Patient perspectives on acromegaly disease burden: insights from a community meeting
ObjectiveA profound mismatch between biological and symptom control in acromegaly creates a high disease burden despite achieving optimal biological control. There is a great need to learn more about the perspectives of patients living with acromegaly.MethodsAcromegaly Community hosted a virtual mee...
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Frontiers Media S.A.
2025-02-01
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| Series: | Frontiers in Endocrinology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fendo.2025.1516131/full |
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| author | Shruti N. Shah Kevin C. J. Yuen Vivien Bonert Wenyu Huang Jill Sisco Chrystal Palaty Kristen Dancel-Manning Nidhi Agrawal |
| author_facet | Shruti N. Shah Kevin C. J. Yuen Vivien Bonert Wenyu Huang Jill Sisco Chrystal Palaty Kristen Dancel-Manning Nidhi Agrawal |
| author_sort | Shruti N. Shah |
| collection | DOAJ |
| description | ObjectiveA profound mismatch between biological and symptom control in acromegaly creates a high disease burden despite achieving optimal biological control. There is a great need to learn more about the perspectives of patients living with acromegaly.MethodsAcromegaly Community hosted a virtual meeting in January 2021 and prepared a detailed report capturing participants’ input on acromegaly symptoms and current and future treatment approaches. The findings of this report are reviewed and summarized in this study.ResultsFatigue/muscle weakness (92%) and joint pain/arthritis (90%) are the two most common and troublesome symptoms reported by meeting participants. Acromegaly negatively impacts all aspects of daily living: social interaction (49%); exercise (42%); sports/recreational activities (39%); household activities (38%); attending school or job (38%); family relationships (33%); and walking (26%). Anxiety/depression is experienced by 75% of respondents. Eighty-three percent of patients underwent pituitary surgery, and over 71% of patients require medical therapy. Patients desire future improvements in medication efficacy, tolerability, and administration; mental health resources for themselves and their families; and other multimodal approaches to address their physical symptoms, specifically hunger, weight gain, muscle weakness, and joint pains.ConclusionAcromegaly patients experience significant physical and psychological burdens despite biochemical control, highlighting the need for comprehensive and patient-centered care. In particular, the impacts on activities of daily living (ADLs) and heavy psychosocial and socioeconomic burdens are striking. We advocate for periodic screening for impacted ADLs, multidisciplinary teams to proactively address these symptoms, and call for further research on under-evaluated aspects of the disease. |
| format | Article |
| id | doaj-art-8db95db091874554bdc37c73430e7bda |
| institution | Kabale University |
| issn | 1664-2392 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Endocrinology |
| spelling | doaj-art-8db95db091874554bdc37c73430e7bda2025-02-03T05:11:58ZengFrontiers Media S.A.Frontiers in Endocrinology1664-23922025-02-011610.3389/fendo.2025.15161311516131Patient perspectives on acromegaly disease burden: insights from a community meetingShruti N. Shah0Kevin C. J. Yuen1Vivien Bonert2Wenyu Huang3Jill Sisco4Chrystal Palaty5Kristen Dancel-Manning6Nidhi Agrawal7New York University Grossman School of Medicine, New York, NY, United StatesBarrow Neurological Institute, Phoenix, AZ, United StatesCedars-Sinai Medical Center, Los Angeles, CA, United StatesNorthwestern University Feinberg School of Medicine, Chicago, IL, United StatesAcromegaly Community, Grove, OK, United StatesMetaphase Health Research Consulting Inc., Vancouver, CA, United StatesNew York University Langone Health, New York, NY, United StatesNew York University Langone Health, New York, NY, United StatesObjectiveA profound mismatch between biological and symptom control in acromegaly creates a high disease burden despite achieving optimal biological control. There is a great need to learn more about the perspectives of patients living with acromegaly.MethodsAcromegaly Community hosted a virtual meeting in January 2021 and prepared a detailed report capturing participants’ input on acromegaly symptoms and current and future treatment approaches. The findings of this report are reviewed and summarized in this study.ResultsFatigue/muscle weakness (92%) and joint pain/arthritis (90%) are the two most common and troublesome symptoms reported by meeting participants. Acromegaly negatively impacts all aspects of daily living: social interaction (49%); exercise (42%); sports/recreational activities (39%); household activities (38%); attending school or job (38%); family relationships (33%); and walking (26%). Anxiety/depression is experienced by 75% of respondents. Eighty-three percent of patients underwent pituitary surgery, and over 71% of patients require medical therapy. Patients desire future improvements in medication efficacy, tolerability, and administration; mental health resources for themselves and their families; and other multimodal approaches to address their physical symptoms, specifically hunger, weight gain, muscle weakness, and joint pains.ConclusionAcromegaly patients experience significant physical and psychological burdens despite biochemical control, highlighting the need for comprehensive and patient-centered care. In particular, the impacts on activities of daily living (ADLs) and heavy psychosocial and socioeconomic burdens are striking. We advocate for periodic screening for impacted ADLs, multidisciplinary teams to proactively address these symptoms, and call for further research on under-evaluated aspects of the disease.https://www.frontiersin.org/articles/10.3389/fendo.2025.1516131/fullacromegalypituitarypatient perspectivequality of lifemental health |
| spellingShingle | Shruti N. Shah Kevin C. J. Yuen Vivien Bonert Wenyu Huang Jill Sisco Chrystal Palaty Kristen Dancel-Manning Nidhi Agrawal Patient perspectives on acromegaly disease burden: insights from a community meeting Frontiers in Endocrinology acromegaly pituitary patient perspective quality of life mental health |
| title | Patient perspectives on acromegaly disease burden: insights from a community meeting |
| title_full | Patient perspectives on acromegaly disease burden: insights from a community meeting |
| title_fullStr | Patient perspectives on acromegaly disease burden: insights from a community meeting |
| title_full_unstemmed | Patient perspectives on acromegaly disease burden: insights from a community meeting |
| title_short | Patient perspectives on acromegaly disease burden: insights from a community meeting |
| title_sort | patient perspectives on acromegaly disease burden insights from a community meeting |
| topic | acromegaly pituitary patient perspective quality of life mental health |
| url | https://www.frontiersin.org/articles/10.3389/fendo.2025.1516131/full |
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