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  • 1
    Online Resource
    Online Resource
    Submaximal Exercise Capacity in Juvenile Dermatomyositis after Longterm Disease: The Contribution of Muscle, Lung, and Heart Involvement
    The Journal of Rheumatology ; 2017
    In:  The Journal of Rheumatology Vol. 44, No. 6 ( 2017-06), p. 827-834
    Details
    In: The Journal of Rheumatology, The Journal of Rheumatology, Vol. 44, No. 6 ( 2017-06), p. 827-834
    Abstract: To compare submaximal exercise capacity in patients with juvenile dermatomyositis (JDM) with controls, and analyze contributions of muscle, heart, and lung impairment in patients. Methods. Fifty-nine patients with JDM, with a mean 16.9 years after symptom onset, and 59 sex- and age-matched controls completed a 6-min walk test (6MWT) and a timed up and go (TUG) test. Muscle function, disease activity/damage, and health-related quality of life (HRQOL) were assessed by validated tools; heart function by echocardiography and electrocardiography; and lung function by spirometry, DLCO, and body plethysmography. A thoracic high-resolution computed tomography (HRCT) scan and magnetic resonance imaging of the thighs were completed in patients. Results. The 6MWT distance (6MWD) was 592 ± 81 m in patients versus 649 ± 79 m in controls (p 〈 0.001), and 563 ± 75 m in active versus 622 ± 76 m in inactive JDM (p = 0.004). The TUG time was 13.1 ± 2.1 s in patients versus 12.3 ± 2.0 s in controls (p = 0.034), and 13.7 ± 2.2 s in active versus 12.5 ± 1.8 s in inactive JDM (p = 0.028). No statistically significant difference was found between inactive JDM and controls in either test. In patients, the Childhood Myositis Assessment Score influenced the 6MWD and TUG time the most, followed by a low DLCO and HRCT pathology in the 6MWT and forced vital capacity in the TUG test. Medical Outcomes Study Short Form-36 physical component summary correlated strongly with both tests. Conclusion. Submaximal exercise capacity was reduced in patients with JDM, particularly those with active disease. This reduction was associated with muscle and lung dysfunction and poorer HRQOL.
    Type of Medium: Online Resource
    ISSN: 0315-162X , 1499-2752
    URL: Article
    DOI: 10.3899/jrheum.160997
    RVK:
    XA 10000
    Language: English
    Publisher: The Journal of Rheumatology
    Publication Date: 2017
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  • 2
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    Online Resource
    Physical Functioning, Pain, and Health‐Related Quality of Life in Adults With Juvenile Idiopathic Arthritis: A Longitudinal 30‐Year Followup Study
    Wiley ; 2018
    In:  Arthritis Care & Research Vol. 70, No. 5 ( 2018-05), p. 741-749
    Details
    In: Arthritis Care & Research, Wiley, Vol. 70, No. 5 ( 2018-05), p. 741-749
    Abstract: To describe physical functioning, pain, and health‐related quality of life ( HRQ oL) in adults with juvenile idiopathic arthritis ( JIA ), investigate changes over time, and identify predictors of poorer HRQ oL after 30 years of disease. Methods Patients (n = 176) clinically examined after 15 years were reassessed using the Health Assessment Questionnaire disability index ( HAQ DI ), the visual analog scale pain subscale ( VAS pain), and the Medical Outcomes Study Short Form 36 ( SF ‐36) after 23 years and 30 years. Patients with signs of active disease after a minimum of 15 years were clinically examined again at 30 years. Patients were compared to matched controls. Results At the 30‐year followup, 82 patients (47%) had HAQ DI scores 〉 0, and the median VAS pain score in patients was 0.6 (range 0–10). Patients had lower SF ‐36 physical component summary ( PCS ) scores compared with controls ( P 〈 0.001), and this was evident for patients both with and without clinical remission ( P ≤ 0.01). No group differences were found in SF ‐36 mental component summary scores. Patients also scored worse than controls on all SF ‐36 subscales ( P ≤ 0.01) except mental health. PCS scores worsened significantly between the 15‐ and 30‐year followup time points ( P = 0.001). Worse HAQ DI , VAS pain, and patient's global assessment of well‐being scores, and receiving disability/social living allowance at 30 years, were correlated with lower PCS scores. Worse HAQ DI , patient's global assessment of well‐being, and VAS fatigue scores at 15‐year followup predicted lower PCS scores at 30‐year followup. Conclusion JIA had a detrimental effect on physical HRQ oL as measured by the PCS of the SF ‐36. The strongest correlates were physical disability, pain, fatigue, well‐being, and receiving disability/social living allowance.
    Type of Medium: Online Resource
    ISSN: 2151-464X , 2151-4658
    URL: Issue
    URL: Article
    DOI: 10.1002/acr.v70.5
    DOI: 10.1002/acr.23327
    RVK:
    XA 30325
    Language: English
    Publisher: Wiley
    Publication Date: 2018
    detail.hit.zdb_id: 2016713-1
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  • 3
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    Online Resource
    Longitudinal Health Status from Early Disease to Adulthood and Associated Prognostic Factors in Juvenile Idiopathic Arthritis
    The Journal of Rheumatology ; 2019
    In:  The Journal of Rheumatology Vol. 46, No. 10 ( 2019-10), p. 1335-1344
    Details
    In: The Journal of Rheumatology, The Journal of Rheumatology, Vol. 46, No. 10 ( 2019-10), p. 1335-1344
    Abstract: To describe the longitudinal health status from childhood to adulthood in patients with juvenile idiopathic arthritis (JIA), compare outcomes after 19 years with those of controls, and identify early predictors of physical functioning, pain, and physical health-related quality of life (HRQOL). Methods. Between 1995–2003, 96 patients with JIA (mean 6.1 ± 4.0 yrs, 67% female) were assessed within 18 months of diagnosis and every 6 months for the next 3 years with measures of JIA disease activity, physical functioning, pain, fatigue, and well-being. They were reassessed a mean of 18.9 ± 1.5 years later (mean age 25.1 ± 4.2 yrs) with measures of physical disability [Health Assessment Questionnaire–Disability Index (HAQ-DI)], pain, fatigue, well-being (visual analog scale), and physical and mental health-related quality of life (HRQOL; Medical Outcomes Study 12-item Short Form Health Survey, version 2). Results. During the first 3 years, physical disability improved (p 〈 0.001) and the proportion of patients reporting best possible well-being increased (p = 0.013), while pain and fatigue did not change. At 3- and 19-year followups, patients had similar levels of physical disability, well-being, and pain, but fatigue increased (p = 0.016) and the number of patients with HAQ-DI = 0 decreased (p = 0.001). After 19 years, patients had worse pain and physical HRQOL than controls (p 〈 0.001). Pain, active joints, and physical disability during the first 3 years were associated with more disability and pain and worse physical HRQOL after 19 years (p 〈 0.001–0.047). Conclusion. Patients with JIA reported similar physical functioning, well-being, and pain at 3- and 19-year followups, but more fatigue after 19 years. Patients also had worse health status than controls after 19 years. Pain, active joints, and physical disability were early predictors of unfavorable outcomes.
    Type of Medium: Online Resource
    ISSN: 0315-162X , 1499-2752
    URL: Article
    DOI: 10.3899/jrheum.180948
    RVK:
    XA 10000
    Language: English
    Publisher: The Journal of Rheumatology
    Publication Date: 2019
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  • 4
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    Online Resource
    Personally Generated Quality of Life Outcomes in Adults With Juvenile Idiopathic Arthritis
    The Journal of Rheumatology ; 2022
    In:  The Journal of Rheumatology Vol. 49, No. 10 ( 2022-10), p. 1138-1145
    Details
    In: The Journal of Rheumatology, The Journal of Rheumatology, Vol. 49, No. 10 ( 2022-10), p. 1138-1145
    Abstract: To explore quality of life (QOL) using the individualized Patient Generated Index (PGI) in young adults who were diagnosed with juvenile idiopathic arthritis (JIA) in childhood, and to examine associations between PGI ratings and standardized health-related outcome measures. Methods Patients (N = 79, mean age 25.1 [SD 4.2] yrs, 72% female) completed the PGI and the standardized measures: Health Assessment Questionnaire–Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL [HRQOL] ), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analog scale for fatigue. Information on morning stiffness, medications, and demographics was also collected. Patients were compared to 79 matched controls. Results The most frequently nominated areas of importance for patients’ personally generated QOL (assessed by PGI) were physical activity (n = 38, 48%), work/school (n = 31, 39%), fatigue (n = 29, 37%) and self-image (n = 26, 33%). Nomination of physical activity was associated with older age, morning stiffness, and more pain interference. Nomination of fatigue was associated with current use of disease-modifying antirheumatic drugs, whereas nomination of self-image was associated with polyarticular course JIA and pain interference. Nomination of work/school was not associated with other factors. Higher PGI scores (indicating better QOL) correlated positively with all SF-12 subscales except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. Compared to controls, patients had more pain, poorer physical HRQOL, and less participation in full-time work or school. Conclusion Physical activity, work/school, fatigue, and self-image were frequently nominated areas affecting QOL in young adults with JIA. The PGI included aspects of QOL not covered in standardized measures.
    Type of Medium: Online Resource
    ISSN: 0315-162X , 1499-2752
    URL: Article
    DOI: 10.3899/jrheum.211245
    RVK:
    XA 10000
    Language: English
    Publisher: The Journal of Rheumatology
    Publication Date: 2022
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  • 5
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    Online Resource
    Quality of life in adults with juvenile‐onset dermatomyositis: A case–control study
    Wiley ; 2012
    In:  Arthritis Care & Research Vol. 64, No. 7 ( 2012-07), p. 1020-1027
    Details
    In: Arthritis Care & Research, Wiley, Vol. 64, No. 7 ( 2012-07), p. 1020-1027
    Abstract: To compare quality of life in adults diagnosed with juvenile dermatomyositis (DM) with that of matched controls, and to analyze the association with other disease parameters in patients. Methods Thirty‐nine patients with juvenile DM (ages ≥18 years) were clinically examined and compared with 39 age‐ and sex‐matched controls. Global and health‐related quality of life (HRQOL) were assessed by the Norwegian version of the Quality of Life Scale (QOLS‐N) and the Short Form 36 (SF‐36), respectively. For patients, disease parameters were assessed by the Disease Activity Score (DAS), Health Assessment Questionnaire (HAQ), and Myositis Damage Index (MDI). Results Compared to the controls, patients with juvenile DM assessed a median of 22.2 years (range 1.8–36.1 years) after disease onset had reduced HRQOL in general health ( P = 0.009) measured by the SF‐36. In patients, a moderate correlation was found between the physical component summary (PCS) score and the DAS (r s = −0.422) and MDI (r s = −0.381), and a strong correlation was found between the PCS score and the HAQ (r s = −0.516). There were no differences between patients and controls in the SF‐36 mental component summary scores. Patients and controls had similar total scores of the QOLS‐N, but differences existed within certain items. Conclusion Adult patients with juvenile DM had, compared to controls, reduced HRQOL in general health measured by the SF‐36, but not in the other subscales of the SF‐36 or in global quality of life measured by the QOLS‐N. An association was found between disease parameters and reduced HRQOL in the physical domains.
    Type of Medium: Online Resource
    ISSN: 2151-464X , 2151-4658
    URL: Issue
    URL: Article
    DOI: 10.1002/acr.v64.7
    DOI: 10.1002/acr.21637
    RVK:
    XA 30325
    Language: English
    Publisher: Wiley
    Publication Date: 2012
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  • 6
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    Online Resource
    Treatment Satisfaction With and Adherence to Disease‐Modifying Antirheumatic Drugs in Adult Patients With Juvenile Idiopathic Arthritis
    Wiley ; 2021
    In:  Arthritis Care & Research Vol. 73, No. 2 ( 2021-02), p. 221-231
    Details
    In: Arthritis Care & Research, Wiley, Vol. 73, No. 2 ( 2021-02), p. 221-231
    Abstract: To examine medication satisfaction and adherence and their relationships to disease variables and health‐related quality of life (HRQoL) in adults with juvenile idiopathic arthritis (JIA). Methods Patients (n = 96, mean age 25 years, 67% female) completed questionnaires about their health status 19 years after disease onset. Patients receiving biologic disease‐modifying antirheumatic drugs (bDMARDs) or methotrexate (MTX) were assessed with the 8‐item Morisky Medication Adherence Scale (MMAS‐8) and the Treatment Satisfaction Questionnaire for Medication (TSQM), including dimensions of effectiveness, side effects, convenience, and global satisfaction. Results DMARDs were received by 52 patients (54%) (mean age 25 years, 75% female), of which 28 received MTX and 37 received bDMARDs. Patients receiving combination therapy of MTX and bDMARDs (n = 15) reported higher satisfaction with bDMARDs than MTX in the dimensions of side effects and global satisfaction (mean ± SD 92.9 ± 15.5 versus 56.2 ± 30.9, and mean ± SD 67.6 ± 19.8 versus 47.1 ± 21.7; P 〈 0.001 and P = 0.016, respectively). Patients receiving either bDMARDs (n = 22) or MTX (n = 13) reported higher satisfaction with bDMARDs than MTX for the dimensions of effectiveness and global satisfaction (mean ± SD 78.7 ± 15.4 versus 60.2 ± 19.9, and mean ± SD 73.6 ± 17.7 versus 52.3 ± 23.9; P = 0.004 and P = 0.005, respectively). Nearly one‐half of patients (46%) reported low adherence (MMAS‐8 score 〈 6) and 25% high adherence (MMAS‐8 score = 8). Higher levels of pain, psychological distress, more active joints, and current MTX use were the strongest correlates of lower medication satisfaction. Perceived medication effectiveness and global satisfaction correlated positively with physical and mental HRQoL. Conclusion Patients with JIA were more satisfied with bDMARDs than MTX, and 46% reported low adherence. Higher medication satisfaction was associated with better HRQoL.
    Type of Medium: Online Resource
    ISSN: 2151-464X , 2151-4658
    URL: Issue
    URL: Article
    DOI: 10.1002/acr.v73.2
    DOI: 10.1002/acr.24113
    RVK:
    XA 30325
    Language: English
    Publisher: Wiley
    Publication Date: 2021
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  • 7
    Online Resource
    Online Resource
    Long-term muscular outcome and predisposing and prognostic factors in juvenile dermatomyositis: A case-control study
    Wiley ; 2010
    In:  Arthritis Care & Research Vol. 62, No. 8 ( 2010-03-30), p. 1103-1111
    Details
    In: Arthritis Care & Research, Wiley, Vol. 62, No. 8 ( 2010-03-30), p. 1103-1111
    Type of Medium: Online Resource
    ISSN: 2151-464X
    URL: Article
    DOI: 10.1002/acr.20203
    RVK:
    XA 30325
    Language: English
    Publisher: Wiley
    Publication Date: 2010
    detail.hit.zdb_id: 2016713-1
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