A design thinking approach to primary ovarian insufficiency

Martin, Lisa Arndt; Porter, Alison Gatewood; Pelligrini, Vincent A.; Schnatz, Peter F.; Jiang, Xuezhi; Kleinstreuer, Nicole; Hall, Janet E.; Verbiest, Sarah; Olmstead, Jill; Fair, Ryan; Falorni, Alberto; Persani, Luca; Rajkovic, Aleksandar; Mehta, Khanjan; Nelson, Lawrence M.

doi:10.23736/s0031-0808.16.03259-6

Cited by 18 publications

(9 citation statements)

References 1 publication

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“…The system inspires a broader view of the importance of healthcare knowledge management in the digital age and a global perspective ( 30 ). One report from the NIH-IRP develops the concept of a Clinical Research Integrated Special Program (CRISP) ( 31 ).…”

Section: Knowledge Managementmentioning

confidence: 99%

A call for a US National Institute of Women’s Health and Human Development

Nelson

2024

Front. Endocrinol.

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Section: Knowledge Managementmentioning

confidence: 99%

A call for a US National Institute of Women’s Health and Human Development

Nelson

2024

Front. Endocrinol.

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“…The condition requires an integrated personal care approach with a team addressing all the clinical needs. The Mary Elizabeth Conover Foundation has been employing design thinking methodology to develop a model system to support a global approach to evaluating and managing POI ( 101 ). This approach is patient-centered and encourages empathy, creativity, and collaboration.…”

Section: Proof Of Concept: a Global Digital Hub For Secondary Amenorrheamentioning

confidence: 99%

My 28 Days - a global digital women’s health initiative for evaluation and management of secondary amenorrhea: case report and literature review

Nelson,

Spencer,

Hijane

et al. 2023

Front. Endocrinol.

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There is a need to close the gap between knowledge and action in health care. Effective care requires a convenient and reliable distribution process. As global internet and mobile communication increase capacity, innovative approaches to digital health education platforms and care delivery are feasible. We report the case of a young African woman who developed acute secondary amenorrhea at age 18. Subsequently, she experienced a 10-year delay in the diagnosis of the underlying cause. A global digital medical hub focused on women’s health and secondary amenorrhea could reduce the chance of such mismanagement. Such a hub would establish more efficient information integration and exchange processes to better serve patients, family caregivers, health care providers, and investigators. Here, we show proof of concept for a global digital medical hub for women’s health. First, we describe the physiological control systems that govern the normal menstrual cycle, and review the pathophysiology and management of secondary amenorrhea. The symptom may lead to broad and profound health implications for the patient and extended family members. In specific situations, there may be significant morbidity related to estradiol deficiency: (1) reduced bone mineral density, 2) cardiovascular disease, and 3) cognitive decline. Using primary ovarian insufficiency (POI) as the paradigm condition, the Mary Elizabeth Conover Foundation has been able to address the specific global educational needs of these women. The Foundation did this by creating a professionally managed Facebook group specifically for these women. POI most commonly presents with secondary amenorrhea. Here we demonstrate the feasibility of conducting a natural history study on secondary amenorrhea with international reach to be coordinated by a global digital medical hub. Such an approach takes full advantage of internet and mobile device communication systems. We refer to this global digital women’s health initiative as My 28 Days®.

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“…A Clinical POI Navigator could be a valuable addition to improving the quality of care for these women and optimizing their overall health and fertility. A properly managed cloud-based system could connect women with POI, a POI navigator, primary care providers, and investigators who have the requisite knowledge and expertise (Martin et al, 2017 ).…”

Section: Moving Forwardmentioning

confidence: 99%

Optimizing Fertility in Primary Ovarian Insufficiency: Case Report and Literature Review

Piedade¹,

Spencer

Persani

et al. 2021

Front. Genet.

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Primary ovarian insufficiency (POI) is a clinical spectrum of ovarian dysfunction. Overt POI presents with oligo/amenorrhea and hypergonadotropic hypogonadism before age 40 years. Overt POI involves chronic health problems to include increased morbidity and mortality related to estradiol deficiency and the associated osteoporosis and cardiovascular disease as well as psychological and psychiatric disorders related to the loss of reproductive hormones and infertility. Presently, with standard clinical testing, a mechanism for Overt POI can only be identified in about 10% of cases. Now discovery of new mechanisms permits an etiology to be identified in a research setting in 25–30% of overt cases. The most common genetic cause of Overt POI is premutation in FMR1. The associated infertility is life altering. Oocyte donation is effective, although many women prefer to conceive with their own ova. Surprisingly, the majority who have Overt POI still have detectable ovarian follicles (70%). The major mechanism of follicle dysfunction in Overt POI has been histologically defined by a prospective NIH study: inappropriate follicle luteinization due to the tonically elevated serum LH levels. A trial of physiologic hormone replacement therapy, clinically proven to suppress the elevated LH levels in these women, may improve follicle function and increase the chance of ovulation. Here, we report the case of a woman with Overt POI diagnosed at age 35 years. To attempt pregnancy, she elected a trial of intrauterine insemination (IUI) in conjunction with follicle monitoring and physiologic hormone replacement therapy. She conceived on the eighth cycle of treatment and delivered a healthy baby. Our report calls for a concerted effort to define the best methods by which to optimize fertility for women who have POI.

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A design thinking approach to primary ovarian insufficiency

Cited by 18 publications

References 1 publication

A call for a US National Institute of Women’s Health and Human Development

A call for a US National Institute of Women’s Health and Human Development

My 28 Days - a global digital women’s health initiative for evaluation and management of secondary amenorrhea: case report and literature review

Optimizing Fertility in Primary Ovarian Insufficiency: Case Report and Literature Review

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