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  • 51.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Chen, H
    Singapore.
    Evans, V
    Australien.
    O'Brien, E
    Australien.
    Thomas, S
    England.
    Hoeck, B
    Danmark.
    Halberstadt, J
    Israel.
    Abrefah, A F
    Ghana.
    Kadesha, K
    Albanien.
    Shephard, T J
    USA.
    Schultka, S
    Tyskland.
    International perspectives on stroke rehabilitation1999In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 31, no 2Article in journal (Refereed)
  • 52.
    Hagell, Peter
    et al.
    Lund University.
    Crabb, L
    USA.
    Pogarell, O
    Schrag, A
    England.
    Widner, H
    Region Skåne.
    Brooks, D J
    England.
    Oertel, W H
    Quinn, N P
    Lindvall, O
    Lund University.
    Health-related quality of life following bilateral intrastriatal transplantation in Parkinson's disease2000In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 15, no 2Article in journal (Refereed)
    Abstract [en]

    Intrastriatal transplantation of embryonic dopaminergic tissue is a new, experimental approach for the treatment of Parkinson's disease (PD). Clinical trials have shown longterm graft survival and therapeutically valuable improvements with decreased L-dopa dose and time spent in the "off"-phase, and reduced rigidity and hypokinesia. We have measured health-related quality of life (HRQoL) using the Nottingham Health Profile (NHP) in five patients subjected to bilateral transplantation in the caudate and putamen to explore the influence of intrastriatal grafts on HRQoL and the value of such measures in trials of restorative therapies. The results demonstrate improved HRQoL following transplantation, with individual patients showing striking improvements within different dimensions of the NHP as well as the NHP distress index (NHPD). The most pronounced improvements after grafting were observed for physical mobility along with emotional reactions and energy. These results indicate that intrastriatal transplantation of embryonic dopaminergic tissue can give rise to improvements within most areas of HRQoL, and that HRQoL measurements provide important information additional to that obtained by traditional, symptom-oriented assessment protocols. However, the optimal approach to HRQoL measurement in PD remains to be determined.

  • 53.
    Hagell, Peter
    et al.
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Edfors, Ellinor
    Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Hedin, Gita
    Kristianstad University, School of Health and Society, Avdelningen för Oral hälsa och folkhälsovetenskap. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Sjödahl Hammarlund, Catharina
    Lund University.
    Group concept mapping for evaluation and development in nursing education2016In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 20, p. 147-153Article in journal (Refereed)
    Abstract [en]

    The value of course evaluations has been debated since they frequently fail to capture the complexity of education and learning. Group Concept Mapping (GCM), a participant-centred mixed-method was explored as a tool for evaluation and development in nursing education and to better understand students' learning experiences, using data from a GCM-based evaluation of a research training assignment integrating clinical practice and research data collection within a Swedish university nursing program. Student nurses (n = 47) participated in a one-day GCM exercise. Focus group brainstorming regarding experiences from the assignment that the students considered important and instructive yielded 98 statements that were individually sorted based on their student-perceived relationships, and rated regarding their importance/instructiveness and need for development. Quantitative analysis of sort data produced a 2-dimensional map representing their conceptual relationships, and eight conceptual areas. Average cluster ratings were plotted relative to each other and provided a decision aid for development and planning by identifying areas (i.e., "Research methodology", "Patients' perspectives", and "Interviewer role") considered highly important/instructive and in high need for development. These experiences illustrate the use and potential of GCM as an interactive participant-centred approach to evaluation, planning and development in nursing and other higher health science educations.

  • 54.
    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.

  • 55.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Hedin, Per-Johan
    Department of Rheumatology, Central Hospital, Falun.
    Meads, David M.
    Galen Research Ltd., Manchester.
    Nyberg, Lennart
    Centre for Languages and Literature, Lund University.
    McKenna, Stephen P.
    Galen Research Ltd., Manchester.
    Effects of method of translation of patient-reported health outcome questionnaires: a randomized study of the translation of the Rheumatoid Arthritis Quality of Life (RAQoL) Instrument for Sweden2010In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 13, no 4, p. 424-430Article in journal (Refereed)
    Abstract [en]

    AIMS: To compare two versions of a questionnaire translated using forward-backward (FB) translation and dual-panel (DP) methodologies regarding preference of wording and psychometric properties.

    METHODS: The Rheumatoid Arthritis Quality of Life instrument was adapted into Swedish by two independent groups using FB and DP methodologies, respectively. Seven out of thirty resulting items were identical. Nonidentical items were evaluated regarding preference of wording by 23 bilingual Swedes, 50 people with rheumatoid arthritis (RA), and 2 lay panels (n = 11). Psychometric performance was assessed from a postal survey of 200 people with RA randomly assigned to complete one version first and the other 2 weeks later.

    RESULTS: Preference did not differ among the 23 bilinguals (P = 0.196), whereas patients and lay people preferred DP over FB item versions (P < 0.0001). Postal survey response rates were 74% (FB) and 75% (DP). There were more missing item responses in the FB than the DP version (6.9% vs. 5.6%; P < 0.0001). Floor/ceiling effects were small (FB, 6.1/0%; DP, 4.4/0.7%) and reliability was 0.92 for both versions. Construct validity was similar for both versions. Differential item functioning by version was detected for five items but cancelled out and did not affect estimated person measures.

    CONCLUSIONS: The DP approach showed advantages over FB translation in terms of preference by the target population and by lay people, whereas there were no obvious psychometric differences. This suggests advantages of DP over FB translation from the patients' perspective, and does not support the commonly held view that FB translation is the "gold standard."

  • 56.
    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.

  • 57.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE. Department of Health Sciences, Lund University.
    Höglund, Arja
    Reimer, Jan
    Eriksson, Brita
    Knutsson, Ingmari
    Widner, Håkan
    Cella, David
    Measuring fatigue in Parkinson's disease: a psychometric study of two brief generic fatigue questionnaires.2006In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 32, no 5, p. 420-32Article in journal (Refereed)
    Abstract [en]

    This study evaluated and compared the measurement properties of the 13-item Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and the 9-item Fatigue Severity Scale (FSS) in 118 consecutive Parkinson's disease (PD) patients, using traditional and Rasch measurement methodologies. Both questionnaires exhibited excellent data quality and reliability (coefficient alpha>or=0.9), and acceptable rating scale functionality, and both discriminated between fatigued and nonfatigued patients. Factor and Rasch analyses provided general support for unidimensionality of both FACIT-F and FSS, although they do not appear to measure identical aspects of fatigue. No signs of differential item functioning (DIF) were found for the FACIT-F, whereas potential age DIF was detected for two FSS items. These results support the measurement validity of both questionnaires in PD, although the FACIT-F displayed better measurement precision and modest psychometric advantages over the FSS. Availability of psychometrically sound fatigue measures that are applicable across disorders provides a sound basis for advancing the understanding of this common and distressing complaint.

  • 58.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Knutsson, Ida
    Lund University.
    Single-item assessment of perceived health in neurological disorders: verbal response categories vs visual analog scale2013In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, no 1 Suppl., p. 116-117Article in journal (Refereed)
  • 59.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Knutsson, Ida
    Department of Health Sciences, Lund University, Lund, Sweden.
    Samuelson, Karin
    Institutionen för hälsa, vård och samhälle, Medicinska fakulteten, Lunds Universitet.
    Interpretation of response categories in patient-reported rating scales: a test-retest study among people with neurological disorders2012Conference paper (Refereed)
  • 60.
    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.

  • 61.
    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.

  • 62.
    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.

  • 63.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Nordling, Sara
    Swedish Institute for Health Economics.
    Reimer, Jan
    Lund University Hospital.
    Grabowski, Martin
    Lund University Hospital.
    Persson, Ulf
    Swedish Institute for Health Economics.
    Resource use and costs in a Swedish cohort of patients with Parkinson's disease2002In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 17, no 6, p. 1213-1220Article in journal (Refereed)
    Abstract [en]

    We estimated resource use and costs in patients with Parkinson's disease (PD), thereby providing baseline data for future economic evaluations of therapeutic interventions. Data were collected from medical records of a South Swedish cohort of 127 PD patients during 1 year (1996) and a mailed questionnaire inquiring about cost-related consequences and resource use in 1996 and in 2000. Annual costs were calculated based on prevalence and expressed in SEK (monetary value of the year 2000). Direct health care costs averaged approximately SEK 29,000 ( approximately USD 2,900; EUR 3,200) per patient per year, of which drugs were the most costly component. Nonmedical direct costs were higher than direct health care costs, averaging approximately SEK 43,000 ( approximately USD 4,300; EUR 4,800) per patient per year, and costs due to lost production were approximately SEK 52,000 ( approximately USD 5,200; EUR 5,800) per patient per year. The mean total annual cost for PD in our sample approximated SEK 124,000 ( approximately USD 12,400; EUR 13,800) per patient. These findings are roughly within the same range as estimates from other countries and show that PD causes a considerable societal burden. In addition to other outcomes, evaluations of the economic implications of new therapeutic interventions are highly warranted. In this perspective, the present study provides valuable baseline data.

  • 64.
    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.

  • 65.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Odin, P
    Lund University.
    Apomorphine in the treatment of Parkinson's disease2001In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 33, no 1, p. 21-34Article in journal (Refereed)
    Abstract [en]

    Apomorphine is a potent, nonselective, direct-acting dopamine-receptor agonist. Given subcutaneously, it has a rapid onset of antiparkinsonian action qualitatively comparable to that of levodopa. Despite its long history, it was not until peripheral dopaminergic side effects could be controlled by oral domperidone that the clinical usefulness of apomorphine in Parkinson's disease began to be investigated thoroughly in the mid-1980s. Although several routes have been tried, subcutaneous administration, either as intermittent injections or continuous infusion, is so far the best and most applied in the treatment of advanced, fluctuating Parkinson's disease. Clinical trials have shown stable efficacy with markedly reduced time spent in "off" phases as well as, for infusion therapy, reduced levodopa requirements. In the most successful cases, motor fluctuations disappear and the need for oral medication is eliminated. Adverse events are usually mild and dominated by cutaneous reactions. Neuropsychiatric side effects occur, but the influence of apomorphine on these remains controversial. Controlled long-term clinical trials are highly warranted to reveal the full potentials of this treatment. Careful patient selection and follow-up, where the specialized movement disorder nurse has a crucial role, are paramount for a successful long-term outcome. Apomorphine warrants a wider application in the treatment of advanced Parkinson's disease and should be tried before more invasive interventions are considered.

  • 66.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Odin, P
    Lund University.
    Freccero-Rosman, K
    Träskman-Bendz, L
    Lindvall, O
    Depression vanlig vid Parkinsons sjukdom: begränsade studier kring symtom och behandling1994In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 91, no 46, p. 4270-4276Article in journal (Other academic)
  • 67.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Odin, P
    Tyskland.
    Vinge, E
    Lund University Hospital.
    Pregnancy in Parkinson's disease: a review of the literature and a case report1998In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 13, no 1, p. 34-38Article in journal (Refereed)
    Abstract [en]

    Pregnancy is rare in Parkinson's disease (PD). In the literature on studies of antiparkinsonian drugs in animals during pregnancy, there are reports on malformations of the skeletal and circulatory system. However, the majority of studies in animals have not shown any teratogenicity. Amantadine has been teratogenic in rats and selegiline has caused neurochemical and behavioral alterations in rats when coadministered with clorgyline. The published experience with humans consists of 35 pregnancies among 26 women suffering from PD, including this report, and a number of cases treated with antiparkinsonian agents for other reasons. With the exception of the majority of the cases where amantadine was used, complications have been rare. However, there are indications that suggest a possible risk of a woman's parkinsonism worsening in connection with pregnancy. We also report the case of a woman with PD who was treated with L-dopa-benserazide during an uncomplicated pregnancy and gave birth to a healthy boy without experiencing any worsening of her PD.

  • 68.
    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)
  • 69.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Piccini, Paola
    Björklund, Anders
    Brundin, Patrik
    Rehncrona, Stig
    Widner, Håkan
    Crabb, Lesley
    Pavese, Nicola
    Oertel, Wolfgang H
    Quinn, Niall
    Brooks, David J
    Lindvall, Olle
    Dyskinesias following neural transplantation in Parkinson's disease.2002In: Nature Neuroscience, ISSN 1097-6256, E-ISSN 1546-1726, Vol. 5, no 7, p. 627-628Article in journal (Refereed)
    Abstract [en]

    Severe dyskinesias during the 'off' phases (periods of increased Parkinson's disease (PD) disability) have been observed following intrastriatal transplantation of human embryonic mesencephalic tissue. Here we retrospectively analyzed 14 patients who were followed for up to 11 years after grafting, and found that dyskinesias (abnormal involuntary movements and postures) increased during postoperative off phases, but were generally of mild to moderate severity. Dyskinesia severity was not related to the magnitude of graft-derived dopaminergic re-innervation, as judged by (18)F-labeled 6-L-fluorodopa (FD) positron emission tomography (PET), indicating that off-phase dyskinesias probably did not result from excessive growth of grafted dopaminergic neurons.

  • 70.
    Hagell, Peter
    et al.
    Department of Health Sciences, Lund University.
    Reimer, Jan
    Department of Neurology, University Hospital, Lund.
    Nyberg, Per
    Department of Health Sciences, Lund University.
    Whose quality of life?: ethical implications in patient-reported health outcome measurement2009In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 12, no 4, p. 613-617Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Patient-reported health status questionnaires intend to assess illness and therapy from the patients' perspective. To provide fair and valid assessments, they should be equally relevant to major subsets of respondents. Furthermore, disease-specific measures are assumed to be perceived as more relevant than generic ones. This study assessed these assumptions among people with Parkinson's disease.

    METHODS: Cross-sectional data from 202 people with Parkinson's disease (54% men; mean age, 70) were analyzed regarding patient-rated relevance and predictors of patient-rated poor relevance of two generic [the 36-item Short Form Health Survey (SF-36) and Nottingham Health Profile (NHP)] and one disease-specific [Parkinson's Disease Questionnaire (PDQ-39)] health status questionnaire.

    RESULTS: There were no differences in relevance ratings across the questionnaires. Poorer overall quality of life [odds ratio (OR), 2.459] and mental health (OR, 1.023) were associated with poorer patient-rated relevance of the SF-36, and higher age was associated with poorer patient-rated relevance of the PDQ-39 (OR, 1.040). No significant predictors were found for the NHP.

    CONCLUSIONS: The PDQ-39 failed to meet the assumption that disease-specific scales are more relevant than generic ones. Nevertheless, the most important implication of this study is an ethical one. Because the relevance of the SF-36 and PDQ-39 is perceived as poorer by those who fare least well and by older people, these scales may not reflect the perspectives of these groups. This challenges bioethical principles and threatens scientific validity. Perceived relevance of patient-centered outcomes needs to be considered, or the voice of vulnerable groups may be silenced, fair inferences prohibited, and opportunities for improved care lost.

  • 71.
    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.

  • 72.
    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.
    Rouse, Mathew
    England.
    McKenna, Stephen P.
    England.
    Measuring the impact of caring for a family member with Alzheimer's disease2017Conference paper (Other academic)
  • 73.
    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.
    Rouse, Matthew
    England.
    McKenna, Stephen P.
    England.
    Measuring the impact of caring for a spouse with Alzheimer's disease: validation of the Alzheimer’s patient partners life impact questionnaire (APPLIQue)2018In: Journal of Applied Measurement, ISSN 1529-7713, Vol. 19, no 3Article in journal (Refereed)
    Abstract [en]

    Alzheimer’s disease (AD) is the most common form of dementia, characterized by cognitive, psychiatric and behavioral symptoms and increasing dependency. Family members typically assume increasing caregiving responsibilities, with considerable quality of life (QoL) impact. This article describes the testing of a needs-based QoL questionnaire for AD family caregivers. Initial analyses according to Rasch measurement theory suggested that items applied to spousal rather than non-spousal caregivers. Following removal of non-spousal responders, a 25-item questionnaire was identified that exhibited acceptable model fit, a mean (SD) person location of 0.194 (1.42) logits, residual correlations ≤0.173 and absence of DIF by age, gender or administration. Reliability was 0.85. This new measure, the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), may fill an important gap in assessing the impact of AD on spousal caregivers and outcomes of interventions aimed at caregivers as well as persons with AD.

  • 74.
    Hagell, Peter
    et al.
    Lund University.
    Schrag, A
    Piccini, P
    Jahanshahi, M
    Brown, R
    Rehncrona, S
    Widner, H
    Brundin, P
    Rothwell, J C
    Odin, P
    Wenning, G K
    Morrish, P
    Gustavii, B
    Björklund, A
    Brooks, D J
    Marsden, C D
    Quinn, N P
    Lindvall, O
    Sequential bilateral transplantation in Parkinson's disease: effects of the second graft1999In: Brain, ISSN 0006-8950, E-ISSN 1460-2156, Vol. 122, no 6, p. 1121-1132Article in journal (Refereed)
    Abstract [en]

    Five parkinsonian patients who had received implants of human embryonic mesencephalic tissue unilaterally in the striatum 10-56 months earlier were grafted with tissue from four to eight donors into the putamen (four patients) or the putamen plus the caudate nucleus (one patient) on the other side, and were followed for 18-24 months. After 12-18 months, PET showed a mean 85% increase in 6-L-[18F]fluorodopa uptake in the putamen with the second graft, whereas there was no significant further change in the previously transplanted putamen. Two patients exhibited marked additional improvements after their second graft: 'on-off' fluctuations virtually disappeared, movement speed increased, and L-dopa could be withdrawn in one patient and reduced by 70% in the other. The improvement in one patient was moderate. Two patients with atypical features, who responded poorly to the first graft, worsened following the second transplantation. These findings indicate that sequential transplantation in patients does not compromise the survival and function of either the first or the second graft. Moreover, putamen grafts that restore fluorodopa uptake to normal levels can give improvements of major therapeutic value.

  • 75.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Smith, Stephen
    School of Nursing Sciences, Faculty of Medicine and Health, University of East Anglia.
    A psychometric comparison of two Carer Quality of Life Questionnaires in Huntington's disease: implications for neurodegenerative disorders2013In: Journal of Huntington's Disease, ISSN 1879-6397, Vol. 2, no 3, p. 315-322Article in journal (Refereed)
    Abstract [en]

    Background: The carer impact of neurodegenerative disorders such as Huntington's disease (HD) is vast. Attempts to measure carer QoL in neurodegenerative disorders include the three-dimensional (Practical aspects of Caregiving, PC; Satisfaction with Life, SL; Feelings about Living with Huntington's disease, FL) Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) and the unidimensional Alzheimer's Carer's Quality of Life Inventory (ACQLI). However, evidence regarding their psychometric properties is sparse. Objectives: To test and compare the psychometric properties of the HDQoL-C, its short-form, and the ACQLI among HD carers. Methods: Data from 61 HD carers (36 women; mean age, 55) were analysed using traditional psychometric methods. Results: Data completeness was good (&gt;95% computable scale scores) but compromised for the PC and total HDQoL-C scales (≤80% computable scale scores). Scaling assumptions were supported for the SL and ACQLI scales (corrected item-total correlations ≥0.38; scaling success rates, 94–100%) but not for the PC, FL or total HDQoL-C scales (corrected item-total correlations ≥0.08; scaling success rates, 39–62%). Floor/ceiling effects were ≤9.8%. Reliabilities were ≥0.84, except for the PC scale (0.62). Conclusions: The HDQoL-C failed to exhibit suitability as a HD carer outcome measure, as two of its three scales did not meet basic psychometric criteria. The third scale (SL) did not outperform the ACQLI. This suggests that carer impact is not disease specific across neurodegenerative disorders.

  • 76.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE.
    Smith, Steve
    School of Nursing Sciences, Faculty of Medicine and Health, University of East Anglia, Norwich.
    Why psychometrics is important - a response to: Aubeeluck, Buchanan & Stupple (2013) Journal of Huntington's Disease 2(4) 453–4542013In: Journal of Huntington's Disease, ISSN 1879-6397, Vol. 2, no 4, p. 455-457Article in journal (Other academic)
  • 77.
    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.
    Smith, Steve
    Storbritannien.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Manual for translation and cultural adaptation of the Minimal Eating Observation and Nutrition Form – Version II (MEONF-II)2015Report (Other academic)
    Abstract [en]

    This report describes the procedure for translation and cultural

    adaptation of the Minimal Eating Observation and Nutrition Form –

    Version II (MEONF-II) from Swedish or U.K. English for use in other

    languages and countries, including adaptations from Swedish and

    U.K. English to other Swedish (e.g., Finland) and English speaking

    regions (e.g., United States, Canada, Australia), respectively. The

    prescribed methodology is based on the dual-panel approach for

    patient-reported rating scales, but modified for clinical assessment

    tools used by health care professionals. The approach emphasises the

    importance of achieving conceptual rather than linguistic equivalence,

    as well as ease and immediacy of the translation. The procedure

    comprises three main steps: (1) A panel of 3-7 bilingual health care

    professionals work together to produce a first draft target language

    version; (2) Review the first draft target language version by a second

    panel of 3-7 monolingual nurses and/or final year student nurses

    native in the target language; (3) Clinical field-testing of the new

    target language version by 15-30 hospital ward nurses/final year

    student nurses using the MEONF-II with at least five patients each to

    evaluate its user-friendliness and appropriateness. Following a written

    report including all major discussions and difficulties experienced by

    the panels and during field-testing, there is a need for evidence of the

    equivalence of the translated MEONF-II relative to the original

    version, before it can be recommended for general implementation

    into clinical practice. This final step is not covered in any detail here,

    but only outlined in summary. The procedures described here provide

    an easy to follow step-by-step practically oriented manual to facilitate

    the production of high quality translations and adaptations of the

    MEONF-II into new linguistic and cultural settings. This will ease the

    process for nurses and others who are interested in implementing the

    MEONF-II as a means of improving nutritional care for hospital

    inpatients.

  • 78.
    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.

  • 79.
    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.

  • 80.
    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.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I.
    Sample size and statistical conclusions from tests of fit to the Rasch measurement model according to the RUMM2030 program2015Conference paper (Refereed)
    Abstract [en]

    Sample size is a major contributor to statistical null hypothesis testing, which is the basis for many approaches to testing Rasch model fit. To allow for taking this into account, the RUMM2030 Rasch analysis software has the ability to adjust n in the calculation of its chi-2 based fit statistics. This paper examines the effects of such post-hoc adjustments on the statistical conclusions, and explores the occurrence of type I errors with Rasch model fit statistics implemented in RUMM2030. Data simulations of Rasch model fitting 25-item dichotomous scales with sample sizes ranging from n=50-2500 were generated an analysed regarding fit with and without adjusted sample sizes corresponding to the same n values as those simulated. Results suggest that post-hoc downward sample size adjustment is a useful procedure to avoid type I errors when working with relatively large data sets (n≥500). The value of upward adjustment with small data sets is less clear, particularly regarding the total item-trait chi-2 test, which tends to falsely signal misfit. Under the assumption of Rasch model fit, our observations suggest that a sample size around 250 (up to about 500) provides a good balance for the statistical interpretation of RUMM2030 fit statistics.

  • 81.
    Hagell, Peter
    et al.
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Platform for Collaboration for Health.
    Sample size and statistical conclusions from tests of fit to the Rasch model according to the Rasch Unidimensional Measurement Model (RUMM) program in health outcome measurement2016In: Journal of Applied Measurement, ISSN 1529-7713, Vol. 17, no 4, p. 416-431Article in journal (Refereed)
    Abstract [en]

    Sample size is a major factor in statistical null hypothesis testing, which is the basis for many approaches to testing Rasch model fit. Few sample size recommendations for testing fit to the Rasch model concern the Rasch Unidimensional Measurement Models (RUMM) software, which features chi-square and ANOVA/F-ratio based fit statistics, including Bonferroni and algebraic sample size adjustments. This paper explores the occurrence of Type I errors with RUMM fit statistics, and the effects of algebraic sample size adjustments. Data with simulated Rasch model fitting 25-item dichotomous scales and sample sizes ranging from N=50 to N=2500 were analysed with and without algebraically adjusted sample sizes. Results suggest the occurrence of Type I errors with N≥500, and that Bonferroni correction as well as downward algebraic sample size adjustment are useful to avoid such errors, whereas upward adjustment of smaller samples falsely signal misfit. Our observations suggest that sample sizes around N=250 to N=500 may provide a good balance for the statistical interpretation of RUMM fit statistics studied here with respect to Type I errors and under the assumption of Rasch model fit within the examined framed of reference (i.e., about 25 item parameters well targeted to the sample).

  • 82.
    Hagell, Peter
    et al.
    Division of Gerontology and Caring Sciences, Department of Health Sciences, Lund University.
    Westergren, Albert
    Division of Gerontology and Caring Sciences, Department of Health Sciences, Lund University.
    The significance of importance: an evaluation of Ferrans and Powers’ Quality of Life Index2006In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 15, no 5, p. 1251-1256Article in journal (Refereed)
    Abstract [en]

    Ferrans and Powers' Quality of Life Index (QLI) defines and assesses quality of life (QoL) in terms of importance-weighted life satisfaction. This study assessed the value of such weights and explored the relationship between weighted and unweighted (satisfaction only) scores and single-item rated overall life satisfaction (LS) and QoL. Data were collected by a postal survey to 81 Parkinson's disease patients (88% response rate). Correlations between weighted and unweighted QLI scores were >or=0.96, except for one subscale (r ( s ) = 0.85). Item non-response rates ranged between 4.2 and 45.1% and 1.4 and 38% for the weighted and unweighted QLI, respectively. Cronbach's alpha exceeded 0.7 for weighted and unweighted versions of two out of the four subscales and the total score. Scaling success rates were similar for weighted and unweighted scores and did not support the current subscale structure. Unexpectedly, weighted total scores correlated stronger with LS than with QoL, and unweighted scores displayed the opposite pattern. This study found no advantages by using importance-weighted satisfaction scores. The correlational pattern with overall LS and QoL challenges the QLI approach to QoL, although these observations may relate to the use of multiplicative item weights. This study has implications also beyond the QLI regarding, e.g., the use of multiplicative weights and the relationship between life satisfaction and QoL.

  • 83.
    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.

  • 84.
    Hagell, Peter
    et al.
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap I. Kristianstad University, Research Platform for Collaboration for Health.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Platform for Collaboration for Health.
    Janelidze, Shorena
    Lund University.
    Hansson, Oskar
    Lund University.
    The Swedish SCOPA-SLEEP for assessment of sleep disorders in Parkinson's disease and healthy controls2016In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, no 10, p. 2571-2577Article in journal (Refereed)
    Abstract [en]

    PURPOSE: SCOPA-SLEEP is a rating scale for night-time sleep and daytime sleepiness (DS) proposed for use among people with Parkinson's disease (PD) as well as others. We translated it into Swedish and assessed its psychometric properties in PD and age-matched healthy controls.

    METHODS: Following translation according to the dual-panel approach, the Swedish SCOPA-SLEEP was field-tested regarding comprehensibility, relevance and respondent burden (n = 20). It was then psychometrically tested according to classical test theory (data completeness, scaling assumptions, targeting, reliability and construct validity) using data from 149 people with PD and 53 age-matched healthy controls from the prospective Swedish BioFINDER study.

    RESULTS: SCOPA-SLEEP took a mean of 3.5 min to complete and was considered easy to use and relevant. Missing item responses were <8 %, corrected item-total correlations were ≥0.47 (except for one DS item among controls), factor analyses suggested one dimension per scale, floor/ceiling effects were ≤17 %, reliability was ≥0.85 except for the DS scale among controls (0.65) and construct validity was supported.

    CONCLUSIONS: Observations concur with previous evaluations, thus providing initial support for the Swedish SCOPA-SLEEP among people with PD. Further studies are needed to establish its generic properties and to understand its measurement properties in better detail.

  • 85.
    Hagell, Peter
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Westergren, Albert
    Kristianstad University, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.
    Årestedt, Kristofer
    Linnaeus University, Linköping University.
    Beware of the origin of numbers: Standard scoring of the SF-12 and SF-36 summary measures distorts measurement and score interpretations2017In: Research in Nursing & Health, ISSN 0160-6891, E-ISSN 1098-240X, Vol. 40, no 4, p. 378-386Article in journal (Refereed)
    Abstract [en]

    The 12-item Short Form Health Survey (SF-12) is a generic health rating scale developed to reproduce the Physical and Mental Component Summary scores (PCS and MCS, respectively) of a longer survey, the SF-36. The standard PCS/MCS scoring algorithm has been criticized because its expected dimensionality often lacks empirical support, scoring is based on the assumption that physical and mental health are uncorrelated, and because scores on physical health items influence MCS scores, and vice versa. In this paper, we review the standard PCS/MCS scoring algorithm for the SF-12 and consider alternative scoring procedures: the RAND-12 Health Status Inventory (HSI) and raw sum scores. We corroborate that the SF-12 reproduces SF-36 scores but also inherits its problems. In simulations, good physical health scores reduce mental health scores, and vice versa. This may explain results of clinical studies in which, for example, poor physical health scores result in good MCS scores despite compromised mental health. When applied to empirical data from people with Parkinson's disease (PD) and stroke, standard SF-12 scores suggest a weak correlation between physical and mental health (rs .16), whereas RAND-12 HSI and raw sum scores show a much stronger correlation (rs .67-.68). Furthermore, standard PCS scores yield a different statistical conclusion regarding the association between physical health and age than do RAND-12 HSI and raw sum scores. We recommend that the standard SF-12 scoring algorithm be abandoned in favor of alternatives that provide more valid representations of physical and mental health, of which raw sum scores appear the simplest.

  • 86.
    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.

  • 87.
    Hagell, Peter
    et al.
    Lund University Hospital.
    Widner, Håkan
    Lund University Hospital.
    Clinical rating of dyskinesias in Parkinson's disease: use and reliability of a new rating scale1999In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 14, no 3, p. 448-455Article in journal (Refereed)
    Abstract [en]

    Drug-induced dyskinesias (DID) manifested as hyperkinetic and/or dystonic movements or postures are common problems in Parkinson's disease (PD). Novel therapeutic interventions may offer possibilities to counteract these common adverse effects of an otherwise necessary treatment. To be able to evaluate the effects of such interventions on DID, reliable and relevant clinical assessment tools are needed. We tested the inter- and intrarater reliability of a new clinical dyskinesia rating scale consisting of separate ratings of different body parts, including lateralization and separate ratings of dystonia and hyperkinesias. Interrater reliability was tested both with and without a defined scoring code and clarification of the dystonia section. The nondefined version was also tested for intrarater reliability. Thirteen raters independently reviewed 23 videotape sequences showing PD patients performing standardized motor tests. Inter- and intrarater agreement was significant in all evaluations, and no differences were detected when comparing ratings performed with the defined and nondefined version of the scale. The rationale for, and the role and use of, the present scale are addressed.

  • 88.
    Heaney, Alice
    et al.
    England.
    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.
    McKenna, Stephen P.
    England.
    Measuring fatigue in Crohn’s disease: the importance of a coherent theoretical measurement model2017Conference paper (Other academic)
  • 89.
    Heaney, Alice
    et al.
    England.
    McKenna, Stephen P
    England.
    Hagell, Peter
    England.
    Sengupta, Raj
    England.
    Improving scoring precision and internal construct validity of the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) using Rasch Measurement Theory2019In: Journal of Rheumatology, ISSN 0315-162X, E-ISSN 1499-2752Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To test the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) according to Rasch Measurement Theory and investigate whether measurement precision can be improved.

    METHODS: Secondary analysis of a BASDAI database. The data had been collected from individuals starting an Ankylosing Spondylitis Exercise Course at the Royal National Hospital for Rheumatic Diseases in Bath, UK.

    RESULTS: Data were available for 250 (23.6% female) participants aged between 18 and 85 (mean 52.8; SD 14.6) years. Initial fit of the data to the Rasch model appeared good and item thresholds were consistent, but local item dependence (LID) was identified. After addressing the LID a unidimensional measure was achieved. The Person Separation Index (reliability) was 0.83 and the location of the items was well matched to that of the respondents. A transformation table was generated to convert total raw BASDAI scores into linearized Rasch transformed scores, that form an interval scale. The Smallest Detectable Difference improved from 2 to 1.2. This finding suggests that a change score of greater than 1.2 points on the modified BASDAI is required to achieve meaningful change.

    CONCLUSION: Applying the Rasch transformed scores simplifies completion and scoring of the measure and confirms internal construct validity. It also ensures linear measurement and justifies the use of parametric statistical analyses when analysing datasets. The transformation table can be used with existing BASDAI datasets to allow direct comparisons of disease activity scores with those generated from future studies.

  • 90.
    Heaney, Alice
    et al.
    England.
    McKenna, Stephen P.
    England.
    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.
    Sengupta, Raj
    England.
    Using Rasch analysis to determine the internal validity of the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)2018In: International Conference on Probabilistic Models for Measurement, 2018Conference paper (Other academic)
  • 91.
    Hedin, Gita
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    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.
    Norell-Clarke, Annika
    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.
    Garmy, Pernilla
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Adolescent´s experiences of sleep and electronic media use2019Conference paper (Refereed)
  • 92.
    Hedin, Gita
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    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.
    Norell-Clarke, Annika
    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.
    Garmy, Pernilla
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Adolescent´s experiences of sleep and electronic media use2019Conference paper (Refereed)
  • 93.
    Hellqvist, Carina
    et al.
    Linköping University Hospital.
    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, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Berterö, Carina
    Linköping University.
    Sund Levander, Märta
    Linköping University.
    Improving self-management for persons with Parkinson's disease through education focusing on management of daily life: patients' and relatives' experience of the Swedish National Parkinson School.2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 19-20, p. 3719-3728Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVE: The two folded aim of this study was firstly to identify and describe experiences valuable for managing daily life after participation in the NPS self-management intervention. The second part was to explore the applicability of the Self- and family management framework by Grey and colleagues for persons with Parkinson's Disease and their relatives.

    BACKGROUND: The impact of PD is evident on the lives of both patients and relatives. The National Parkinson School (NPS) is a Swedish self-management program designed for patients and relatives, aiming at teaching strategies helpful for the ability of self-management, in order to promote life satisfaction.

    DESIGN: Qualitative explorative with inductive and deductive analysis.

    METHODS: Five group discussions with NPS participants were audio-recorded. Verbatim transcriptions were analysed inductively with thematic analysis according to Braun and Clarke, and the findings were then applied deductively to the existing model for patients with chronic disease.

    RESULTS: Through the first step of inductive analysis three themes capturing the meaning, value and experience of being a participant at the NPS were identified: Exchanging experiences and feeling support, Adjustment and acceptance of PD for managing daily life, and Promoting life satisfaction. The deductive analysis applied the inductive findings to the Self-and family management framework of chronically ill to explore the fit to persons with PD and relatives attending the NPS program.

    CONCLUSIONS: The NPS program is a promising approach for helping persons with PD and their relatives to achieve better self-management of disease and improved life satisfaction. Further evaluations of program outcomes in clinical practice are warranted.

    RELEVANCE OF CLINICAL PRACTICE: Self-management programs like the NPS is a promising approach in facilitating a positive mind-set and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better. This article is protected by copyright. All rights reserved.

  • 94.
    Hellström, A
    et al.
    Linnaeus University.
    Hagell, Peter
    Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. 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.
    Broström, A
    Jönköping University & Linköping University.
    Ulander, M
    Linköping University.
    Ņrestedt, K
    Linnaeus University.
    Initial psychometric testing of the sleep condition indicator in a Swedish context2017In: Sleep Medicine, ISSN 1389-9457, E-ISSN 1878-5506, Vol. 40, Supplement 1, p. 129-130Article in journal (Refereed)
  • 95.
    Hellström, Amanda
    et al.
    Linnaeus 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.
    Broström, Anders
    Jönköping University.
    Ulander, Martin
    Linköping University.
    Luik, Annemarie I
    University of Oxford.
    Espie, Colin A
    University of Oxford.
    Årestedt, Kristofer
    Linnaeus University.
    A classical test theory evaluation of the sleep condition indicator accounting for the ordinal nature of item response data2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 3Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Insomnia symptoms are common among young adults and affect about 5% to 26% of 19 to 34-year-olds. In addition, insomnia is associated with poor mental health and may affect daily performance. In research, as well as in clinical practice, sleep questionnaires are used to screen for and diagnose insomnia. However, most questionnaires are not developed according to current DSM-5 diagnostic criteria. An exception is the recently developed Sleep Condition Indicator (SCI), an eight-item scale screening for insomnia.

    AIM: The aim of this study was to perform a Classical Test Theory (CTT) based psychometric evaluation of the SCI in a sample of Swedish university students, by taking the ordinal nature of item level data into account.

    METHODS: The SCI was translated into Swedish and distributed online to undergraduate students at three Swedish universities, within programs of health, psychology, science or economy. Of 3673 invited students, 634 (mean age 26.9 years; SD = 7.4) completed the questionnaire that, in addition to the SCI, comprised other scales on sleep, stress, lifestyle and students' study environment. Data were analyzed according to CTT investigating data completeness, item homogeneity and unidimensionality.

    RESULTS: Polychoric based explorative factor analysis suggested unidimensionality of the SCI, and internal consistency was good (Cronbach's alpha, 0.91; ordinal alpha, 0.94). SCI scores correlated with the Insomnia Severity Index (-0.88) as well as with sleep quality (-0.85) and perceived stress (-0.50), supporting external construct validity.

    CONCLUSIONS: These observations support the integrity of the of the SCI. The SCI demonstrates sound CTT-based psychometric properties, supporting its use as an insomnia screening tool.

  • 96.
    Hellström, Amanda
    et al.
    Blekinge Institute of Technology.
    Hagell, Peter
    Lund University.
    Fagerström, Cecilia
    Blekinge Institute of Technology.
    Willman, Ania
    Blekinge Institute of Technology.
    Measurement properties of the Minimal Insomnia Symptom Scale (MISS) in an elderly population in Sweden2010In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 10, article id 84Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Insomnia is common among elderly people and associated with poor health. The Minimal Insomnia Symptom Scale (MISS) is a three item screening instrument that has been found to be psychometrically sound and capable of identifying insomnia in the general population (20-64 years). However, its measurement properties have not been studied in an elderly population. Our aim was to test the measurement properties of the MISS among people aged 65 + in Sweden, by replicating the original study in an elderly sample.

    METHODS: Data from a cross-sectional survey of 548 elderly individuals were analysed in terms of assumptions of summation of items, floor/ceiling effects, reliability and optimal cut-off score by means of ROC-curve analysis and compared with self-reported insomnia criteria.

    RESULTS: Corrected item-total correlations ranged between 0.64-0.70, floor/ceiling effects were 6.6/0.6% and reliability was 0.81. ROC analysis identified the optimal cut-off score as ≥ 7 (sensitivity, 0.93; specificity, 0.84; positive/negative predictive values, 0.256/0.995). Using this cut-off score, the prevalence of insomnia in the study sample was 21.7% and most frequent among women and the oldest old.

    CONCLUSIONS: Data support the measurement properties of the MISS as a possible insomnia screening instrument for elderly persons. This study make evident that the MISS is useful for identifying elderly people with insomnia-like sleep problems. Further studies are needed to assess its usefulness in identifying clinically defined insomnia.

  • 97.
    Henriksson, Anette
    et al.
    Ersta Sköndal University College.
    Hudson, Peter
    Australien.
    Öhlen, Joakim
    Ersta Sköndal University College.
    Thomas, Kristina
    Australien.
    Holm, Maja
    Ersta Sköndal University College.
    Carlander, Ida
    Karolinska Institutet.
    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.
    Årestedt, Kristofer
    Linnaeus University.
    Use of the preparedness for caregiving scale in palliative care: a Rasch evaluation study2015In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 50, no 4, p. 533-541Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care.

    OBJECTIVES: The aim of this study was to evaluate the measurement properties of the original English version as well as a Swedish version of the Preparedness for Caregiving Scale (PCS).

    METHODS: The sample (n=674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model.

    RESULTS: Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex were detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index.

    CONCLUSION: The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions.

  • 98.
    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.

  • 99.
    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.

  • 100.
    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.

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