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Kaushalendra Amatya

Measuring quality of life after pediatric kidney transplant

Kaushalendra Amatya

“Overall, children who receive kidney transplants had minimal concerns about quality of life after their operation. While it’s comforting that most pediatric patients had no significant problems, the range of quality of life scores indicate that some patients had remarkable difficulties,” says Kaushalendra Amatya, Ph.D., a pediatric psychologist in Nephrology and Cardiology at Children’s National and the study’s lead author.

After receiving a kidney transplant, children may experience quality-of-life difficulties that underscore the importance of screening transplant recipients for psychosocial function, according to Children’s research presented May 4, 2019, during the 10th Congress of the International Pediatric Transplant Association.

About 2,000 children and adolescents younger than 18 are on the national waiting list for an organ transplant, according to the Department of Health and Human Services, with most infants and school-aged children waiting for a heart, liver or kidney and most children older than 11 waiting for a kidney or liver. In 2018, 1,895 U.S. children received transplants.

The research team at Children’s National wanted to hear directly from kids about their quality of life after kidney transplant in order to tailor timely interventions to children. Generally, recipients of kidney transplants have reported impaired quality of life compared with healthy peers, with higher mental health difficulties, disrupted sleep patterns and lingering pain.

The Children’s team measured general health-related quality of life using a 23-item PedsQL Generic Core module and measured transplant-related quality of life using the PedsQL- Transplant Module. The forms, which can be used for patients as young as 2, take about five to 10 minutes to complete and were provided to the child, the parent or the primary care giver – as appropriate – during a follow-up visit after the transplant.

Thirty-three patient-parent dyads completed the measures, with an additional 25 reports obtained from either the patient or the parent. The patients’ mean age was 14.2; 41.4% were female.

“Overall, children who receive kidney transplants had minimal concerns about quality of life after their operation. While it’s comforting that most pediatric patients had no significant problems, the range of quality of life scores indicate that some patients had remarkable difficulties,” says Kaushalendra Amatya, Ph.D., a pediatric psychologist in Nephrology and Cardiology at Children’s National and the study’s lead author.

When the study team reviewed reports given by parents, they found their descriptions sometimes differed in striking ways from the children’s answers.

“Parents report lower values on emotional functioning, social functioning and total core quality of life, indicating that parents perceive their children as having more difficulties across these specific domains than the patients’ own self reports do,” Amatya adds.

10th Congress of the International Pediatric Transplant Association presentation

  • “An exploration of health-related quality of life in pediatric renal transplant recipients.”

Kaushalendra Amatya, Ph.D., pediatric psychologist and lead author; Christy Petyak, CPNP-PC, nurse practitioner and co-author; and Asha Moudgil, M.D., medical director, transplant and senior author.

newborn in incubator

In HIE lower heart rate variability signals stressed newborns

newborn in incubator

In newborns with hypoxic-ischemic encephalopathy (HIE), lower heart rate variability correlates with autonomic manifestations of stress shortly after birth, underscoring the value of this biomarker, according to Children’s research presented during the Pediatric Academic Societies 2019 Annual Meeting.

Tethered to an array of machines that keep their bodies nourished, warm and alive, newborns with health issues can’t speak. But Children’s research teams are tapping into what the machinery itself says, looking for insights into which vulnerable infants are most in need of earlier intervention.

Heart rate variability – or the variation between heartbeats – is a sign of health. Our autonomic nervous system constantly sends signals to adjust our heart rate under normal conditions. We can measure heart rate variability non-invasively, providing a way to detect potential problems with the autonomic nervous system as a sensitive marker of health in critically ill newborns,” says An N. Massaro, M.D., co-Director of Research for the Division of Neonatology at Children’s National, and the study’s senior author. “We’re looking for validated markers of brain injury in babies with HIE, and our study helps to support heart rate variability as one such valuable physiological biomarker.”

In most newborns, the autonomic nervous system reliably and automatically receives information about the body and the outside world and, in response, controls essential functions like blood pressure, body temperature, how quickly the baby breathes and how rapidly the newborn’s heart beats. The sympathetic part stimulates body processes, while the parasympathetic part inhibits body processes. When the nervous system’s internal auto-pilot falters, babies can suffer.

The Children’s team enrolled infants with HIE in the prospective, observational study. (HIE is brain damage that occurs with full-term babies who experience insufficient blood and oxygen flow to the brain around the time they are born.) Fifteen percent had severe encephalopathy. Mean age of babies in the observational study was 38.9 weeks gestation. Their median Apgar score at five minutes was 3; the 0-9 Apgar range indicates how ready newborns are for the rigors of life outside the womb.

The team analyzed heart rate variability metrics for three time periods:

  • The first 24 to 27 hours of life
  • The first three hours after babies undergoing therapeutic cooling were rewarmed and
  • The first three hours after babies’ body temperature had returned to normal.

They correlated the relationship between heart rate variability for 68 infants during at least one of these time periods with the stress z-score from the NICU Network Neurobehavioral Scale. The scale is a standardized assessment of newborn’s neurobehavioral integrity. The stress summary score indicates a newborn’s overall stress response, and six test items specifically relate to autonomic function.

“Alpha exponent and root mean square in short timescales, root mean square in long timescales, as well as low and high frequency powers positively correlated with stress scores and, even after adjusting for covariates, remained independently associated at 24 hours,” says Allie Townsend, the study’s lead author.

Pediatric Academic Societies 2019 Annual Meeting presentation

  • “Heart rate variability (HRV) measures of autonomic nervous system (ANS) function relates to neonatal neurobehavioral manifestations of stress in newborn with hypoxic-ischemic encephalopathy (HIE).”
    • Monday, April 29, 2019, 5:45 p.m. (EST)

Allie Townsend, lead author; Rathinaswamy B. Govindan, Ph.D., staff scientist, Advanced Physiological Signals Processing Lab and co-author; Penny Glass, Ph.D., director, Child Development Program and co-author; Judy Brown, co-author; Tareq Al-Shargabi, M.S., co-author; Taeun Chang, M.D., director, Neonatal Neurology and Neonatal Neurocritical Care Program and co-author; Adré J. du Plessis, M.B.Ch.B., MPH, chief of the Division of Fetal and Transitional Medicine and co-author; An N. Massaro, M.D., co-Director of Research for the Division of Neonatology and senior author, all of Children’s National.