ESPE Abstracts (2018) 89 P-P1-158

Patients and Caregivers Perspectives on a Mobile App that Tracks Adherence and Outcomes in Children with Growth Disorders Treated with Recombinant Human Growth Hormone (r-hGH)

Mark McNallya, Frank Longa, Henry Poskitta, Jorge Cancelab, Ekaterina Koledovac & Javier Sanchez Castrob


aFrontend, Dublin, Ireland; bAres Trading S.A, Coinsins, Switzerland; cMerck KGaA, Darmstadt, Germany


Healthcare professionals (HCPs) receive adherence information on patient Saizen® recombinant human growth hormone (r-hGH) treatment via data wirelessly transferred from the easypodTM electromechanical delivery device to the web-based eHealth platform easypodTM connect. In order to empower patients and caregivers with this information and to provide educational tools, the growlinkTM mobile app is being developed. Concepts for the growlinkTM app were developed using an agile design process following a benchmarking review of growth apps and a literature assessment of clinical practice. Proposed features included adherence information, height and weight growth graphs with reference curves, an ability to customise, a ‘gamification’ aspect and separate versions for patients and caregivers. Two rounds of user focus groups in Birmingham and London evaluated the app concept designs. Based on the feedback of young patients and their caregivers in Round One (four children, nine caregivers of children mostly <10 years and one teenager), original and revised concepts were shown to older patients in Round Two; five teenagers (three of the girls had Turners syndrome) and five caregivers of the teenagers. The ability to see adherence data was liked by older patients and caregivers as it was felt useful for reviewing adherence before meeting their HCPs. Adherence data was not as interesting to younger patients and their caregivers as r-hGH medication was taken as part of a routine (eg. bedtime). There were some concerns that tracking adherence could lead to being judged by HCPs. Growth goals are advocated by HCPs and younger patients and their caregivers felt height and weight measures of growth were strongly motivating, although some caregivers voiced concerns that poor growth could be demoralising. Older patients and their caregivers felt that measuring weight could lead to self-esteem issues. Despite this, both user groups wanted to see clear growth graphs with reference curves. Caregivers of younger patients liked the use of images and measurements to show the patient journey over time. A customisable app was popular; however overt ‘gamification’ was not liked by patients or caregivers. Neither group wanted separate versions of the app. A priori assumptions on app design features were challenged. At odds with assumptions, a similar sharing of values between caregivers and patients was revealed. Whilst HCPs strive for monitoring, patients and caregivers would prefer clear reference based motivating and non-judgemental messages over time. The user research gave valuable insights that were fed back into the ongoing pilot.

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