Entwicklung der deutschen Version der Patientenzufriedenheits-Skala (SASC) für den Einsatz bei Patienten nach Schlaganfall

Nolte, Christian H.; Malzahn, Uwe; Rakow, A.; Grieve, Andy; Wolfe, Charles D.A.; Endres, M; Heuschmann, P. U.

doi:10.1055/s-0029-1245350

Cited by 6 publications

(2 citation statements)

References 4 publications

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“…All analyses were performed using IBM SPSS Version 22 (Ehningen, Germany) and SAS, version 9.3 (SAS Institute Inc, Cary, NC, USA). According to previous studies [ 10 ] and with regard to the number of patients seen at FAZIT, the number of available and suitable cases was calculated. Of the approximately 220 Fabry patients known at our Center 60-70 % of patients do and/or did suffer from pain in adulthood and/or childhood.…”

Section: Methodsmentioning

confidence: 99%

Self-administered version of the Fabry-associated pain questionnaire for adult patients

Magg

Riegler

Wiedmann

et al. 2015

Orphanet J Rare Dis

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BackgroundFabry-associated pain may be the first symptom of Fabry disease (FD) and presents with a unique phenotype including mostly acral burning triggerable pain attacks, evoked pain, pain crises, and permanent pain. We recently developed and validated the first Fabry Pain Questionnaire (FPQ) for adult patients. Here we report on the validation of the self-administered version of the FPQ that no longer requires a face-to-face interview but can be filled in by the patients themselves allowing more flexible data collection.MethodsAt our Würzburg Fabry Center for Interdisciplinary Treatment, Germany, we have developed the self-administered version of the FPQ by adapting the questionnaire to a self-report version. To do this, consecutive Fabry patients with current or past pain history (n = 56) were first interviewed face-to-face. Two weeks later patients’ self-reported questionnaire results were collected by mail (n = 55). We validated the self-administered version of the FPQ by assessing the inter-rater reliability agreement of scores obtained by supervised administration and self-administration of the FPQ.ResultsThe FPQ contains 15 questions on the different pain phenotypes, on pain development during life with and without therapy, and on impairment due to pain. Statistical analysis showed that the majority of questions were answered in high agreement in both sessions with a mean AC1-statistic of 0.857 for 55 nominal-scaled items and a mean ICC of 0.587 for 9 scores.ConclusionsThis self-administered version of the first pain questionnaire for adult Fabry patients is a useful tool to assess Fabry-associated pain without a time-consuming face-to-face interview but via a self-reporting survey allowing more flexible usage.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-015-0325-7) contains supplementary material, which is available to authorized users.

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Section: Methodsmentioning

confidence: 99%

Self-administered version of the Fabry-associated pain questionnaire for adult patients

Magg

Riegler

Wiedmann

et al. 2015

Orphanet J Rare Dis

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“…Statistical analysis was done using SPSS version 25 (IBM, Ehningen, Germany) and R version 3.6.3 (R Foundation, Vienna, Austria). The sample size was estimated in analogy to our previous study and to other studies [ 12 , 14 ]. Since differences in current pain intensity between the interviews were considered to influence statistical reliability, we a priori determined that only patients with identical entries for current pain intensity at the two time points would be considered for analysis.…”

Section: Methods and Patientsmentioning

confidence: 99%

English version of the self-administered Fabry Pain Questionnaire for adult patients

Jovanović¹,

Klassen

Heuschmann

et al. 2020

Orphanet J Rare Dis

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Background Pain is an early symptom of Fabry disease (FD) and is characterized by a unique phenotype with mainly episodic acral and triggerable burning pain. Recently, we designed and validated the first pain questionnaire for adult FD patients in an interview and a self-administered version in German: the Würzburg Fabry Pain Questionnaire (FPQ). We now report the validation of the English version of the self-administered FPQ (enFPQ). Methods After two forward–backward translations of the FPQ by native German and native English speakers, the enFPQ was applied at The Mark Holland Metabolic Unit, Manchester, UK for validation. Consecutive patients with genetically ascertained FD and current or previous FD pain underwent a face-to-face interview using the enFPQ. Two weeks later, patients filled in the self-administered enFPQ at home. The agreement between entries collected by supervised administration and self-administration of the enFPQ was assessed via Gwet’s AC1-statistics (AC1) for nominal-scaled scores and intraclass correlation coefficient (ICC) for interval-scaled elements. Results Eighty-three FD patients underwent the face-to-face interview and 54 patients sent back a completed self-administered version of the enFPQ 2 weeks later. We found high agreement with a mean AC1-statistics of 0.725 for 55 items, and very high agreement with a mean ICC of 0.811 for 9 items. Conclusions We provide the validated English version of the FPQ for self-administration in adult FD patients. The enFPQ collects detailed information on the individual FD pain phenotype and thus builds a solid basis for better pain classification and treatment in patients with FD.

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Rivermead Assessment of Somatosensory Performance

et al. 2012

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Entwicklung der deutschen Version der Patientenzufriedenheits-Skala (SASC) für den Einsatz bei Patienten nach Schlaganfall

Abstract: The German version of the SASC is a reliable tool to test patient satisfaction in stroke patients in the German language.

Cited by 6 publications

References 4 publications

Self-administered version of the Fabry-associated pain questionnaire for adult patients

Self-administered version of the Fabry-associated pain questionnaire for adult patients

English version of the self-administered Fabry Pain Questionnaire for adult patients

Rivermead Assessment of Somatosensory Performance

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