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  • 1.
    Mattsson, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, Carina
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Mihai, Carina
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Stocker, Juliane
    Department of Rehabilitation, Nijmegen Centre for Evidence Based Practice, Radboud University Medical Centre, Nijmegen.
    Geyh, Szilvia
    Department of Health Sciences and Health Policy, University of Lucerne.
    Stummvoll, Georg
    Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Möller, Bozena
    Sunderby sjukhus, Luleå, Department of Rheumatology, Sunderby Hospital.
    Hesselstrand, Roger
    Department of Rheumatology, Lund University.
    Sandqvist, Gunnel
    Department of Rheumatology, Lund University.
    Draghicescu, Oana
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Gherghe, Ana Maria
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Voicu, Malina
    Research Institute for Quality of Life, Romanian Academy of Science, Bucharest.
    Distler, Oliver
    Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
    Smolen, Josef S.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Stamm, Tanja A.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Personal factors in systemic sclerosis and their coverage by patient-reported outcome measures: A multicentre European qualitative study and literature review2015In: European Journal of Physical and Rehabilitation Medicine, ISSN 1973-9087, E-ISSN 1973-9095, Vol. 51, no 4, p. 405-421Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Systemic Sclerosis (SSc) is an autoimmune disease where thickening of the skin can lead to reduced body function and limitations in activities. Severe forms can also affect and seriously damage inner organs. Patient--centred rehabilitation emphasises considerations of patients' background, experience and behaviour which highlights the need to know if patient--reported outcome measures (PROMs) include such personal factors.AIMS: To identify and describe personal factors in the experiences of functioning and health of persons with SSc and to examine if and to what extent PROMs in SSc--research cover these factors.DESIGN AND POPULATION: Data from a qualitative study with focus group interviews in patients with SSc were analysed and PROMs in SSc--research were identified in a literature review between 2008--2013.SETTING: Outpatient clinics at rheumatology department in four European countries.METHODS: Data from interviews with 63 participants were analysed using a structure of personal factors developed by Geyh et al. Identified PROMs were analysed and linked to main concepts, related to the personal factors, found in the interview data.RESULTS: Nineteen main concepts related to the area "patterns of experience and behaviour" in the personal factor structure, 16 to "thoughts and beliefs", nine to "feelings", one to "motives" and one to "personal history and biography" respectively. Among the 35 PROMs identified, 15 did not cover any of the identified concepts. Concepts within the area of "feelings" were mostly covered by the PROMs. Five of the PROMs covered "patterns of experience and behaviour" while "motives" and "personal history and biography" were not covered at all. Four of the identified PROMs covered concepts within the areas "feelings", "thoughts and beliefs" and "patterns of experience and behaviour" in the same instrument. The Illness Cognition Questionnaire and Illness Behaviour Questionnaire were such PROMs.CONCLUSION: Patterns of experience and behaviour had the highest number of concepts related to personal factors, but few of the PROMs in SSc--research covered these factors. Only some PROMs covered several personal factors areas in the same instrument.CLINICAL REHABILITATION IMPACT: The results would be of value when developing a core set for outcome measurements in SSc.

  • 2.
    Tibaek, Sigrid
    et al.
    Department of Occupational Therapy and Physiotherapy, Rigshospitale, Glostrup.
    Gard, Gunvor
    Division of Physiotherapy, Department of Health Sciences, Lund University.
    Dehlendorff, Christian
    Danish Cancer Society Research Center.
    Iversen, Helle K.
    Department of Neurology, Rigshospitalet.
    Biering-Sorensen, Fin
    Clinic of Spinal Cord Injuries, Rigshospitalet, Glostrup.
    Jensen, Rigmor
    Department of Neurology, Rigshospitalet, Glostrup.
    Can pelvic floor muscle training improve qualityof life in men with mild to moderate post-strokeand lower urinary tract symptoms?2017In: European Journal of Physical and Rehabilitation Medicine, ISSN 1973-9087, E-ISSN 1973-9095, Vol. 53, no 3, p. 416-425Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Lower urinary tract symptoms (LUTS) have a significant impact on quality of life (QoL) in post‑stroke patients.AIM: The aim of this study was to evaluate the effect of pelvic floor muscle training (PFMT) on QoL parameters in men with post‑stroke LUTS.DESIGN: Randomized, controlled and single‑blinded trial.SETTING: Outpatients, University Hospital.POPULATION: Thirty‑one men, median age 68 (interquartile range 60-74) years, with post‑stroke LUTS were included. Thirty participants completed the study.METHODS: The participants randomized to the treatment group were treated in a systematic, controlled and intensive PFMT program over 3 months (12 weekly sessions). The participants randomized to the control group did not receive specific LUTS treatment. The effect was measured on the 36-Item Short Form Health Survey (SF-36) and the Nocturia Quality‑of‑Life (N‑QoL) Questionnaire.RESULTS: The results on SF-36 indicated significant improvement within pre- and post‑test in the domains emotional role (median 77 to 100, P=0.03) and vitality (median 65 to 70, P=0.03) in the treatment group, but not the control group. There were no statistically significant differences between groups at pre‑test, post‑test or 6-month follow‑up. The results on N‑QoL indicated statistically significant differences between pre- and post‑test in the bother/concern domain in both groups and in sleep/energy for the control group, but not the treatment group. There were no statistically significant differences between groups.CONCLUSIONS: PFMT may improve the emotional health and vitality domains of QoL in men with mild to moderate post‑stroke and LUTS; however the improvements in the treatment group were not significantly better than for the control group. PFMT did not improve nocturia‑related QoL.CLINICAL REHABILITATION IMPACT: This study is the first to evaluate the effect of PFMT on QoL parameters in men with mild to moderate post‑stroke and LUTS. The results indicate some short‑term effect on SF-36 but none on N‑QoL. However, further studies with larger sample sizes and with less restrictive inclusion and exclusion criteria are requested.

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