Purpose: To assess oncofertility content on fertility clinic websites as indicated by eight relevant keywords. Additionally, we sought to describe the relationship between oncofertility content and five predetermined clinic characteristics.
Methods: We examined 381 fertility clinic websites that are members of the Society for Associated Reproductive Technology (SART). Extracted data included clinic location, practice type (private vs academic), size (cycles/year), type of NCI designated center (cancer center vs comprehensive cancer center), and distance from the nearest NCI center. Additionally, we documented whether the clinic was located in a state mandating reproductive and infertility services and/or included fertility preservation for "iatrogenic infertility" as reported by the American Society for Reproductive Medicine (ASRM). Data were summarized using descriptive statistics and compared using chi-squared or t-test as appropriate.
Results: Of the 381 fertility clinic websites analyzed, 322 (85%) contained at least one oncofertility-related keyword. Most frequently used terms included cancer (79%) and fertility preservation (78%), while less frequently used terms included suppression (9.4%) and shielding (5.0%). Practices that initiated ≥ 501 cycles per year were more likely to mention one of the oncofertility keywords (OR 1.2; 95% CI 1.1-1.3). The associations of oncofertility website content with practice type, state-mandated fertility insurance coverage, and distance from an NCI-designated cancer center were not statistically significant. Large clinic size was the only predictive factor for inclusion of oncofertility website content. Further studies are required to evaluate whether inclusion of oncofertility content on clinic websites impacts the use of these services by patients with cancer.
Conclusion: This is the first study correlating availability of oncofertility content on SART fertility clinic websites with consideration of geographic proximity to NCI designated cancer centers. Large clinic size was the only predictive factor for inclusion of oncofertility website content.
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http://dx.doi.org/10.1007/s10815-022-02442-y | DOI Listing |
Alzheimers Dement
December 2024
University of California San Francisco (UCSF), San Francisco, CA, USA; Northern California Institute for Research & Education (NCIRE), San Francisco, CA, USA; San Francisco Veterans Administration Medical Center (SFVAMC), San Francisco, CA, CA, USA.
The Alzheimer's Disease Neuroimaging Initiative (ADNI) has made many important contributions to the development of Alzheimer's Disease (AD) disease modifying treatments and diagnostic biomarkers. Since its funding in 2004 by the National Institutes of Aging, the goal of ADNI has been the validation of biomarkers for AD treatment trials. ADNI has enrolled over 2,400 participants in the USA and Canada for longitudinal clinical, cognitive, and biomarker studies.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Brown University School of Public Health, Providence, RI, USA.
Background: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia (AD/ADRD) Clinical Trials (IMPACT) Collaboratory, in partnership with the Alzheimer's Association, convened a Lived Experience Panel (LEP), a group of 9-12 individuals, including people living with cognitive symptoms, proxies representing people with an advanced cognitive disorder or who are deceased, and care partners of a person living with dementia. The aim was for the LEP members to share their experiences with research, inform the development of research priorities, and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of providing a space for people with lived experiences to share their thoughts and recommendations, we continue to report on the final stage of LEP in its original design.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Department of Clinical, Educational, and Health Psychology, Division of Psychology and Language Sciences, University College London, London, United Kingdom.
Background: How people affected by non-memory-led and inherited dementias (NMLDs) interact with online health resources is poorly understood. We conducted the world's largest survey exploring 'digital access in non-memory-led dementias' to learn directly from people with NMLD, their care partners and NMLD Healthcare Professionals (HCPs) about the NMLD experience interacting with web-based health resources.
Method: Four surveys [for individuals diagnosed with NMLD, care partners, care partner proxy for person with NMLD, HCP proxy] were co-developed with people with NMLD experience.
Alzheimers Dement
December 2024
Michigan Alzheimer's Disease Center, University of Michigan, Ann Arbor, MI, USA.
Background: Care partners (CPs) of people with dementia suffer from chronic stress impacting their mental and physical health. Mindfulness Based Stress Reduction (MBSR) has been shown to reduce depressive symptoms in CPs. Mindfulness-Based Dementia Care (MBDC) is an adaptation of MBSR tailored to CPs.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
OHSU-PSU School of Public Health, Portland, OR, USA.
Care partners of people living with dementia (PLWD) need information and access to many services and programs to support their person and maintain their own wellbeing. We conducted focus groups (n = 5) and interviews (n = 24) with care partners of PLWD and interviews with leaders of organizations serving PLWD in the Portland, Oregon region in 2022-2023. A comprehensive review of organizational websites and relevant literature identified several US-based role model programs and existing resources.
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