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Illness-related burden, personal resources and need for support in patients with acromegaly: Results of a focus group analysis.
Siegel, Sonja; Kirstein, Cedric Fabian; Schröder, Bernadette; Unger, Nicole; Kreitschmann-Andermahr, Ilonka.
Afiliación
  • Siegel S; Department of Neurosurgery and Spine Surgery, University Hospital, University of Duisburg-Essen, Hufelandstrasse 55, 45147 Essen, Germany.
  • Kirstein CF; Department of Neurosurgery and Spine Surgery, University Hospital, University of Duisburg-Essen, Hufelandstrasse 55, 45147 Essen, Germany.
  • Schröder B; Department of Neurosurgery and Spine Surgery, University Hospital, University of Duisburg-Essen, Hufelandstrasse 55, 45147 Essen, Germany.
  • Unger N; Department of Endocrinology, Diabetes and Metabolism, University Hospital, University of Duisburg-Essen, Hufelandstr. 55, 45147 Essen, Germany.
  • Kreitschmann-Andermahr I; Department of Neurosurgery and Spine Surgery, University Hospital, University of Duisburg-Essen, Hufelandstrasse 55, 45147 Essen, Germany. Electronic address: ilonka.kreitschmann@uk-essen.de.
Growth Horm IGF Res ; 60-61: 101422, 2021.
Article en En | MEDLINE | ID: mdl-34404019
OBJECTIVE: It was the aim of this study to evaluate illness-related burdens and support needs of patients with acromegaly to identify hitherto unadressed research questions and to open up avenues for improvements in patient care. This was done by using the focus group approach as a qualitative research method. DESIGN: Seven patients with acromegaly took part in a focus group moderated by an external medical communication specialist. The discourse focused on topics such as impact of the illness on everyday life, support needs and personal resources. The discussion was recorded and transcribed and analyzed by qualitative content analysis. RESULTS: Participants reported a huge impact of acromegaly on daily life, ranging from time expenditure for managing their illness, to bodily and mental sequelae and strain caused by physical disfigurement. Patients' coping strategies included family support, physical activities and humor. The participants wished for a sound patient-doctor relationship, more interdisciplinary and holistic treatment, medical rehabilitation services with special knowledge on acromegaly-related morbidity, a stable contact person in the medical process and reliable information material for themselves and their relatives. CONCLUSIONS: The results provide multi-facetted impressions of the overwhelming impact of acromegaly and unmet support needs of the afflicted patients. Further quantitative research is necessary to examine the generalisibility of the present results in order to implement tailored support measures. We suggest to develop standardized questionnaires to explore the prevalence and severity of the addressed problems in a large patient sample and to establish screening instruments to monitor disease burden in clinical practice.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Acromegalia / Grupos Focales / Costo de Enfermedad / Necesidades y Demandas de Servicios de Salud Tipo de estudio: Observational_studies / Prognostic_studies / Qualitative_research Aspecto: Patient_preference Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Growth Horm IGF Res Asunto de la revista: ENDOCRINOLOGIA Año: 2021 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Reino Unido

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Acromegalia / Grupos Focales / Costo de Enfermedad / Necesidades y Demandas de Servicios de Salud Tipo de estudio: Observational_studies / Prognostic_studies / Qualitative_research Aspecto: Patient_preference Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Growth Horm IGF Res Asunto de la revista: ENDOCRINOLOGIA Año: 2021 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Reino Unido