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Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia.
Bloemeke, Janika; Sommer, Rachel; Witt, Stefanie; Bullinger, Monika; Nordon, Clementine; Badia, Francisco Javier; González, Felipe Luna; Leiva-Gea, Antonio; Delgado Rufino, Francisco de Borja; Mayoral-Cleries, Fermín; Romero-Sanchiz, Pablo; Clamagirand Saiz, Verónica; Nogueira-Arjona, Raquel; Mohnike, Klaus; Quitmann, Julia.
Afiliación
  • Bloemeke J; Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany. j.bloemeke@uke.de.
  • Sommer R; Center for Psychosocial Medicine, Institute of Health Care Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
  • Witt S; Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany.
  • Bullinger M; Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 | W 26, 20246, Hamburg, Germany.
  • Nordon C; LASER Analytica, Tour CIT 3 rue de l'arrivée, 75015, Paris, France.
  • Badia FJ; LASER Analytica, Tour CIT 3 rue de l'arrivée, 75015, Paris, France.
  • González FL; Unidad de Cirugía Ortopédica y Traumatología, Hospital Universitario Virgen de la Victoria Málaga, Málaga, Spain.
  • Leiva-Gea A; Unidad de Cirugía Ortopédica y Traumatología, Hospital Universitario Virgen de la Victoria Málaga, Málaga, Spain.
  • Delgado Rufino FB; Unidad de Cirugía Ortopédica y Traumatología, Hospital Universitario Virgen de la Victoria Málaga, Málaga, Spain.
  • Mayoral-Cleries F; Unidad de Salud Mental, Hospital Universitario Regional de Málaga, Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain.
  • Romero-Sanchiz P; Unidad de Salud Mental, Hospital Universitario Regional de Málaga, Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain.
  • Clamagirand Saiz V; Departamento de Personalidad, Evaluación y Tratamientos Psicológicos, Universidad de Málaga, Málaga, Spain.
  • Nogueira-Arjona R; Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada.
  • Mohnike K; Unidad de Salud Mental, Hospital Universitario Regional de Málaga, Instituto de Investigación Biomédica de Málaga (IBIMA), Málaga, Spain.
  • Quitmann J; Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada.
Qual Life Res ; 28(9): 2553-2563, 2019 Sep.
Article en En | MEDLINE | ID: mdl-31093848
PURPOSE: Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tested available generic, disease-specific and under development questionnaires for possible use in multinational clinical research. METHODS: A three-step approach was applied. First, a literature review and clinician/expert opinions were used to select relevant PRO questionnaires. Second, focus group discussions, including a group cognitive debriefing for piloting of the questionnaires with children/adolescents with achondroplasia and their parents, were performed in Spain and Germany. Third, a field-test study was conducted to test the psychometric properties of these instruments. RESULTS: Six questionnaires were identified as potentially relevant in children with achondroplasia. In each country, five focus groups including a cognitive debriefing were conducted, and the results narrowed the possibilities to three instruments as most appropriate to assess HRQOL (the generic PedsQL, the height-specific QoLISSY, and the achondroplasia-specific APLES). Results of the field study indicate the QoLISSY and the PedsQL questionnaires to be most appropriate for use in clinical research at this time. CONCLUSION: This selection study is a step forward in assessing the impact of achondroplasia on HRQOL. Of the instruments examined, the QoLISSY and the PedsQL both capture items relevant to children with achondroplasia and have met the psychometric validation criteria needed for use in research. The APLES instrument is a promising tool that should be revisited upon psychometric validation.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Psicometría / Calidad de Vida / Acondroplasia / Medición de Resultados Informados por el Paciente Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Patient_preference Límite: Adolescent / Child / Humans / Male País/Región como asunto: Europa Idioma: En Revista: Qual Life Res Asunto de la revista: REABILITACAO / TERAPEUTICA Año: 2019 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Países Bajos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Psicometría / Calidad de Vida / Acondroplasia / Medición de Resultados Informados por el Paciente Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Patient_preference Límite: Adolescent / Child / Humans / Male País/Región como asunto: Europa Idioma: En Revista: Qual Life Res Asunto de la revista: REABILITACAO / TERAPEUTICA Año: 2019 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Países Bajos