels of agreement showed best results, suggesting that these may be preferable when appropriate with respect to the scale and its items. Future studies should consider response category interpretations in relation to various contexts. These observations suggest caution when interpreting raw rating scale data and argue for the use of modern rating scale methodologies such as the Rasch measurement model.

  • 30.
    Knutsson, Ida
    et al.
    Department of Health Sciences, Lund University.
    Rydström, Helena
    Department of Health Sciences, Lund University.
    Reimer, Jan
    Nyberg, Per
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Interpretation of response categories in patient-reported rating scales: a controlled study among people with Parkinson's disease2010In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 8, p. 61-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Unambiguous interpretation of ordered rating scale response categories requires distinct meanings of category labels. Also, summation of item responses into total scores assumes equal intervals between categories. While studies have identified problems with rating scale response category functioning there is a paucity of empirical studies regarding how respondents interpret response categories. We investigated the interpretation of commonly used rating scale response categories and attempted to identify distinct and roughly equally spaced response categories for patient-reported rating scales in Parkinson's disease (PD) and age-matched control subjects.

    METHODS: Twenty-one rating scale response categories representing frequency, intensity and level of agreement were presented in random order to 51 people with PD (36 men; mean age, 66 years) and 36 age-matched controls (14 men; mean age, 66). Respondents indicated their interpretation of each category on 100-mm visual analog scales (VAS) anchored by Never--Always, Not at all--Extremely, and Totally disagree--Completely agree. VAS values were compared between groups, and response categories with mean values and non-overlapping 95% CIs corresponding to equally spaced locations on the VAS line were sought to identify the best options for three-, four-, five-, and six-category scales.

    RESULTS: VAS values did not differ between the PD and control samples (P = 0.286) or according to educational level (P = 0.220), age (P = 0.220), self-reported physical functioning (P = 0.501) and mental health (P = 0.238), or (for the PD sample) PD duration (P = 0.213) or presence of dyskinesias (P = 0.212). Attempts to identify roughly equally spaced response categories for three-, four-, five-, and six-category scales were unsuccessful, as the 95% CIs of one or several of the identified response categories failed to include the criterion values for equal distances.

    CONCLUSIONS: This study offers an evidence base for selecting more interpretable patient-reported rating scale response categories. However, problems associated with raw rating scale data, primarily related to their ordinal structure also became apparent. This argues for the application of methodologies such as Rasch measurement. Rating scale response categories need to be treated with rigour in the construction and analysis of rating scales.

  • 31. Li, Jia-Yi
    et al.
    Englund, Elisabet
    Holton, Janice L.
    Soulet, Denis
    Hagell, Peter
    University Hospital, Lund.
    Lees, Andrew J.
    Lashley, Tammaryn
    Quinn, Niall P
    Rehncrona, Stig
    Björklund, Anders
    Widner, Håkan
    Revesz, Tamas
    Lindvall, Olle
    Brundin, Patrik
    Lewy bodies in grafted neurons in subjects with Parkinson's disease suggest host-to-graft disease propagation2008In: Nature medicine, ISSN 1546-170X, Vol. 14, no 5, p. 501-503Article in journal (Refereed)
    Abstract [en]

    Two subjects with Parkinson's disease who had long-term survival of transplanted fetal mesencephalic dopaminergic neurons (11-16 years) developed alpha-synuclein-positive Lewy bodies in grafted neurons. Our observation has key implications for understanding Parkinson's pathogenesis by providing the first evidence, to our knowledge, that the disease can propagate from host to graft cells. However, available data suggest that the majority of grafted cells are functionally unimpaired after a decade, and recipients can still experience long-term symptomatic relief.

  • 32.
    Lindholm, Beata
    et al.
    Skåne University Hospital, Malmö.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Forskningsplattformen Hälsa i samverkan.
    Hansson, Oskar
    Lund University.
    Nilsson, Maria H.
    Lund University.
    Factors associated with fear of falling in people with Parkinson’s disease2014In: BMC Neurology, ISSN 1471-2377, E-ISSN 1471-2377, Vol. 14, p. 19-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    This study aimed to comprehensibly investigate potential contributing factors to fear of falling (FOF) among people with idiopathic Parkinson's disease (PD).

    METHODS:

    The study included 104 people with PD. Mean (SD) age and PD-duration were 68 (9.4) and 5 (4.2) years, respectively, and the participants' PD-symptoms were relatively mild. FOF (the dependent variable) was investigated with the Swedish version of the Falls Efficacy Scale, i.e. FES(S). The first multiple linear regression model replicated a previous study and independent variables targeted: walking difficulties in daily life; freezing of gait; dyskinesia; fatigue; need of help in daily activities; age; PD-duration; history of falls/near falls and pain. Model II included also the following clinically assessed variables: motor symptoms, cognitive functions, gait speed, dual-task difficulties and functional balance performance as well as reactive postural responses.

    RESULTS:

    Both regression models showed that the strongest contributing factor to FOF was walking difficulties, i.e. explaining 60% and 64% of the variance in FOF-scores, respectively. Other significant independent variables in both models were needing help from others in daily activities and fatigue. Functional balance was the only clinical variable contributing additional significant information to model I, increasing the explained variance from 66% to 73%.

    CONCLUSIONS:

    The results imply that one should primarily target walking difficulties in daily life in order to reduce FOF in people mildly affected by PD. This finding applies even when considering a broad variety of aspects not previously considered in PD-studies targeting FOF. Functional balance performance, dependence in daily activities, and fatigue were also independently associated with FOF, but to a lesser extent. Longitudinal studies are warranted to gain an increased understanding of predictors of FOF in PD and who is at risk of developing a FOF.

  • 33.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Duzynski, Wojciech
    Skåne University Hospital, Malmö.
    Nilsson, Maria
    Lund University, Lund.
    Future falls and/or near falls in people with Parkinson's disease: sensitivity and specificity of two retropulsion tests2013Conference paper (Refereed)
    Abstract [en]

    Objective: To investigate the sensitivity and specificity of two retropulsion tests for identifying individuals with Parkinson’s disease that will fall and/or experiencing near falls.

    Background: People with PD have an increased risk for falls and experiencing near falls. They are particularly unstable backwards, and different retropulsion tests exist. Item 30 of the Unified Parkinson’s Disease Rating Scale (UPDRS) is most common, involving an expected shoulder pull. Others advocate using an unexpected shoulder pull, e.g. the Nutt Retropulsion test (NRT).

    Methods: The study included 104 people with PD (mean age and PD-duration, 68 and 4.7 years, respectively) visiting a neurological clinic during 2006–2011. Those >80 years of age, requiring support in standing or did not understand the instructions were excluded. UPDRS and NRT assessments were conducted in the “on” condition. Participants then registered all falls and near falls by using a diary for six months. Based on this, participants were defined as “stable” (no falls/near falls) or “unstable” (1 fall / near fall). Sensitivity, specificity, positive and negative predictive values were calculated.

    Results: Mean (SD) score for UPDRS III was 14.5 (8.1). Fiftyfive (53%) participants were classified as “stable” and 49 (47%) as “unstable”. Both the NRT and item 30 (UPDRS) scores differed significantly (p = 0.003) between the groups. Mean NRT and item 30 scores were 0.18 (0.51) and 0.33 (0.61) for the “stable” group versus 0.63 (0.88) and 0.71 (0.74) for the “unstable” group. Sensitivity/specificity were 37%/87% (NRT), and 55%/75% (UPDRS item 30). Positive/negative predictive values were 72%/61% (NRT) and 66%/65% (UPDRS item 30).

    Conclusions: In this mildly affected sample, both NRT and item 30 had low sensitivity in detecting prospective falls and/or near falls over six months. Our findings speak against using either of these tests alone for this purpose and support previous recommendations of using multiple tests when targeting balance problems in people with PD.

  • 34.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Nilsson, Maria
    Lund University.
    Prediction of falls and/or near falls by using tandem gait performance in people with mild Parkinson’s disease2015Conference paper (Refereed)
    Abstract [en]

    Objective: To investigate whether tandem gait test (TG) can predict future falls and/or near falls in people with Parkinson’s disease (PD).

    Background: People with PD have balance problems and an increased risk for falls. Although TG has been considered a predictor of falls, no PD-study has controlled results for demographic and disease-specific characteristics or included near falls when investigating falls prospectively.

    Methods: The study included 141 participants with PD (mean age and PD-duration, 68 and 4 years, respectively). Those >80 years of age, requiring support in standing or did not understand the instructions were excluded. TG includes taking 10 consecutive tandem steps along a straight line without walking aids and support, with eyes open. Performance was scored as follows: no side steps=0; one or more side steps=1; unable to take 4 consecutive steps=2. If TG was abnormal ("1 side steps) during the first attempt, a second trial was allowed and the best performance was registered. Anti-Parkinsonian medications were recorded from medical records. All assessments were conducted in the “on” condition. Participants thereafter registered all falls and near falls by using a diary for six months.

    Results: Mean score for UPDRS III was 14 (SD 8.0). The median (q1-q3) daily total levodopa equivalent (LDE) dose (mg) was 400 (286-600). Sixty-three participants (45%) experienced ≥1 fall and/or near fall. The median (q1-q3) TG score was 2 (1-2) for those that experienced falls and/or near falls and 0 (0-1) for those without any incidents. Logistic regression (controlling for age, gender, UPDRS III and daily LDE dose) showed that TG score 2 (OR, 5.40; 95% CI, 1.75-16.70; P=0.003) predicted falls and/or near falls. TG score 1 was not significant (OR, 2.24; 95% CI, 0.84-5.98; P=0.109). This model correctly classified 39/63 (62%) of individuals with falls and/or near falls and 64/78 (82%) of individuals without any incidence, and accounted for 32% of the variability between groups.

    Conclusions: The results suggest that TG may be able to predict a future fall and/or near fall in people with mild PD. Further studies using larger samples are needed for firmer conclusions and establishment of additional properties in relation to other assessments.

  • 35.
    Lindholm, Beata
    et al.
    Lund University.
    Hansson, Oskar
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Nilsson, Maria
    Lund University.
    Prediction of instability in people with Parkinson's disease - clinical balance and gait tests2013Conference paper (Refereed)
    Abstract [en]

    Objective: To explore whether clinical balance and gait tests can predict instability (falls and/or near falls) in people with Parkinson’s disease (PD).

    Background: Current PD-studies suggest that multiple balance tests should be used in order to predict falls. However, few studies have included near falls when investigating falls prospectively as recommended.

    Methods: The study included 74 people with PD (mean age and PD-duration, 69 and 4.9 years, respectively) visiting a neurological clinic during 2006–2010. Those >80 years of age, requiring support in standing or did not understand the instructions were excluded. Assessments included: the Berg Balance Scale (BBS, 0–56 points), Nutt Retropulsion test (NRT, dichotomized; 0 = "normal”, 1 = “abnormal”), tandem gait test (TG, dichotomized; 0 = “normal”, 1 = “abnormal”), 10-meter walk test (fast speed, m/s), and Timed Up & Go test (TUG, s). All assessments were conducted in the “on” condition. Participants then registered all falls and near falls by using a diary for six months.

    Results: Mean score for UPDRS III was 14 (SD 7.5). Thirty-six participants (49%) experienced 1 fall and/or near fall (“unstable” group), whereas 38 (51%) had no incidents at all (“stable” group). Simple logistic regression analyses (controlling for age and gender) showed that (P0.05 in all instances) the NRT was the strongest predictor (OR = 5.70) followed by TG (OR = 3.45). Better BBS-scores (OR = 0.88) and gait speed (OR = 0.26) were associated with a decreased risk of instability. The longer time to perform TUG, the higher risk of being unstable (OR = 1.14). When considering all five variables (i.e. tests) simultaneously only BBS was found significant (OR = 0.91, P 5 0.04).

    Conclusions: Clinical balance and gait tests can predict a future instability in people with PD. Further studies using larger samples are needed for firmer conclusions and to establish sensitivity/specificity and cut-off values for these tests.

  • 36.
    Lindholm, Beata
    et al.
    Lund University.
    Oskar, Hansson
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Nilsson, Maria
    Lund University.
    Walking difficulties is the strongest contributing factor to fear of falling among people with mild Parkinson’s disease2013Conference paper (Refereed)
    Abstract [en]

    Objective: Fear of falling is common among people with Parkinson’s disease (PD) and may cause activity limitations and restrictions in participation. The aim of this study was to investigate contributing factors to fall-related self-efficacy in a clinical sample of people with PD.

    Methods: The study included 104 people with PD that visited a neurological clinic during 2006-2011. Those >80 years of age, requiring support in standing or that did not understand the instructions were excluded. Mean (SD) age and PD-duration were 68 (9.4) and 5 (4.2) years, respectively; the mean (SD) “on” phase UPDRS III score was 14.5 (8.1). Fall-related self-efficacy (the dependent variable) was investigated with the Swedish version of the Falls Efficacy Scale, i.e. FES(S). Multiple linear regression analysis included independent variables targeting walking difficulties in daily life, freezing of gait, dyskinesia, fatigue, need of help in daily activities, age, PD-duration, history of falls/near falls, and pain.

    Results: The median FES(S) score was 117 (q1-q3, 70129; minmax, 11130). Three significant independent variables were identified explaining 66% of the variance in FES(S) scores. The strongest contributing factor to fall-related self-efficacy was walking difficulties (explaining 60%), followed by fatigue and need for help in daily activities. These observations suggest that walking difficulties in daily life is the strongest contributing factor to fall-related selfefficacy in a mildly affected PD-sample. Targeting walking difficulties may help reduce fear of falling among people with PD.

  • 37.
    Ljusbäck, Ann Margreth
    et al.
    Umeå University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Nilsson, Maria
    Lund University.
    Sperens, Maria
    Umeå University.
    Forsgren, Lars
    Umeå University.
    Hariz, Gun-Marie
    Umeå University.
    Psychometric properties of a modified self-rating version of the ADL taxonomy for people with Parkinson´s disease2014Conference paper (Refereed)
    Abstract [en]

    Objective: To investigate the reliability and validity of a modified self-rated version of the ADL taxonomy targeting personal activities of daily living (P-ADL) for people with Parkinson’s disease (PD).

    Background: People with PD develop ADL-difficulties early on. There is a need for a reliable and valid self-administered questionnaire targeting P-ADL.

    Methods: A postal survey was sent to 282 non-demented persons with PD; 191 responded of whom 158 (mean±SD age 70±9 years, 41% women, duration of disease 6±5.5 years) answered all items of the following questionnaires: the P-ADL taxonomy, the Parkinson’s disease Activities of Daily Living Scale (PADLS), the Visual Analogue Scale of the EuroQoL-5-Dimensions Questionnaire (EQ-5DVAS), as well as demographic questions. The P-ADL taxonomy was analysed regarding corrected item-total correlations, reliability (Cronbach’s alpha) and floor/ceiling effects; Spearman’s rho (rs) was used to explore external validity relative to the PADLS and EQ-5D-VAS.

    Results: Item-total correlations were above 0.5 and Cronbach’s alpha was 0.98. Floor effect was 15% and there was no ceiling effect. The P-ADL taxonomy correlated 0.75 with the PADLS and -0.63 with the EQ-5D VAS.

    Conclusions: In this PD sample, the modified and selfadministered version of the P-ADL taxonomy showed satisfying reliability and validity; these findings suggest a promising potential for use in clinical practice and research.

  • 38.
    Masferrer, Roberto
    et al.
    Masferrer Neurosurgical, Colorado Springs.
    Prendergast, Virginia
    Barrow Neurological Institute, Phoenix.
    Hagell, Peter
    Section of Restorative Neurology, Department of Clinical Neuroscience, University Hospital, Lund.
    Colored pain drawings: preliminary observations in a neurosurgical practice2003In: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 7, no 3, p. 213-217Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Black and white pain drawings were introduced as a proposed means to identify patients, presenting with low back pain, who demonstrated functional overlay upon neurological testing. The use of color may enhance the usefulness of such pain drawings, but has not been described for adult patients.

    AIMS: To retrospectively explore the use of colored pain drawings in patients with neck, low back, or radicular pain.

    METHODS: Patients with neck, low back, or radicular pain referred to a community-based neurosurgical practice for evaluation during 1 year (n=359) depicted their pain on anatomical drawings using colored pencils representing different pain characteristics. Patients with abnormal (n=55) and normal (n=54) pain drawings were selected for this study. Use of medications, findings on physical examination, radiographic findings, activity levels, Waddell signs, and pending litigation were recorded and compared between patients with normal and abnormal pain drawings, as assessed according to the Ransford penalty point system.

    RESULTS: Patients whose colored pain drawings were abnormal, demonstrated a greater use of medications, more non-focal clinical findings, Waddell signs, impaired activity levels, involvement in pending litigation, and significantly fewer pathological radiographic findings than patients with normal pain drawings.

    CONCLUSIONS: Our findings agree with previous observations using black and white pain drawings, indicating that colored pain drawings are no less useful than the black and white approach. Further research is necessary to examine the psychometric properties and clinical usefulness of colored pain drawings to predict outcomes and/or determine treatment.

  • 39. Mehta, Shyamal H.
    et al.
    de Roos, Paul
    Uppsala universitet.
    Bloem, Bas
    Kelley, Thomas
    Angelo, Antonini
    Dodel, Richard
    Hagell, Peter
    Kristianstad University, School of Health and Society. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Martinez-Martin, Pablo
    Odin, Per
    Lund University.
    Chaudhuri, Ray
    Weintraub, Daniel
    Uitti, Ryan
    Standard set measuring patient-centred outcomes in Parkinson's disease: an international, cross-disciplinary effort2015Conference paper (Other academic)
  • 40.
    Nilsson, Maria H.
    et al.
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Department of Health Sciences, Lund University.
    Freezing of Gait Questionnaire: validity and reliability of the Swedish version2009In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 120, no 5, p. 331-334Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Patient-reported assessments of freezing of gait (FOG) in Parkinson's disease (PD), such as the FOG questionnaire (FOGQ), are needed because FOG is difficult to assess objectively. However, the measurement properties of the FOGQ have been sparsely assessed.

    AIM: To assess the measurement properties of the Swedish FOGQ, and to explore relationships between FOGQ scores and other aspects of PD. Methods - Thirty-seven people with PD were assessed with the FOGQ, Unified PD Rating Scale (UPDRS), Hoehn and Yahr (HY), Falls-Efficacy Scale [FES(S)], timed gait tests, and the SF-36 physical functioning (PF) scale.

    RESULTS: Mean (SD) FOGQ item scores ranged between 1.3 and 2.1 (1.2-1.5); corrected item-total correlations ranged between 0.80 and 0.94. Reliability was 0.95. Mean (SD) and median (q1-q3) FOGQ scores were 9.6 (7.4) and 10 (2-15). Floor and ceiling effects were < or =5.4%. FOGQ correlated strongest with UPDRS part II (ADL), UPDRS item 14 (freezing), and HY (r(S) 0.65-0.66). FOGQ scores correlated with PD duration, the Timed Up and Go test, dyskinesia, motor fluctuations, FES(S), and PF scores (r(S) 0.40-0.62). Fallers had higher FOGQ scores than non-fallers (median 12.5 vs 5.0).

    CONCLUSION: Data support the measurement properties of the Swedish FOGQ by replicating and extending previous psychometric reports.

  • 41.
    Nilsson, Maria
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hariz, Gun-Marie
    Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Iwarsson, Susanne
    Department of Health Sciences, Lund University, Lund, Sweden.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Walking ability is a major contributor to fear of falling in people with Parkinson’s disease: implications for rehabilitation2012In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, p. 713236-Article in journal (Refereed)
    Abstract [en]

    Although fear of falling (FOF) is common in people with Parkinson's disease (PD), there is a lack of research investigating potential predictors of FOF. This study explored the impact of motor, nonmotor, and demographic factors as well as complications of drug therapy on FOF among people with PD. Postal survey data (including the Falls Efficacy Scale, FES) from 154 nondemented people with PD were analyzed using multiple regression analyses. Five significant independent variables were identified explaining 74% of the variance in FES scores. The strongest contributing factor to FOF was walking difficulties (explaining 68%), followed by fatigue, turning hesitations, need for help in daily activities, and motor fluctuations. Exploring specific aspects of walking identified three significant variables explaining 59% of FOF: balance problems, limited ability to climb stairs, and turning hesitations. These results have implications for rehabilitation clinicians and suggest that walking ability is the primary target in order to reduce FOF. Specifically, balance, climbing stairs, and turning seem to be of particular importance.

  • 42.
    Nilsson, Maria
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Jonasson, Stina
    Department of Health Sciences, Lund University, Lund, Sweden.
    Lindholm, Beata
    Department of Clinical Sciences, Lund University, Malmö, Sweden.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Iwarsson, Susanne
    Department of Health Sciences, Lund university.
    Walking difficulties is the main contributor to fear of falling in people with Parkinson’s disease2017Conference paper (Refereed)
  • 43.
    Persson, Carina
    et al.
    Department of clinical neuroscience and rehabilitation, institute of neuroscience and physiology rehabilitation Medicine, sahlgrenska academy, university of Gothenburg, Gothenburg, sweden.
    Linder, Annika
    Department of physiotherapy, nu-hospital Group, trollhättan/uddevalla, sweden.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Measurement properties of the Swedish modified version of the Postural Assessment Scale for Stroke Patients (SwePASS) using Rasch analysis2017Conference paper (Refereed)
  • 44.
    Piccini, Paola
    et al.
    MRC Clinical Sciences Centre and Division of Neuroscience, Faculty of Medicine, Imperial College, Hammersmith Hospital.
    Pavese, Nicola
    MRC Clinical Sciences Centre and Division of Neuroscience, Faculty of Medicine, Imperial College, Hammersmith Hospital.
    Hagell, Peter
    of Restorative Neurology, University Hospital, Lund.
    Reimer, Jan
    of Restorative Neurology, University Hospital, Lund.
    Björklund, Anders
    Division of Neurobiology, Lund University.
    Oertel, Wolfgang H
    Quinn, Niall P
    6Department of Neurology, University of Marburg.
    Brooks, David J.
    Sobell Department of Motor Neuroscience and Movement Disorders, London.
    Lindvall, Olle
    Section of Restorative Neurology, University Hospital, Lund.
    Factors affecting the clinical outcome after neural transplantation in Parkinson's disease2005In: Brain, ISSN 0006-8950, E-ISSN 1460-2156, Vol. 128, no 12, p. 2977-2986Article in journal (Refereed)
    Abstract [en]

    Intrastriatal grafts of embryonic mesencephalic tissue can survive in the brains of patients with Parkinson's disease, but the degree of symptomatic relief is highly variable and some cases develop troublesome dyskinesias. Here we explored, using clinical assessment and 18F-dopa and 11C-raclopride PET, factors which may influence the functional outcome after transplantation. We observed increased 18F-dopa uptake in the grafted putamen, signifying continued survival of the transplanted dopaminergic neurons, in parallel with a progressive reduction of 18F-dopa uptake in non-grafted regions for the whole patient group. The patients with the best functional outcome after transplantation exhibited no dopaminergic denervation in areas outside the grafted areas either preoperatively or at 1 or 2 years post-operatively. In contrast, patients with no or modest clinical benefit showed reduction of 18F-dopa in ventral striatum prior to or following transplantation, which may have limited graft-induced improvement. We obtained no evidence that dyskinesias were caused by abnormal dopamine (DA) release from the grafts. As has been observed for intrinsic dopaminergic neurons, there was a significant correlation between 18F-dopa uptake and methamphetamine-induced change of 11C-raclopride binding (as a measure of DA release) in the putamen containing the graft. Furthermore, we observed no correlation between 11C-raclopride binding in anterior, posterior or entire putamen under basal conditions or after methamphetamine, and dyskinesia severity scores in the contralateral side of the body. Withdrawal of immunosuppression at 29 months after transplantation caused no reduction of 18F-dopa uptake or worsening of UPDRS motor score, indicating continued survival and function of the graft. However, patients showed increased dyskinesia scores, which might have been caused either by growth of the graft or worsening of a low-grade inflammation around the graft. These findings indicate that poor outcome after transplantation is associated with progressive dopaminergic denervation in areas outside the grafts, a process which may have started already before surgery. Also, that the development of dyskinesias after transplantation is not associated with excessive DA release from the grafts. Finally, our data provide evidence that long-term immunosuppression can be withdrawn without interfering with graft survival or the motor recovery induced by transplantation.

  • 45.
    Reimer, J.
    et al.
    University Hospital, Lund.
    Grabowski, M.
    University Hospital, Lund.
    Lindvall, O.
    University Hospital, Lund.
    Hagell, Peter
    Lund University.
    Use and interpretation of on/off diaries in Parkinson's disease2004In: Journal of Neurology, Neurosurgery and Psychiatry, ISSN 0022-3050, E-ISSN 1468-330X, Vol. 75, no 3, p. 396-400Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To explore the use and interpretation of self reported on/off diary data for assessment of daily motor fluctuations in Parkinson's disease.

    METHODS: 26 consecutive non-demented patients with fluctuating Parkinson's disease received standardised training on how to fill out the four category CAPSIT-PD on/off diary, followed by four hours of clinical observation and four weeks of daytime on/off diaries every 30 minutes at home.

    RESULTS: Overall patient-clinician agreement in diary entries was good (kappa = 0.62; weighted kappa = 0.84). Agreement for individual diary categories was good for "off" and "on with dyskinesias" (kappa = > or =0.72), but moderate for "partial off" and "on" (kappa = 0.49). The overall validity of patient kept diaries was supported by expected symptom severity variability across diary categories, as assessed in the clinic. One day's home diary data failed to predict outcomes from the full four weeks for all diary categories, and data from three days failed to yield good prediction (predefined as R(2) = > or =approximately 0.7) for the time spent in "off" and "partial off". Data from one week yielded good prediction (R(2) = > or =0.74) in all instances except "partial off", which could not be well predicted even when two weeks' home diary data were considered (R(2) = 0.52).

    CONCLUSIONS: The data provide support for the overall accuracy and validity of the four category CAPSIT-PD on/off diary, but suggest that a three category diary format may improve accuracy and validity. Interpretation of diary data beyond the assessed time frame should be made with caution unless diaries have been kept for sufficiently long periods.

  • 46.
    Rosqvist, Kristina
    et al.
    Lunds universitet.
    Hagell, Peter
    Kristianstad University, School of Health and Society. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Odin, Per
    Lunds universitet.
    Iwarsson, Susanne
    Lunds universitet.
    Ekström, Henrik
    Lunds universitet.
    Nilsson, Maria
    Lunds universitet.
    Life satisfaction in Parkinson’s disease: associated factors2016Conference paper (Other academic)
    Abstract [en]

    Objective: To identify factors associated with life satisfaction (LS) in people with Parkinson’s disease (PD), including a specific focus on those with late stage PD.

    Background: Despite that patients with PD have an increased risk of reduced LS, there is limited knowledge regarding which factors are associated with LS. Such knowledge could serve as an important base for optimizing treatment and care. Concerning patients with late stage PD, i e Hoehn and Yahr (HY) IV-V, no published study has specifically addressed LS for this group.

    Methods: Data from 251 persons with PD (median age 70 years and duration 8 years) was analyzed statistically; the total sample was assessed and a subsample with late stage PD was further evaluated separately. LS was assessed by item 1 of the Life Satisfaction Questionnaire (LiSat-11). A large number of independent variables were described in relation to HY for groups HY I-III and IV-V, differences between the groups were tested. Sample characteristics in relation to LS were tested with simple logistic regression analyses. Independent variables with a p-value < 0.3 in the simple logistic regressions were entered into a multiple logistic regression model. For the subsample with late stage PD, simple logistic regression analyses were calculated.

    Results: The simple logistic regression analyses showed that 11 out of the 20 independent variables were significantly associated with LS: need of help with ADL; walking difficulties; number of non-motor symptoms (NMS); fatigue; depressive symptoms; general self-efficacy; pain; PD severity; freezing episodes; gender (women) and fluctuations. When controlling for age and gender in the multiple logistic regression model, two independent variables were found to be independently associated with LS; depressive symptoms (negatively associated with high LS) and general self-efficacy (positively associated with high LS). For late stage PD, when controlling for age and gender in simple logistic regression analyses, associated factors with LS were: number of NMS, general self-efficacy, walking difficulties and fatigue, all except for general self-efficacy were negatively associated with high LS.

    Conclusions: This study identified factors associated with LS in a population with PD and further factors associated with LS for those with late stage PD. The ultimate goal for PD care should be improvement in LS and therefore the identification of associated factors has direct clinical implication.

  • 47.
    Rosqvist, Kristina
    et al.
    artment of Clinical Sciences Lund, Lund University, Lund, Sweden.
    Horne, Malcolm
    Florey Institute for Neuroscience and Mental Health, University of Melbourne, Parkville, Victoria, Australia.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Iwarsson, Susanne
    Department of Health Sciences, Lund university.
    Nilsson, Maria
    Department of Health Sciences, Lund University, Lund, Sweden.
    Odin, Per
    Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
    Levodopa effect and motor function in late stage Parkinson’s disease2017In: Movement Disorders, 2017, Vol. 32, p. 915-916Conference paper (Refereed)
    Abstract [en]

    Objective: To assess responsiveness to Levodopa (L-dopa) in patients with late stage Parkinson’s disease (PD). Moreover, to investigate if the L-dopa effect is stable or whether motor fluctuations and dyskinesias are present.

    Background: A majority of PD patients treated with L-dopa develop motor complications, in many cases within a few years of treatment. It is unclear to which degree L-dopa remains effective also in the last stages and whether motor fluctuations and dyskinesias remain a problem.

    Methods: The study included 30 patients with PD in Hoehn and Yahr (HY) stages IV and V in “on” and/or having a substantial need of help with ADL (<50% Schwab and England Scale) and having been diagnosed with PD for =7 years. Nineteen were men, median age 83 and median PD duration 12 years. Nineteen were in HY stage IV and 11 in V. L-dopa responsiveness was assessed with an L-dopa test and motor evaluation according to a standardized protocol in the defined “off” and defined “on” state. Motor performance was assessed by the Unified PD Rating Scale (UPDRS) III and timed tests for gait and hand-arm. The participants were further evaluated with a mobile movement-analyses-system, the Parkinson’s Kinetigraph (PKG) for 10 days.

    Results: The number of participants with an improvement in UPDRS III during L-dopa test of =15% were 15 (50%) and of =30% were 6 (20%). The median UPDRS III score in “off” was 46 (q1-q3, 37-53) and in “on” 36 (28-46), with a median improvement of 15.5% (8-27%), p<0.001. There was a statistically significant effect in almost all variables; UPDRS III total score; speech (item 18); resting tremor (item 20); tremor (items 20, 21); rigidity (item 22); bradykinesia (items 23-26, 31); gait (item 29); axial signs (items 18, 19, 22, 27-30); dyskinesias (Clinical Dyskinesia Rating Scale); hand-arm movement; gait test and blood pressure. According to the UPDRS IV, 67% experienced predictable off-fluctuations, while 30% had unpredictable off-fluctuations. The prevalence of dyskinesias according to item 32 (duration of dyskinesias =1) of the UPDRS IV was 47%. According to the PKG registrations, some patients were experiencing significant motor fluctuations, though very few had significant dyskinesias.

    Conclusions: Half of a group of patients with late stage PD (HY IV-V in “on”) had a significant L-dopa response (=15% on the UPDRS III). According to the UPDRS IV, a majority of the patients still had motor fluctuations and about half had dyskinesias.

  • 48.
    Rosqvist, Kristina
    et al.
    Lund University.
    Odin, Per
    Lund University.
    Hagell, Peter
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Iwarsson, Susanne
    Lund university.
    Nilsson, Maria
    Lund University.
    Storch, Alexander
    Dopaminergic effect on non-motor symptoms in late stage Parkinson's disease2018In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 8, no 3, p. 409-420Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Non-motor symptoms (NMS) are common in late stage Parkinson's disease (PD), as the frequency and severity of most of these symptoms increase with advancing disease.

    OBJECTIVE: To assess effect of dopaminergic therapy on NMS in late stage PD and to investigate relationships between dopaminergic effect on NMS and on motor function.

    METHOD: Thirty PD patients in Hoehn and Yahr (HY) stages IV and V in "on" were included. Dopaminergic effect on non-motor symptomatology was assessed by the modified version of the Non-Motor Symptoms Scale (NMSS) in the "off" and the "on" state during a standardized L-dopa test, in parallel also assessing motor function.

    RESULTS: NMS were common and many of the symptoms occurred in >80% of the individuals. The highest NMSS scores were seen within the NMSS domains 3: mood/apathy and 7: urinary in both the "off" and the "on" state. There was a statistically significant (p <  0.001) improvement in the modified NMSS total score (median) from 79 in "off" to 64 in "on". There were statistically significant differences between the "off" and the "on" state for domains 2: sleep/fatigue, 3: mood/apathy, 5: attention/memory, 6: gastrointestinal and 7: urinary. The differences in the NMSS score between the "off" and the "on" state were in general larger for motor responders than for motor non-responders. In motor non-responders, differences of the NMSS score between the "off" and the "on" state were found for the total score, domain 3: mood/apathy and its item 11-flat moods.

    CONCLUSION: There is an effect of dopaminergic medication on NMS in late stage PD, to some extent also for those with a non-significant response on motor function during L-dopa test. It is therefore of importance to optimize dopaminergic therapy in order to give the most effective symptomatic treatment possible.

  • 49.
    Sjödahl Hammarlund, Catharina
    et al.
    Lund University.
    Hagell, Peter
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Nilsson, Maria H
    Lund University.
    Motor and non-motor predictors of illness-related distress in Parkinson's disease2012In: Focus on Parkinson's disease, ISSN 0924-2015, Vol. 23, no 1, p. 27-28Article in journal (Other academic)
  • 50.
    Sjödahl Hammarlund, Catharina
    et al.
    Lund University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Environment PRO-CARE. Kristianstad University, Research Platform for Collaboration for Health.
    Nilsson, Maria H.
    Lund University.
    Motor and non-motor predictors of illness-related distress in Parkinson's disease2012In: Parkinsonism & Related Disorders, ISSN 1353-8020, E-ISSN 1873-5126, Vol. 18, no 3, p. 299-302Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To identify motor and non-motor symptoms independently associated with distress in Parkinson's disease (PD).

    METHOD: Clinical and patient-reported data from 118 people with PD (mean age and PD-duration, 64 and 8 years) were analyzed regarding associations with patient-reported distress using multiple regressions (controlling for age).

    RESULTS: Non-motor symptoms independently associated with distress were pain, fatigue, sleep, depression and anxiety (R(2), 0.81). The only significant motor aspect was mobility (R(2), 0.31). When considering both motor and non-motor symptoms, fatigue, pain, depression and sleep showed independent associations with distress (R(2), 0.76).

    CONCLUSION: Distress in PD is primarily associated with non-motor features.

12 1 - 50 of 55
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