Contributions
Abstract: P773
Type: Poster
Abstract Category: Therapy - symptomatic - Quality of life
Aim: Neuro-QoL provides a clinically relevant and psychometrically robust tool for assessment of quality of life (QoL) in both adults and children with common neurological disorders. We report here the protocol for the translation and cultural adaption of a subset of Neuro-QoL item banks into Swedish and the integration strategy for the Swedish Neuro-registries/Multiple Sclerosis registry (NEUROreg/MSreg).
Method: A multidisciplinary team including patient representation was established. Six Neuro-QoL item banks were selected representing the needs for patient reported data collection in MS. These included two full item banks (cognition and fatigue) and four short-form item banks (upper and lower extremity function, positive affect, satisfaction, and ability to participate in social roles and activities). A protocol for the translation and cultural adaptation of the item banks was agreed, which followed the standardised approach outlined by the Neuro-QoL assessment centre. This included two forward translations, one back translation, three reviewers, cognitive debriefing and a finalisation review.
Results: Initial analysis indicates a close agreement with the original items, however some cultural adaption, clarification and updating is required. Terms which might be clear in the English context may not be in the Swedish context for example “work at home” might mean distance work or housework. Questions using topical terms or referring to technology eg “touch tone key-pad” need to be updated regularly or avoided. More fundamental cultural issues also arose such as the extent to which someone would use absolute terminology eg. “my life had purpose” as opposed to “my life felt like it had purpose”.
Conclusion: Subtle differences in meaning between the English and Swedish translations will be explored via expert review and a thorough cognitive debriefing process with MS patients from two regions in Sweden. Item banking will contribute to the integration of the patient"s perspective into the quality data registry and lead to a better understanding of quality of life in MS. In the future, comparisons of PRO registry data will be possible both nationally and internationally. Results and reflections from the cultural adaption process will be reported.
Disclosure:
John Chaplin - Nothing to disclose.
Karin Lycke - Nothing to disclose.
Lillemor Egertz - Nothing to disclose.
Eva Helmersson - Nothing to disclose.
Leszek Stawiarz - Nothing to disclose.
Jan Hillert - has received honoraria for serving on advisory boards for Biogen and Novartis and speaker"s fees from BiogenIdec, Merck-Serono, Bayer-Schering, Teva and Sanofi-Aventis. He has served as P.I. for projects, or received unrestricted research support from, Biogen, Merck-Serono, Sanofi-Genzyme and Novartis.
Abstract: P773
Type: Poster
Abstract Category: Therapy - symptomatic - Quality of life
Aim: Neuro-QoL provides a clinically relevant and psychometrically robust tool for assessment of quality of life (QoL) in both adults and children with common neurological disorders. We report here the protocol for the translation and cultural adaption of a subset of Neuro-QoL item banks into Swedish and the integration strategy for the Swedish Neuro-registries/Multiple Sclerosis registry (NEUROreg/MSreg).
Method: A multidisciplinary team including patient representation was established. Six Neuro-QoL item banks were selected representing the needs for patient reported data collection in MS. These included two full item banks (cognition and fatigue) and four short-form item banks (upper and lower extremity function, positive affect, satisfaction, and ability to participate in social roles and activities). A protocol for the translation and cultural adaptation of the item banks was agreed, which followed the standardised approach outlined by the Neuro-QoL assessment centre. This included two forward translations, one back translation, three reviewers, cognitive debriefing and a finalisation review.
Results: Initial analysis indicates a close agreement with the original items, however some cultural adaption, clarification and updating is required. Terms which might be clear in the English context may not be in the Swedish context for example “work at home” might mean distance work or housework. Questions using topical terms or referring to technology eg “touch tone key-pad” need to be updated regularly or avoided. More fundamental cultural issues also arose such as the extent to which someone would use absolute terminology eg. “my life had purpose” as opposed to “my life felt like it had purpose”.
Conclusion: Subtle differences in meaning between the English and Swedish translations will be explored via expert review and a thorough cognitive debriefing process with MS patients from two regions in Sweden. Item banking will contribute to the integration of the patient"s perspective into the quality data registry and lead to a better understanding of quality of life in MS. In the future, comparisons of PRO registry data will be possible both nationally and internationally. Results and reflections from the cultural adaption process will be reported.
Disclosure:
John Chaplin - Nothing to disclose.
Karin Lycke - Nothing to disclose.
Lillemor Egertz - Nothing to disclose.
Eva Helmersson - Nothing to disclose.
Leszek Stawiarz - Nothing to disclose.
Jan Hillert - has received honoraria for serving on advisory boards for Biogen and Novartis and speaker"s fees from BiogenIdec, Merck-Serono, Bayer-Schering, Teva and Sanofi-Aventis. He has served as P.I. for projects, or received unrestricted research support from, Biogen, Merck-Serono, Sanofi-Genzyme and Novartis.