Administration Burden Associated With Recombinant Human Growth Hormone Treatment: Perspectives of Patients and Caregivers1

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Patients treated with recombinant human growth hormone (rhGH) for growth hormone disorders follow a challenging treatment schedule. This study assessed patient and caregiver experiences with rhGH therapy treatment regimens. Patients 13 years or older with growth hormone deficiency and caregivers completed Web-based surveys. A total of 61 patients and 239 caregivers participated. Storage of rhGH was considered burdensome by more than a third. More than 51% considered storage “somewhat more” to “much more of a burden” relative to the burden while not traveling. “Away from home or traveling” was the most frequently endorsed reason for missing a dose. rhGH treatment while traveling is challenging because of rhGH storage burden.

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Study Design

A single-assessment, cross-sectional, Internet-based survey study conducted in August 2010 explored GH-treated patient and caregiver practices, experiences, and perceptions toward rhGH treatment. Two surveys were developed: a version for patients 13 years and older with a GH disorder and another version for caregivers of a patient with a GH disorder. After receiving approval from the Western Institutional Review Board (Olympia, WA), surveys were administered via Internet by Harris Interactive

Sample Size and Characteristics

E-mail invitations were sent to 2,007 members who potentially met the criteria for this study based on their disorder and with an e-mail address on MAGIC's mailing list database. Although 588 potential respondents entered the survey, 212 did not meet inclusion criteria, and another 46 did not complete the survey. Ultimately, our target sample size of 300 respondents was met, and 61 patients and 239 caregivers successfully completed their respective survey.

Patient and caregiver demographic and

Discussion

In this survey, refrigeration of rhGH products, especially while traveling, was perceived as considerably burdensome by both patients and caregivers. To a lesser extent, reconstitution also imposed a burden. In fact, most patients and caregivers agreed with the statement, “I wish I could store rhGH outside the refrigerator for longer periods of time,” and more than half of caregivers and almost half of patients agreed with the statement, “I wish I did not have to mix my child's GH medication

Acknowledgments

This study was funded by Novo Nordisk Inc. The authors wish to thank Chioma Smith, MPH, HEOR Researcher at Novo Nordisk Inc., for her thoughtful comments throughout the editorial process. We also like to thank Julie Powers, MHS, Consultant at IMS Consulting Group, for her invaluable assistance in developing this article.

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    Identification of previous presentation: Details of the study and some of the study results presented in this article were presented at the 2011 Pediatric Endocrinology Nursing Society Convention.

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