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. 2016 Feb 25;2(1):FSO82.
doi: 10.4155/fso.15.82. eCollection 2016 Mar.

Stories of experiences of care for growth hormone deficiency: the CRESCERE project

Maria G Marini  1 , Paola Chesi  1 , Laura Mazzanti  2 , Laura Guazzarotti  3 , Teresa D Toni  4 , Maria C Salerno  5 , Annunziata Officioso  5 , Maria Parpagnoli  6 , Cristina Angeletti  7 , Maria F Faienza  8 , Maria L Iezzi  9 , Tommaso Aversa  10 , Cinzia Sacchetti  11
Affiliations

Stories of experiences of care for growth hormone deficiency: the CRESCERE project

Maria G Marini et al. Future Sci OA. .

Abstract

Aims: Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy.

Methods: Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions.

Results: Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues.

Conclusion: Narratives found that communication issues could decrease adherence and influence the physicians' clinical practice.

Keywords: Narrative Medicine; growth hormone; illness; story; therapy.

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Conflict of interest statement

Financial & competing interests disclosure The project has been realized under the unconditional support of Ferring Italia. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.

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