Author(s)

Rachel Sommer^1*, Monika Bullinger¹, Andreas Pleil², Nelly Mauras³, Judith Ross⁴, Ron Newfield^5,6, Janet Fox², Julia Quitmann¹

¹Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
²Pfizer Inc., San Diego, CA, USA.
³Nemours Children’s Clinic, Jacksonville, FL, USA.
⁴Thomas Jefferson University, Philadelphia, PA, USA.
⁵Rady Children’s Hospital, San Diego, CA, USA.
⁶University of San Diego, San Diego, CA, USA.

Background: To understand what life is like for US children with a diagnosis of Growth Hormone Deficiency or Idiopathic Short Stature, the impact of short stature on Health related Quality of Life (HrQoL) was qualitatively examined and needs for care from the young patients and their parents perspective were identified. Methods: Focus group discussions with 26 American-English speaking and nine American-Spanish speaking children and their parents were conducted, transcribed verbatim and subsequently qualitatively analyzed by two independent raters, using an existing coding guideline, based on the multidimensional HrQoL concept and a special software (VERBI-Software MAXQDA 10). Results: A total of 1313 statements for the English-speaking and 447 statements for the Spanish-speaking families were categorized. In the US, the strongest frequency of mention was found for the HrQoL dimension “Social” across respondents, followed by “Treatment” and “Emotion”. Conclusion: Conducting and analyzing data generated from focus groups ensure that young patients’ experiences of disease are represented in the measure of outcomes for use in clinical trials and patient care.

Short Stature, Quality of Life, Children, Focus Groups

Sommer, R. , Bullinger, M. , Pleil, A. , Mauras, N. , Ross, J. , Newfield, R. , Fox, J. and Quitmann, J. (2016) Talking about Height and Quality of Life: A Content-Analysis of Focus Group Discussions with Short-Statured Children and Their Parents in the US. Open Journal of Endocrine and Metabolic Diseases, 6, 229-241. doi: 10.4236/ojemd.2016.611027.