Introduction: Adult Growth Hormone Deficient (AGHD) patients have often a difficult path from diagnosis to treatment. A patient advisory panel was conducted to better understand the AGHD patient journey and how this could be supported. This format was chosen to allow for direct patient to patient interactions and discussions and for physicians to learn.
Findings: A total of nine patient advisors (three childhood-onset; six adult-onset, age 3367 years; 4M: 5W) were invited through different US endocrinology offices for a one day meeting. All had multiple pituitary hormone deficiencies (MPHD) and received daily GH. Six HCPs attended the meeting to learn from the interactions. An independent moderator facilitated the meeting and discussion. All patients reported that their journey was challenging regardless of age at diagnosis or MPHD. They felt that there is a lack of AGHD knowledge, and unawareness among physicians and patients. Symptoms went unrecognized for years prior to- diagnoses/treatment: and included: weight gain, arthralgia, social withdrawal/apathy and extreme fatigue (labelled laziness). The majority was misdiagnosed: mainly with depression and treated with antidepressants for variable period of time. The patients felt their life caving in. Some were too fatigued to go to the doctor. After diagnosis, it sometimes took months to get on GH replacement therapy due to insurance issues and finding a physician who would treat. Support was very limited without the opportunity to learn about AGHD or connect with other patients. The advisors proposed several ideas to improve their experience, i.e. education of HCPs, and patients, patient ambassador programs, patient panels etc.
Conclusions: Hearing live from patients is an innovative way of learning outside the traditional clinical setting. We identified a major need for more education, awareness, and resources for AGHD patients as well as physicians to improve their care.
20 May 2017 - 23 May 2017