Publications by authors named "Sara M Andrews"

Article Synopsis
  • * Data was gathered through a national survey involving 246 mothers, revealing that breastfeeding duration was typically longer for unaffected infants compared to those with FXS, especially among infants of mothers with postpartum depression.
  • * About 42% of mothers with infants with FXS reported breastfeeding difficulties, primarily due to the child's perceived challenges, while the main reason for stopping among unaffected infants was personal choice, suggesting that infants with FXS have unique early needs that may benefit from targeted interventions.
View Article and Find Full Text PDF

Objective: The objective of this study was to describe feeding practices and weight status in a cohort of children with congenital Zika syndrome (CZS) in northeastern Brazil.

Methods: This longitudinal study of children with CZS (N = 156) included data collection on child feeding practices and weight status at five timepoints between 2018 and 2022. The average age of the children was 32.

View Article and Find Full Text PDF

Hyperphagia is highly penetrant in Prader-Willi syndrome (PWS) and has increasingly been reported in other neurogenetic conditions (NGC). The Hyperphagia Questionnaire (HQ) was completed by caregivers of 4-8-year-olds with PWS (n = 17), Angelman syndrome (AS; n = 22), Williams syndrome (WS; n = 25), or low-risk controls (LRC; n = 35). All NGC groups were significantly elevated in HQ Total and Behavior scores compared to LRC.

View Article and Find Full Text PDF

Individuals with severe combined immunodeficiency (SCID), a group of rare, genetic conditions, are at risk for life-threatening illnesses unless diagnosed and treated early. Even after early identification through newborn screening, parents of children with SCID embark on a complex journey marked by a variety of informational and emotional support needs. This paper explored the types of uncertainties experienced by parents of a child with SCID diagnosed through newborn screening.

View Article and Find Full Text PDF

GM1-gangliosidosis (GM1) is a rare neurodegenerative disorder leading to early mortality and causing progressive decline of physical skills and cerebral functioning. No approved treatment for GM1 exists. In this study-the first to explore priorities of parents of subjects with pediatric onset forms of GM1-we address a crucial gap by characterizing symptoms most critical to caregivers of children with GM1 to treat.

View Article and Find Full Text PDF

Background: Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child's diagnosis, treatment, recovery, and quality of life. To fully understand parents' experiences throughout their SCID journey, it is important to explore the stressors generated by such uncertainties and how parents cope with these stressors.

View Article and Find Full Text PDF

Objectives: Sanfilippo syndrome is a rare multisystem disease with no approved treatments. This study explores caregiver perspectives on the most impactful symptoms and patient-relevant clinical outcomes assessments. The pediatric onset and progressive neurodegenerative nature of Sanfilippo limits use of self-report in clinical research.

View Article and Find Full Text PDF

Background And Objectives: Projections that 60 transformative cell and gene therapies could be approved by the U.S. Food and Drug Administration (FDA) within 10 years underscore an urgent need to modernize the newborn screening (NBS) system.

View Article and Find Full Text PDF

Background: Many research studies fail to enroll enough research participants. Patient-facing electronic health record applications, known as patient portals, may be used to send research invitations to eligible patients.

Objective: The first aim was to determine if receipt of a patient portal research recruitment invitation was associated with enrollment in a large ongoing study of newborns (Early Check).

View Article and Find Full Text PDF

Importance: Novel therapies, including cell and gene therapies, can radically improve outcomes among patients with rare disorders, especially if provided early. Newborn screening (NBS) could support early access to novel therapies, but the speed of new therapy development is a disruptive event for which the public health NBS system and state newborn screening programs are unprepared.

Objective: To identify and evaluate possible solutions for modernizing NBS.

View Article and Find Full Text PDF

This study sought to describe food- and non-food-related behaviors of children aged 3 to 18 years with Prader-Willi syndrome (PWS) in home and school settings, as assessed by 86 parents and 63 teachers using 7 subscales of the Global Assessment of Individual's Behavior (GAIB). General Behavior Problem, Non-Food-Related Behavior Problem, and Non-Food-Related Obsessive Speech and Compulsive Behavior (OS/CB) scores did not differ significantly between parent and teacher reports. Food-Related Behavior Problem scores were higher in parent versus teacher reports when the mother had less than a college education (difference of 13.

View Article and Find Full Text PDF

Objective: The purpose of this study was to understand the ethical, legal, and social issues described by parents of children with known or suspected genetic conditions that cause intellectual and developmental disabilities regarding research use of their child's electronic health record (EHR).

Materials And Methods: We conducted 4 focus groups with parents of children with a known (n = 12) or suspected (n = 11) genetic condition, as well as 2 comparison groups with parents who had a child with no known genetic condition (n = 15). Focus group transcripts were coded and analyzed using directed content analysis.

View Article and Find Full Text PDF

Peer support may be an effective strategy to improve heart healthy behaviors among populations who have a strong communal identity, such as women veterans. Women veterans are a particularly important group to target as they are the fastest growing sub-population within the Veterans Affairs healthcare system. Our goal was to identify aspects of peer support and modalities for providing peer support that are preferred by women veterans at risk for cardiovascular disease (CVD).

View Article and Find Full Text PDF

Background: Colorectal cancer (CRC) is the third most commonly diagnosed cancer in the US. CRC survivors may have complex healthcare needs requiring care from both specialists and primary care. Our objective was to understand how CRC survivors perceive their survivorship care, especially management of their cardiovascular-related chronic diseases.

View Article and Find Full Text PDF

Objective: We studied a telemedicine intervention for persistent poorly controlled diabetes mellitus (PPDM) that combined telemonitoring, self-management support, and medication management. The intervention was designed for practical delivery using existing Veterans Affairs (VA) telemedicine infrastructure. To refine the intervention and inform the delivery of the intervention in other settings, we examined participants' experiences.

View Article and Find Full Text PDF

Context: American youth are insufficiently active, and minigrant programs have been developed to facilitate implementation of evidence-based interventions in communities. However, little is known about the cost-effectiveness of targeted minigrant programs for the implementation of physical activity (PA) promoting strategies for youth.

Objective: To determine the cost-effectiveness of a minigrant program to increase PA among youth.

View Article and Find Full Text PDF

We examined facilitators and barriers to adoption of genomic services for colorectal care, one of the first genomic medicine applications, within the Veterans Health Administration to shed light on areas for practice change. We conducted semi-structured interviews with 58 clinicians to understand use of the following genomic services for colorectal care: family health history documentation, molecular and genetic testing, and genetic counseling. Data collection and analysis were informed by two conceptual frameworks, the Greenhalgh Diffusion of Innovation and Andersen Behavioral Model, to allow for concurrent examination of both access and innovation factors.

View Article and Find Full Text PDF