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  • 1. Bengtsson Tops, Anita
    et al.
    Hansson, Lars
    Sandlund, Mikael
    Bjarnason, Olafur
    Korkeila, Jyrki
    Merinder, Lars
    Nilsson, Liselotte
    Sørgaard, Knut Wollo
    Vinding, Hanne R.
    Middelboe, Thomas
    Subjective versus interviewer assessment of global quality of life among persons with schizophrenia living in the community: a Nordic multicentre study2005Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 14, nr 1, s. 221-229Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Few studies have investigated differences between subjective and externally assessed quality of life in individuals with a severe mental illness. In a sample of 387 patients with schizophrenia living in the community the present study investigated the association between subjective and interviewer-rated quality of life, clinical and sociodemographic factors related to the two assessments, and if discrepancies in the assessments were related to any clinical or social features of the patients.

    Method: The study was a Nordic multicentre study with a cross-sectional design. Instruments used were the Lancashire Quality of Life Profile, the Brief Psychiatric Rating Scale, the Interview Schedule for Social Interaction, Camberwell Assessment of Needs and General Assessment of Functioning.

    Results: The correlation between subjective and interviewer-rated quality of life was moderate (ICC=0.33). More severe affective symptoms, fewer emotional relations and a lower monthly income were related to poorer subjectively rated quality of life but in a stepwise multiple regression analysis accounted for only 14.1 of the variance. Poorer interviewer-rated quality of life was mainly related to a more severe psychopathology but also to a lower monthly income, fewer emotional relations and not being employed. Together these factors accounted for 45.5 of the variance. A greater discrepancy between the subjective and the interviewer rating was found in patients with less affective symptoms, unemployment, and a better social network.

    Conclusion: Only a moderate correlation between subjective and interviewer-assessed global quality of life was found, implying that the sources of assessment differed, as was also shown in subsequent regression models. It is concluded that both perspectives on the patient's quality of life may be valuable for treatment planning, especially in cases where differences in quality of life assessment related to the patient's psychopathology may be expected.

  • 2.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Testing for unidimensionality using the principal component analysis (PCA)/t test protocol in Rasch analysis: a cautionary note2013Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, nr 1 Suppl., s. 63-64Artikel i tidskrift (Refereegranskat)
  • 3.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Knutsson, Ida
    Lund University.
    Single-item assessment of perceived health in neurological disorders: verbal response categories vs visual analog scale2013Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 22, nr 1 Suppl., s. 116-117Artikel i tidskrift (Refereegranskat)
  • 4.
    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 Index2006Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 15, nr 5, s. 1251-1256Artikel i tidskrift (Refereegranskat)
    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.

  • 5.
    Hagell, Peter
    et al.
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Westergren, Albert
    Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Janelidze, Shorena
    Lund University.
    Hansson, Oskar
    Lund University.
    The Swedish SCOPA-SLEEP for assessment of sleep disorders in Parkinson's disease and healthy controls2016Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, nr 10, s. 2571-2577Artikel i tidskrift (Refereegranskat)
    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.

  • 6.
    Hedov, Gerth
    et al.
    Unit of Paediatrics, Department of Women's and Children's Health, Uppsala University.
    Annerén, Göran
    Unit of Clinical Genetics, Department of Genetics and Pathology, Uppsala University.
    Wikblad, Karin
    Department of Public Health and Caring Sciences, Uppsala University.
    Self-perceived health in Swedish parents of children with Down's syndrome2000Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 9, nr 4, s. 415-422Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In this comparative study, self-perceived health was investigated in 165 parents of 86 children with Down's syndrome (DS), using the Swedish version of the SF-36 questionnaire. Questionnaires were mailed to parents of children with DS in a defined Swedish population. The results were compared with those in a randomised control group of parents from the Swedish SF-36 norm population. Mothers and fathers replied separately. Student's t-test with the Bonferroni correction was used for multiple statistical comparisons. The mothers of children with DS ('DS mothers') had significantly lower, less favourable scores than did the fathers of DS children ('DS fathers') in the Vitality (p < 0.0005) domain. Further, DS mothers spent significantly more time in caring for their child with DS than did the DS fathers (p < 0.0001). DS mothers also had lower scores than the mothers of the control group in the Vitality (p < 0.001) and Mental Health (p < 0.001) domains. DS fathers and control fathers differed significantly in the Mental Health domain (p < 0.002), but not otherwise. In conclusion, DS mothers showed poorer health than their spouses and the control mothers. No differences similar to those found between the DS mothers and DS fathers were observed between control mothers and control fathers.

  • 7.
    Jakobsson, Ulf
    et al.
    Lund University.
    Rahm Hallberg, Ingalill
    Lund University.
    Westergren, Albert
    Lund University.
    Overall and health related quality of life among the oldest old in pain2004Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 13, nr 1, s. 125-136Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: To compare the oldest old (85 years and above) in pain with those with no pain across gender, regarding demographic data, living conditions, social network/support, walking/mobility problems, fatigue, sleeping problems, depressed mood and quality of life (QoL). The aim was also to test how these variables were related to QoL among the oldest old in pain. Methods: The study comprised 1622 people aged 85–105 years, of whom 47% reported pain. SF-12 and the LGC questionnaire were used to measure QoL. Multiple linear regression analysis was used to identify factors associated with QoL. Results: Functional limitations, fatigue, sleeping problem and depressed mood were significantly more prevalent and QoL was significantly lower among those in pain than those not in pain, and among women compared to men. These complaints, along with financial problems, living in sheltered housing and living alone, were associated with low QoL among those in pain. Conclusion: Pain is common among the oldest old and coexists with several other complaints that together negatively affect QoL. By identifying those in pain and coexisting factors, actions can be taken to contribute to QoL, also in late life.

  • 8.
    Løvereide, Lise
    et al.
    Norge.
    Larsen, Jan-Petter
    Norge.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Sjuksköterskeutbildningarna. Högskolan Kristianstad, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan.
    Measuring life satisfaction in people with Parkinson's disease and healthy controls using the satisfaction with life scale2016Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 25, nr Suppl. 1, s. 150-Artikel i tidskrift (Refereegranskat)
  • 9.
    Sjödahl Hammarlund, Catharina
    et al.
    Högskolan Kristianstad, Sektionen för hälsa och samhälle. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Nilsson, Maria H.
    Lund University.
    Idvall, Markus
    Lund University.
    Rosas, Scott R.
    Concept Systems, Inc., Ithaca, NY.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap I. Högskolan Kristianstad, Forskningsmiljön PRO-CARE. Högskolan Kristianstad, Forskningsplattformen Hälsa i samverkan.
    Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson’s disease versus health care professionals: a concept mapping study2014Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 23, nr 6, s. 1687-1700Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background

    Focusing clinical investigations on outcomes that are meaningful from an end-user perspective is central in clinical research, particularly in chronic disorders such as Parkinson’s disease (PD). However, little is known about how end-users such as people with PD (PwPD) and health care professionals (HCPs) view and prioritize therapeutic outcomes.

    Purpose

    To compare the perspectives of PwPD and HCPs regarding prioritized areas for outcome measurement in clinical PD trials.

    Methods

    Concept mapping was used to identify prioritized outcomes (statements) through focus groups (n = 27; 12 PwPD, 12 HCPs, three researchers), statement sorting and importance rating (n = 38; 19 PwPD, 19 HCPs), followed by quantitative (multidimensional scaling, cluster analysis, procrustes analysis) and qualitative analysis.

    Results

    Sorting of 99 statements by PwPD and HCPs yielded 2D maps (PwPD/HCPs stress values, 0.31/0.21) with eight clusters per group. The correlation between raw sorting data of PwPD and HCPs was 0.80, and there was a significant concordance (m12 = 0.53; P < 0.001; i.e., r = 0.68) between the spatial arrangements in their respective maps. Qualitatively, the maps from the two groups represented partially different perspectives. There were no significant differences between PwPD and HCP item importance ratings.

    Conclusion

    Although similarities dominated, there were differences in how the relationships between items were perceived by the two groups, emanating from different perspectives, i.e., the clinical biomedical (“disease”) versus the lived experience (“illness”). This study illustrates the clinical importance of attention to the perspective of PwPD; taking this into account is likely to provide evidence from clinical investigations that are meaningful and interpretable for end-users.

  • 10.
    Sjödahl Hammarlund, Catharina
    et al.
    Department of Health Sciences, Lund University.
    Nilsson, Maria
    Department of Health Sciences, Lund University.
    Hagell, Peter
    Högskolan Kristianstad, Sektionen för hälsa och samhälle, Avdelningen för Hälsovetenskap. Högskolan Kristianstad, Forskningsmiljön PRO-CARE.
    Measuring outcomes in Parkinson's disease: a multi-perspective concept mapping study2012Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 21, nr 3, s. 453-463Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    To identify and develop a conceptual map of prioritized areas and to determine their relative importance for outcome measurement in clinical Parkinson's disease (PD) trials, from the perspectives of health care professionals and people with PD.

    METHOD:

    We used concept mapping, a qualitative/quantitative method consisting of three steps: item generation through focus groups (n = 27; 12 people with PD, 12 health care professionals, 3 researchers), item sorting and rating (n = 38; 19 people with PD, 19 health care professionals), and data analysis (multidimensional scaling, cluster analysis).

    RESULTS:

    Ninety-nine items and eight clusters were generated. Clusters representing Participation; Mobility and motor functioning; Cognitive and executive functioning; and Emotions were the most homogenous. Statements within clusters representing Energy and abilities; Autonomic dysfunctions; Sensory, speech and swallowing problems; and Neuropsychiatric symptoms also related to statements outside their respective clusters. Clusters rated most important were Participation and Mobility and motor functioning, and the highest rated items were quality of life, walking ability, and sleeping problems.

    CONCLUSION:

    By the use of concept mapping, a multi-perspective conceptual map of prioritized aspects for the outcome measurement in PD was defined. These findings provide an initial conceptual basis toward improved outcome measurement priorities in clinical PD trials.

  • 11.
    Westergren, Albert
    et al.
    Division of Gerontology and Caring Sciences, Department of Health Sciences, Faculty of Medicine, Lund University.
    Hagell, Peter
    Division of Gerontology and Caring Sciences, Department of Health Sciences, Faculty of Medicine, Lund University.
    Initial validation of the Swedish version of the London Handicap Scale2006Ingår i: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 15, nr 7, s. 1251-1256Artikel i tidskrift (Refereegranskat)
    Abstract [sv]

    Objective: To adapt and evaluate the unweighted version of the London Handicap Scale (LHS) for use in Sweden.

    Materials & Methods: Respondent burden, linguistic validity and patient perceived relevance was assessed in 16 neurologically ill patients. Internal consistency reliability and construct validity were evaluated among 89 stroke survivors six months after discharge.

    Results: Patients perceived the LHS as relevant and easy to understand and complete. Mean time to complete the questionnaire was 10 min. Cronbach’s alpha reliability was 0.85. The LHS differentiated between patients living at home and in special accommodations. As expected, scores correlated strongly and weakly with indices of related and more remote constructs, respectively. There were no floor-, but large ceiling effects.

    Conclusions: The observations reported here are in accordance with previous studies using the original British LHS and provide initial support for the reliability and validity of the instrument for use in Sweden. However, ceiling effects may limit its usefulness as an outcome measure.

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