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Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
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- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Every time a parent leaves our neonatal intensive care unit (NICU) to take their child home, we are asking them to do superhuman things.
At Children’s National Hospital, the tasks may include tending to gastrostomy tubes for babies who can’t eat by mouth or maintaining home ventilators for babies having difficulty breathing.
While we have treated these patients, continued success at life outside our NICU can often require moms and dads to be intensive care doctors in their own homes.
How do we support them?
For us, better depression screening and the creation of a Perinatal Mental Health Taskforce is making a difference. But these improvements wouldn’t have been possible without our PCORI-funded study—even though the study yielded null results.
Scientific studies with null results are ones where the effect of an intervention—a therapy, a drug, a support or self-management program, or other means for improving people’s health—shows no difference when compared to an alternative intervention. While at first glance null results may not appear as valuable as studies showing one intervention performs better than another, they are very important. Studies with null results, such as this study, can surface unexpected discoveries and provide answers about how to use resources and time most efficiently and effectively to help patients.
Studies with null results, such as this study, can surface unexpected discoveries and provide answers about how to use resources and time most efficiently and effectively to help patients.Karen Fratantoni, MD, MPH Principal Investigator, PCORI-funded study
In our study, we capitalized on our primary care’s parent navigator program, taking it back to its NICU roots, where the program originated. Parent navigators are parents of children with complex medical needs who support other parents like them who are navigating the healthcare system.
We compared parents enrolled and not enrolled in a peer-support program in terms of their mental health and confidence in caring for their infants. One year later, we found no differences between parents receiving and not receiving peer support in relation to stress, depression, or increases in confidence in caring for infants.
However, our findings helped us make strides in improving our nation’s skyrocketing problem of maternal morbidity and mortality due to observations about patterns of depression that emerged from our study.
Expecting the Unexpected
In 2019, 1 in 10 babies were born preterm. That’s five straight years of the US preterm birth rate rising. Preterm birth has been associated with an increased risk of postpartum depression—a condition that can affect a mom’s ability to care for and connect with her newborn. Our NICU sees many of these babies and parents and is uniquely positioned to play a role in supporting them.
We are not a baby’s first home after birth. Rather, the babies we treat are premature or have complications a primary hospital can’t treat. They arrive from around 40 NICUs across three states.
In our study’s initial analysis, we were struck by the finding that 45 percent of parents showed depressive symptoms as they departed the NICU for home. Even more remarkable was that parents of full-term infants, born at 37 weeks or more, represented 57 percent of the study population and showed an eight-fold increase in the odds of depressive symptoms compared to parents with preterm infants, born at less than 28 weeks. We suspect that’s because parents of full-term babies were expecting to have healthy infants and return home quickly.
There is no doubt that our ability to accomplish this work has been strengthened by the foundation that we have from performing our PCORI-funded study.Lamia Soghier, MD, FAAP, CHSE Co-Principal Investigator, PCORI-funded study
We published our initial results in July 2020’s Journal of Pediatrics so our neonatology colleagues nationwide could build on them.
At our hospital, discussions with our clinical colleagues revealed they were seeing the same results on mental health screens, but everyone was screening differently or not communicating cross-departmentally.
We then realized the need for our medical community to come together, which led to the creation of the Perinatal Mental Health Taskforce. Our five founding members have grown to 50 from all Children’s National departments, and we have disseminated our policies, including using the same parental mental health screen, systemwide. Our fiscal year 2018 corporate goals even incorporated postpartum depression screening.
A Foundation for Success
There is no doubt that our ability to accomplish this work has been strengthened by the foundation that we have from performing our PCORI-funded study. And we believe it will lead to better outcomes for our patients and families.
During our study, we asked a new mother how she was doing after we saw she had screened high for postpartum depression. Her sense of relief was palpable. “I thought nobody would ever ask,” she told us. “Why did nobody ask before?”
Today, we can tell that mom and other parents like her, that someone will be asking. And to those of us who are clinicians working with these infants and parents, that means a lot.
The views expressed here are those of the author(s) and not necessarily those of PCORI.
August 27, 2021, 11:51 AM
Comment by PCORI Blog,
Hi, Danny. We reached out to the authors of the blog and here is their response:
Support for these parents doesn’t end at NICU discharge. Postpartum depression screening continues in the pediatrician’s office for the first six months of an infant’s life, and OB/GYN providers are asking mothers about their mental health as well.
Screening for postpartum depression and asking about symptoms, despite the results, sends a message that healthcare providers care about and prioritize the mental health of parents. We hope this demystifies postpartum mood disorders, helps families feel they are not alone, and encourages them to seek help when needed.
In addition to screening inpatient and outpatient, we are also working on disseminating information about postpartum depression for both mothers and fathers (as are many other organizations, doulas, community health, etc.). The key message to get out, so that parents can perform selfcare at home, is that postpartum depression is a widespread phenomenon. There is no shame and that parents aren't going mad. This message needs to be disseminated so that they can name it and then seek help at different levels (selfcare, community, professional services). We think recognition maybe the first step toward prevention. Then, we can work on mitigation such as how to sleep well, eat well, step away from stressors, etc.
We have recently engaged with our public relations and marketing colleagues to develop material that patients received in their admission packets even before screening. March of Dimes also has partnered in this work. This model maybe helpful to other institutions where the infant is not hospitalized. We are trying to develop online scheduling so that parents can request appointments with our social workers and psychologists independently. We are also working with a company that has an interesting model where we screen through a phone message or app and then provide messages of support and selfcare over several weeks and linkages to support groups. We also identify those who are positive and have an in-person care coordinator reach out and connect them to services.
August 18, 2021, 8:59 PM
Comment by PCORI Blog,
Hello, Danny. Thank you so much for reading our blog and for your excellent question. We have reached out to the researchers for an answer. We look forward to sharing the answer with you soon.
August 17, 2021, 12:35 PM
Comment by Danny van Leeuwen,
How can this fine work lead to standards of self-care in the home post-delivery whether or not screening was positive in the hospital?
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