Effect of Presenting Survival Information as Text or Pictograph During Periviable Birth Counseling: A Randomized, Controlled Trial.

OBJECTIVES: To examine whether presenting a 30% or a 60% chance of survival in different survival information formats would influence hypothetical periviable birth treatment choice and whether treatment choice would be associated with participants' recall or their intuitive beliefs about the chances of survival. STUDY DESIGN: An internet sample of women (n = 1052) were randomized to view a vignette with either a 30% or 60% chance of survival with intensive care during the periviable period. Participants were randomized to survival information presented as text-only, in a static pictograph, or in an iterative pictograph. Participants chose intensive care or palliative care and reported their recall of the chance of survival and their intuitive beliefs about their infant's chance of survival. RESULTS: There was no difference in treatment choice by presentation with a 30% vs 60% chance of survival (P = .48), by survival information format (P = .80), or their interaction (P = .18). However, participants' intuitive beliefs about chance of survival significantly predicted treatment choice (P < .001) and had the most explanatory power of any participant characteristic. Intuitive beliefs were optimistic and did not differ by presentation of a 30% or 60% chance of survival (P = .65), even among those with accurate recall of the chance of survival (P = .09). CONCLUSIONS: Physicians should recognize that parents may use more than outcome data to make treatment choices and in forming their own, often-optimistic, intuitive beliefs about their infant's chance of survival. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04859114.

Information Order for Periviable Counseling: Does It Make a Difference?

OBJECTIVES: To examine whether the order of presenting survival vs disability information, with or without the description of infant neonatal intensive care unit (NICU) experiences would influence treatment choice during hypothetical periviable birth counseling. STUDY DESIGN: An internet sample of childbearing-aged women (n = 839) viewed a pictograph displaying the chances of survival and a pictograph on the chances of disability for a baby resuscitated during the periviable period. The sample was randomized to the order of pictographs and level of description of infant NICU experiences. Participants selected between intensive care or comfort care and reported their personal values. RESULTS: The order of the information influenced treatment choices (P = .02); participants were more likely to choose intensive care if they saw the survival pictograph first (70%) than the disability pictograph first (62%). Level of description of premature infant NICU experiences did not influence treatment choice (P = .92). Participants who valued sanctity of life, autonomy in making decisions, who were more religious, and had adequate health literacy were more likely to choose intensive care. Such participant characteristics had greater explanatory power than the experimental manipulations. CONCLUSIONS: Subtle differences in how information is presented may influence critical decisions. However, even among women with the same values, diversity in treatment choice remains.

Parental understanding of crucial medical jargon used in prenatal prematurity counseling.

BACKGROUND: Parent-clinician shared decision making is the recommended model for the care of premature infants; thus, clinicians provide prenatal prematurity counseling to parents in the event of a mother's hospitalization for premature birth. However, parental understanding of medical jargon commonly used during prematurity counseling is unknown. METHODS: Within an overall research agenda to develop and test an educational aid for prenatal prematurity education, we designed the Parental Knowledge of Premature Birth questionnaire. To evaluate parental comprehension of the medical jargon contained within the questionnaire, we conducted cognitive interviews, a formal method for evaluating comprehension and response to questionnaire items. Parents were recruited from a Level IV Neonatal Intensive Care Unit; purposeful recruitment ensured diversity with respect to gender, race, literacy level, and child's gestational age. Data collection and analysis followed standard qualitative methods for cognitive interviewing. We report on the insights gained from these cognitive interviews regarding parental understanding of crucial medical jargon commonly used during prenatal prematurity counseling. RESULTS: Participants included 10 women and 6 men who ranged in age from 23 to 38 years and represented Black/African-American (38%), Asian (6%), and white (56%) backgrounds. Five participants (31%) had less than a high school education or reading level below 9th grade (Wide Range Achievement Test version 4 reading subtest). In the first round of interviews, parents of all education and literacy levels had difficulty with medical jargon commonly used in prematurity counseling. Terms that parents found difficult to understand included "gestational age", "mild or no developmental problems", and "neonatologist". Modified terms tested in a second round of interviews showed improved comprehension. CONCLUSION: Cognitive interviews provided empirical testing of parental understanding of crucial medical jargon and highlighted that language commonly used during prenatal prematurity counseling is not understood by many parents. For parents to participate in shared decision making, plain language should be used to maximize their understanding of medical information.

Giving Voice to Parents in the Development of the Preemie Prep for Parents (P3) Mobile App.

BACKGROUND: Parents at risk for preterm birth frequently receive prematurity education when the mother is hospitalized for premature labor. Parental ability to learn and consider the information is limited because of the stress of the hospitalization. A promising approach is dissemination of information to at-risk parents before the birth hospitalization. PURPOSE: This article describes formative research used to develop smartphone-based prematurity education app for parents at-risk for preterm birth. METHODS: Stakeholders were parents with a prior preterm birth. Using stakeholder meeting transcripts, constant comparative analysis was used to reflect upon the parental voice. RESULTS: The parents named the app, Preemie Prep for Parents (P3). Parent perspectives revealed desire for information in the following 5 categories. (1) Power in knowledge and control: parents want autonomy when learning information that may influence medical decision-making. (2) Content and framing of information: they desire information from a trusted resource that helps promote prenatal health and provides neonatal intensive care information. (3) Displaying content: parents want personalization, push notifications, photographs displaying fetal development, and easy-to-understand statistics. (4) Providing information without causing harm: they desire non-value-laden information, and they do not support "gamifying" the app to enhance utilization. (5) Decision making: parents want information that would benefit their decision making without assuming that parents have a certain outlook on life or particular values. IMPLICATIONS FOR PRACTICE: These findings support the need for the P3 App to aid in decision making when parents experience preterm birth. IMPLICATIONS FOR RESEARCH: The findings highlight the need to study the effects of smartphone-based prematurity education on medical decision-making.

Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia.

PURPOSE: Congenital diaphragmatic hernia (CDH) survivors experience increased risk of medical and neurodevelopmental challenges. This study describes the health-related quality of life (HRQOL), special education utilization and the family impact among neonatal CDH survivors. METHODS: A single-center prospective cohort of CDH survivors born between 1995 and 2006 was followed. Parents completed the PedsQL HRQOL index and a Family Impact survey to assess the need for medical equipment, home health services, and special education and quantify the burden placed on the family by their child's medical needs. RESULTS: Parents of 32 survivors participated at a mean survivor age of 8 ± 4 years. Many survivors utilized medical equipment (62%), home health services (18%) and special education (28%). CDH survivor HRQOL (79 ± 17) did not differ significantly from that of healthy children (83 ± 15, p = 0.12). HRQOL was diminished among survivors who required special education (67 ± 8 vs 82 ± 3; p = 0.04) and those reporting increased Family Impact score (p = 0.001). CONCLUSION: Many CDH survivors continue to require home medical equipment and home health services at school age. Most survivors have normal parent-reported HRQOL; however, the need for special education and higher family impact of neonatal CDH correlates with decreased HRQOL.

Intensive Care Associated Experiences of Extremely Premature Infants Who Die.

Objective: Pain and quality of death are important considerations in treatment choices for children. Our objective is to assess the intensive care-associated experiences of 22-25 weeks gestational age (GA) infants who die despite intensive care treatment. Study Design: In a 1:1 case-control study, medical records were screened for all inborn 22-25 weeks GA infants who received intensive care treatments between 2014 and 2020. Cases were all infants who died. Each case was matched by GA and birth weight to an infant who survived to discharge (control). Data was collected on cases and controls for a matched timeframe based on the case's duration of intensive care treatment. Information collected included intensive care-associated negative experiences (invasive procedures, surgeries, use of pain medication) and positive experiences (enteral feedings, being held by family). Results: The cases (n=20) survived for 0 to 93 days, with median (IQR) survival 8 (5, 24) days. The mean (SD) number of invasive procedures was higher for cases than controls, 34 (30) vs. 24 (22), p=0.004. Cases underwent 8 surgeries compared to 4 in the controls. Additionally, compared to controls, cases spent more time receiving pain medications (64% vs. 27%, p<0.001) and without being fed (54% vs. 39%, p<0.001). Half of cases were never held by parents until the day they died. Conclusion: Extremely premature infants who die despite intensive care face more treatment burdens than the survivors. Larger studies are needed to confirm these findings and gather information necessary for informed decisions about intensive care treatment of these infants.

Multimedia tablet or paper handout to supplement counseling during preterm birth hospitalization: a randomized controlled trial.

BACKGROUND: Parents of premature infants engage in shared decision-making regarding the care of their infant. The process of prenatal counseling typically involves a verbal conversation with a neonatal provider during hospitalization. Support people may not be available, and the pregnant person's memory is impaired by medications, pain, and stress. The American Academy of Pediatrics, American College of Obstetricians and Gynecologists, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development have called for improvements to this process, including the development of educational aids. OBJECTIVE: This study aimed to investigate whether a multimedia tablet would be more effective than a paper handout in supplementing verbal clinician counseling during preterm birth hospitalization. STUDY DESIGN: This was a randomized controlled trial including English-speaking pregnant people aged ≥18 years and hospitalized at 22 to 33 weeks' gestation for preterm birth. Exclusion criteria were known fetal or chromosomal anomaly and delivery before study completion. Pregnant people received either a multimedia tablet or a paper handout before verbal clinician counseling. Preintervention assessment included demographics and State-Trait Anxiety Inventory, and postintervention assessment included the Parent Knowledge of Premature Birth Questionnaire and State-Trait Anxiety Inventory. Continuous variables were analyzed by t-test and categorical variables by Fisher exact test. RESULTS: A total of 122 pregnant people referred for counseling were screened; 76 were randomized, and 59 completed the study. Demographics were similar between groups, except that pregnant people in the handout group were older (mean 32 vs 29 years; P=.03). The multimedia tablet group (n=32) was less likely to report reviewing all the educational material than the paper handout group (n=27) (41% vs 72%; P=.037). Both groups correctly answered a similar number of knowledge items (P=.088). Postintervention state anxiety decreased in both groups (P<.0001), with no difference between groups. Computerized tracking showed that the multimedia group spent a median of 37 minutes reviewing the tablet. CONCLUSION: Contrary to our hypothesis, a paper handout and multimedia tablet were equally effective in the labor unit for supplementing verbal preterm birth counseling, and both decreased parental anxiety.

Smartphone-Based Video Antenatal Preterm Birth Education: The Preemie Prep for Parents Randomized Clinical Trial.

Importance: Preterm birth is a leading cause of infant mortality and child morbidity. Preterm birth is not always unexpected, yet standard prenatal care does not offer anticipatory education to parents at risk of delivering preterm, which leaves parents unprepared to make health care choices during the pregnancy that can improve survival and decrease morbidity in case of preterm birth. Objective: To evaluate the effect of the Preemie Prep for Parents (P3) program on maternal knowledge of preterm birth, preparation for decision-making, and anxiety. Design, Setting, and Participants: Recruitment for this randomized clinical trial conducted at a US academic medical center took place from February 3, 2020, to April 12, 2021. A total of 120 pregnant persons with a risk factor for preterm birth were enrolled between 16 and 21 weeks' gestational age and followed up through pregnancy completion. Intervention: Starting at 18 weeks' gestational age, P3 program participants received links delivered via text message to 51 gestational age-specific short animated videos. Control participants received links to patient education webpages from the American College of Obstetricians and Gynecologists. Main Outcomes and Measures: At 25 weeks' gestation, scores on the Parent Prematurity Knowledge Questionnaire (scored as percent correct), Preparation for Decision Making Scale (scored 0-100), and Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety computerized adaptive test. Analysis was based on an intention to treat. Results: A total of 120 pregnant participants (mean [SD] age, 32.5 [4.9] years) were included in the study; 60 participants were randomized to each group. Participants in the P3 group scored higher than those in the control group on knowledge of long-term outcomes at 25 weeks (88.5% vs 73.2%; estimated difference, 15.3 percentage points; 95% CI, 8.3-22.5 percentage points; P < .001). Participants in the P3 group reported being significantly more prepared than did participants in the control group for neonatal resuscitation decision-making at 25 weeks (Preparation for Decision Making Scale score, 76.0 vs 52.3; difference, 23.7; 95% CI, 14.1-33.2). There was no difference between the P3 group and the control group in anxiety at 25 weeks (mean [SE] PROMIS Anxiety scores, 53.8 [1.1] vs 54.0 [1.1]; difference, -0.1; 95% CI, -3.2 to 2.9). Conclusions and Relevance: In this randomized clinical trial, pregnant persons randomly assigned to the P3 program had more knowledge of core competencies and were more prepared to make decisions that affect maternal and infant health, without experiencing worse anxiety. Mobile antenatal preterm birth education may provide a unique benefit to parents with preterm birth risk factors. Trial Registration: ClinicalTrials.gov Identifier: NCT04093492.

The 30-Minute Sprint: Recognizing Intrapartum Prematurity Counseling Limitations.

Describe the characteristics and content of intrapartum counseling provided to women hospitalized for premature birth between 23 and 34 weeks' gestation age (GA). The study was conducted between April and December 2009 in two teaching hospitals with labor and delivery units and level 3 neonatal intensive care units. Counselors completed a postcounseling survey. From 60 sessions, 46 surveys were collected. The median counseling duration was 30 minutes; this was not associated with gestational age. The support-person was not present for most (57%) counseling sessions. There was a positive correlation ( p = 0.001) between the number of maternal questions and her education. There was no difference in counseling content across the 23 to 34 weeks' GA regarding delivery room care, physical/mental disability, and vision problems. This study of characteristics and content of premature birth counseling for birth between 23 and 34 weeks' GA found that the duration of most sessions is 30 minutes; the father of the baby is not present during counseling for most premature births, and the topics discussed by counselors are fairly similar and extensive irrespective of the GA. These findings highlight the existing contrast between the recommended counseling practices and the actual practice reported by counselors.

Effective questionnaire design: How to use cognitive interviews to refine questionnaire items.

BACKGROUND: Cognitive interviewing is a technique that can be used to improve and refine questionnaire items. We describe the basic methodology of cognitive interviewing and illustrate its utility through our experience using cognitive interviews to refine a questionnaire assessing parental understanding of concepts related to preterm birth. METHODS: Cognitive interviews were conducted using current best practices. Results were analyzed by the multidisciplinary research team and questionnaire items that were revealed to be problematic were revised. RESULTS: Revisions to the questionnaire items were made to improve clarity and to elicit responses that truly reflected the participants understanding of the concept. CONCLUSION: Cognitive interviewing is a useful methodology for improving validity of questionnaire items, we recommend researchers developing new questionnaire items design and complete cognitive interviews to improve their items and increase confidence in study conclusions.

Designing a tablet-based prematurity education app for parents hospitalized for preterm birth.

BACKGROUND: As technology has advanced over the last decade, handheld Mobile Health (mHealth) applications have increased in popularity. Pregnancy is one area of mHealth that has rapidly expanded, however very few pregnancy apps are developed in collaboration with health professionals. This creates an environment where the pregnancy information women are accessing may be inaccurate or even dangerous. Additionally, there are relatively few medical apps devoted to prematurity or targeted to women at risk for premature birth. To address the gap in premature birth education, we assembled a multidisciplinary team, including health care professionals, and developed the Preemie Prep for Parents (P3) app. METHODS: Our team previously conducted 5 focus group meetings to assess the information needs of our target audience. Based on this information we developed a low fidelity P3 prototype. Our software development team transferred the low fidelity prototype into a high fidelity prototype which was hosted on Test Flight (a beta testing platform). We performed heuristic evaluation as well as user testing to improve the P3 app. RESULTS: User testing of the high fidelity P3 prototype was performed with 13 diverse participants. 6 participants were parents of currently admitted Neonatal Intensive Care Unit (NICU) babies and 7 participants were women who had been or were currently pregnant. The native language of participants included English, Spanish, and Hmong and their educational level varied between completing high school and graduate degree. Participants provided feedback on the content of the P3 app, as well as its organization and aesthetics. The feedback led to 83 iterations of the P3 app prior to its deployment. Overall, participants noted that the information was "informative" and "reliable". They also noted that the P3 app provided control over the information they could view and when they viewed it, stating "I could see info on my time". Overall, participants felt that the P3 app was a valuable tool for mothers in preterm labor and it would help them ask questions. CONCLUSIONS: Development of a mHealth app provides unique challenges regarding content, reliability of information, organization, and aesthetics. Creation of the P3 app to address the educational needs of women at risk for premature birth required assembling a multidisciplinary team, which included target users, and implementing an iterative design process. The efficacy of this app in improving user knowledge and decreasing anxiety is currently being tested in a randomized controlled trial.

Errors in Clinician-Parent Communication during Neonatal Hospitalization.

Error in clinician-parent communication is not a new issue in pediatrics. It has been the impetus behind national initiatives, namely, family-centered rounds. While family-centered rounds have proven effective, their success is dependent on the family being present during rounds. This does not always occur during prolonged hospitalizations, particularly in the Neonatal Intensive Care Unit (NICU). Current communication methods with parents not present during rounds rely heavily on the provider's prerogative and ability to multitask. Thus, errors in communication are commonplace and are largely accepted as inevitable. For the sake of the parents of a patient in the NICU, a high-fidelity communication system is urgently needed. NICUs must move beyond the telephone and use modern innovations in communication technology.

Fatal neonatal stroke from a prenatal cardiac thrombus.

Despite careful investigation, the etiology of many perinatal arterial strokes is unknown. We report on a 5-day-old boy with a cardiac thrombus of prenatal origin resulting in a fatal postnatal stroke. The thrombus was discovered only at autopsy, challenging the assumption of a placental source of embolus in perinatal strokes in the absence of macroscopic and microscopic examination of the heart.

Effectiveness of Digital Multimedia Educational Aids Produced by Intensive Care Unit Providers.

Multimedia improves understanding of information. Professionally developed digital multimedia educational modules are expensive. We tested educational modules developed by a medical student without extensive multimedia production training. The modules were developed with neonatologist collaboration, uploaded to YouTube, and presented via iPad to neonatal intensive care unit family members who were ≥ 18 years, English literate, and unexposed to topic they were reviewing. Thirty-six participants viewed the modules once and then answered topic-specific key questions. Thirty of 36 (83%) of the participants answered 4/4 (100%) of questions correctly and 6/36 (17%) answered three-fourths (75%) correctly, demonstrating success of the educational modules. Health care workers can economically create effective digital multimedia educational materials without extensive training.

Video Education in Early Pregnancy and Parent Knowledge of Neonatal Resuscitation Options: A Secondary Analysis of a Randomized Clinical Trial.

This secondary analysis of a randomized clinical trial investigates the proportion of correct answers on neonatal resuscitation options among parents after seeing a video on these options.

Informing and educating parents about the risks and outcomes of prematurity.

The current process of educating and informing parents of the concerns and outcomes of premature infants is suboptimal, mostly because of modifiable factors. Proven methods to improve the transference of information are underused. In most institutions, the task to inform and educate parents is left to individual providers. Effective parent-clinician communication depends collectively on parents, clinicians, and the health care systems. Efforts must focus on improving communication and not on decreasing information provided to parents. If done successfully, we might find new and worthy allies in the trenches of the NICU.

Role of admission gas exchange measurement in predicting congenital diaphragmatic hernia survival in the era of gentle ventilation.

BACKGROUND/PURPOSE: Neonates with significant congenital diaphragmatic hernia (CDH) require cardiopulmonary support. Management has been characterized by progressive abandonment of hyperventilation. Ability to prognosticate outcomes using measures of ventilation and oxygenation with gentle ventilation remains unclear. We sought to determine whether assessment of gas exchange at the time of NICU admission is predictive of survival in this current era. METHODS: Neonates with CDH admitted to a Children's Hospital from 1995 to 2006 were evaluated for demographics, blood gas (ABG) measurements and ventilator settings for the first 48hours, and discharge outcome. RESULTS: One-hundred-and-nineteen CDH patients were admitted, 88 (74%) survived. Mean admission ABG pCO2 was higher in infants who died compared to survivors (86±48 versus 49±20, p≤0.001); positive predictive value (PPV) for mortality of pCO2≥80mmHg was 0.71. Mean first hour preductal oxygen saturation (preductalO2Sat) was lower in infants who died compared to survivors (81±17 versus 97±5, p<0.001); PPV for mortality of preductalO2Sat<85% was 0.82. Eleven patients met both pCO2 and preductalO2Sat criteria, and 10 (91%) died, PPV of 0.92. Within hours of admission, pCO2 and preductalO2Sat differences between survivors and nonsurvivors lost significance. CONCLUSION: Admission pCO2 and preductalO2Sat may be useful in predicting survival in neonatal CDH. The differential in gas exchange between survivors and nonsurvivors loses significance with contemporary neonatal care.