3 Top Papers You May Have Missed in April 2021
AUTHOR:
Scott T. Vergano, MD
Department of Pediatrics, Children’s Hospital of The King’s Daughters, Norfolk, VA
CITATION:
Vergano ST. 3 top papers you may have missed in April 2021. Consultant360. Published online May 12, 2021.
For those of you who spent a little more time outdoors last month enjoying the warmth and beauty of springtime, and a little less time indoors reading journal articles, here are 3 selections of importance from the month of April, just in case you missed them.
Changes in Neurodevelopmental Outcomes From Age 2 to 10 Years for Children Born Extremely Preterm1
In this study, developmental outcome of children aged 10 years was compared with assessment of children aged 2 years for 802 surviving children of an initial cohort of 1506 infants born at fewer than 28 weeks' gestation at 14 hospitals across 5 states. Overall, 67% of children showed no change in level of neurodevelopmental assessment, 27% showed improvement, and 5% showed worsening. Of note, 63% of the children with moderate to severe neurodevelopmental impairment at 2 years of age and 36% of the children with profound neurodevelopmental impairment at 2 years of age had mild or no impairment at 10 years of age.
The optimistic perspective reflected by the authors is helpful in the way that I counsel parents or guardians of these children in my practice. Far from a static encephalopathy, the data presented here strongly support the plasticity of the central nervous system in these children and their ability to improve neurodevelopmental outcomes even in the most profoundly affected neonates born extremely premature. This study will support my approach of encouraging early and aggressive developmental intervention and offering hope to parents or guardians, including among the earliest and most severely affected preterm neonates.
How Sharing Clinical Notes Affects the Patient-Physician Relationship2
As of April 5, a mandate from the 21st Century Cures Act has required open access for all families to most clinical documentation, including office, consult, and hospital notes and results of laboratory and imaging studies. Exceptions are for psychotherapy notes, items in which there is a reasonable expectation of litigation, notes that are confidential by law, or items that confer a substantial risk of harm if disclosed. In this update published in JAMA, ramifications of the open notes policy are reviewed. Concerns discussed include increasing time demands for documentation and for responding to patient inquiries, patient difficulties in understanding medical documentation, negative patient responses to items documented in notes, increased anxiety among patients after reviewing their records, and inequitable access to the provisions of the mandate.
Although each of these issues is of concern to me, I most worry about the negative responses from parents who read my notes. The article cites a compelling study of 22,959 adult patients who were asked if they felt offended or judged after reading their provider’s notes. Among the 11% of patients who said “yes,” themes that emerged included errors and surprise (incorrect information or documented history and physical examination events that they did not recall), labeling (including words like "obese" or "anxious"), and disrespect (including comments like "patient claims" or "patient denies"). I have always been taught to write in a medical chart as if my words might be read aloud in court. Since our records have been available on the patient portal this month, though, I have taken just a little more time and care in my wording and documentation to make certain that all my information is accurate and not offensive to a patient, parent, or guardian who might be reading it.
For those of you who participated in OpenNotes or other similar initiatives, I would love some advice and feedback. What has your experience been? How has it changed your documentation or your process? What suggestions do you have for those of us whose offices just started sharing clinical notes this month?
'I Think I'm Transgender': A Clinician's Guide to Next Steps3
Judging by the comments online, this article, published in April in Pediatric News and originally posted online in February as a commentary on Medscape, seems to have generated significant controversy. The author walks through her recommended steps when a patient discloses a nonconforming gender identity. She discusses terminology and the importance of using respectful language and follow-up questions regarding their history and gender journey. She also addresses the components of gender transition, which include social transition (ie, preferred name, pronouns, and external expression), puberty-blocking hormones, medical transition (ie, hormonal therapy and surgery), sexuality, and fertility. Finally, she emphasizes the importance of mental health support and referral for these patients and their parents or guardians.
I find this article particularly helpful as a practical guide to approaching patients with gender identity issues and all adolescents in general. The author’s recommended introduction is, "My name is Dr Pine, and my pronouns are she/her. What are your pronouns? How do you describe your gender identity?" Although wanting to be supportive and sensitive to gender identity issues, I as of yet do not feel comfortable disclosing or asking gender identity upfront, as I see it as intrinsically personal, and I do not include it in my greeting, on my identification badge, or in my email signature. Nonetheless, I have developed a comfort with asking about pronouns and gender identity at appropriate times in my adolescent check-ups and have found teenagers generally accepting and open to discussion. The remainder of the article seems to be consistent with American Academy of Pediatrics (AAP) policy and recent statements endorsing gender-affirming care and provides a sensitive and helpful approach to the care of patients with gender identity concerns.4,5
Nonetheless, many online comments are critical of the article and its recommendations. My suggestion? Read for yourself. What are your thoughts? Please feel free to share your opinions with me, with your colleagues, or with us at editor@consultant360.com.
References
- Taylor GL, Joseph RM, Kuban KC, et al. Changes in neurodevelopmental outcomes from age 2 to 10 years for children born extremely preterm. Pediatrics. 2021:147(5):e2020001040. https://doi.org/10.1542/peds.2020-001040
- Rubin R. How sharing clinical notes affects the patient-physician relationship. JAMA. 2021;325(16):1596-1598. https://doi.org/10.1001/jama.2021.4755
- Pine ED. ‘I think I’m transgender’: a clinician’s guide to next steps. Medscape. Published online February 19, 2021. https://www.medscape.com/viewarticle/945974
- Rafferty J. Ensuring comprehensive care and support for transgender and gender-diverse children and adolescents. Pediatrics. 2018;142(4):e20182162. https://doi.org/10.1542/peds.2018-2162
- Savio Beers L. American Academy of Pediatrics speaks out against bills harming transgender youth. News release. American Academy of Pediatrics. March 16, 2021. Accessed May 11, 2021. https://services.aap.org/en/news-room/news-releases/aap/2021/american-academy-of-pediatrics-speaks-out-against-bills-harming-transgender-youth/