Amy E. Baughcum

Prospective assessment in newborns of diabetes autoimmunity (PANDA): Maternal understanding of infant diabetes risk

Purpose: To assess accuracy of mothers’ understanding of their newborns’ genetic risk for type 1 diabetes and to identify predictors of the comprehension and retention of genetic information. Methods: Mothers of 435 newborns genetically screened at birth were informed of the infant’s risk for type 1 diabetes using a standard script that provided both categorical and numerical risk information. The mothers’ comprehension and retention of this information were assessed by structured interview on two occasions, ∼3.6 weeks and ∼3.9 months postnotification. Results: At the initial interview, 73.1% of mothers gave a correct estimate of their child’s genetic risk, 3.2% overestimated risk, 13.3% underestimated risk, and 10.3% could not recall risk at all. At the follow-up interview, fewer mothers (61.9%) correctly estimated their child’s risk and more mothers (24.4%) underestimated their child’s risk. Maternal accuracy was associated with maternal education, ethnic minority status, infant risk status, maternal ability to spontaneously recall both categorical and numerical risk estimates, and length of time since risk notification. Underestimation of risk was associated with maternal education, family history of diabetes, time since risk notification, and maternal anxiety about the baby’s risk. Conclusion: The accuracy of mothers’ recall of infant risk declines over time, with an increasing number of mothers underestimating the infant’s risk. Effective risk communication strategies need to be developed and incorporated into genetic screening programs.

Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows.

PURPOSE Health care providers have reported inadequate training, poor institutional support, and discomfort in managing pediatric end-of-life (EOL) issues. As a result, the transition to palliative care may be late and abrupt, and children may experience significant suffering at EOL. In this pilot study, we developed and longitudinally evaluated the efficacy of a pediatric palliative care workshop to enhance training for medical fellows. METHODS Thirty-two pediatric oncology fellows participated in a day-long workshop on palliative care, including topics on pain and symptom management, ethics, communication, and grief. Barriers, attitudes, and knowledge with regard to pediatric palliative care were assessed immediately before the workshop and 6 and 12 months later. Knowledge was also assessed immediately after the workshop. Twenty fellows completed all assessments. RESULTS At 6 and 12 months, staff discomfort with death and lack of knowledge were the most frequently cited barriers to providing effective EOL care. Perceived competence and comfort in EOL care improved over time, while beliefs remained relatively open and stable. Overall knowledge of pediatric palliative care improved post-workshop and at 6 months, then stabilized. Knowledge of general pediatric issues, ethics, and communication did not change, while knowledge of pain management, symptom management, and grief showed initial improvement then varying patterns of change over time. CONCLUSIONS Although perceived competence and comfort with palliative care improved, the workshop did not uniformly produce lasting improvements in knowledge. Sustained knowledge will likely require more intensive training in palliative care. Continued research and evaluation of similar educational programs are needed.

Musculoskeletal Pain, Self-reported Physical Function, and Quality of Life in the Teen-Longitudinal Assessment of Bariatric Surgery (Teen-LABS) Cohort

IMPORTANCE Obesity is associated with chronic musculoskeletal pain and is a risk factor for disability and osteoarthritis. OBJECTIVES To describe the prevalence, sites, and intensity of musculoskeletal pain in adolescents with severe obesity; to evaluate associations between musculoskeletal pain and self-reported physical function as well as weight-related quality of life; and to evaluate the association between musculoskeletal pain and high-sensitivity C-reactive protein level. DESIGN, SETTING, AND PARTICIPANTS Teen-Longitudinal Assessment of Bariatric Surgery (Teen-LABS) is a prospective, observational study that collects standardized data on adolescents undergoing weight loss surgery at 5 US centers. We examined baseline data from this cohort between February 28, 2007, and December 30, 2011. We excluded adolescents with Blount disease and slipped capital femoral epiphyses. A total of 233 participants were included in these analyses. MAIN OUTCOMES AND MEASURES We assessed musculoskeletal pain and pain intensity of the lower back, hips, knees, and ankles/feet using the visual analog scale, categorizing musculoskeletal pain into lower back pain, lower extremity (hips, knees, and feet/ankles combined) pain, and no pain. We assessed self-reported physical function status with the Health Assessment Questionnaire Disability Index and assessed weight-related quality of life with the Impact of Weight on Quality of Life-Kids measure. We adjusted for sex, race, age at surgery, body mass index (BMI; calculated as weight in kilograms divided by height in meters squared), and clinical depressive symptoms in regression analyses. RESULTS Among the 233 participants, the mean (SD) age at surgery was 17.1 (1.56) years and the median BMI was 50.4. Participants were predominantly female (77%), white (73%), and non-Hispanic (93%). Among the participants, 49% had poor functional status and 76% had musculoskeletal pain. Lower back pain was prevalent (63%), followed by ankle/foot (53%), knee (49%), and hip (31%) pain; 26% had pain at all 4 sites. In adjusted analyses, compared with pain-free participants, those reporting lower extremity pain had greater odds of having poor physical function according to scores on the Health Assessment Questionnaire Disability Index (odds ratio = 2.82; 95% CI, 1.35 to 5.88; P < .01). Compared with pain-free participants, those reporting lower extremity pain had significantly lower Impact of Weight on Quality of Life-Kids total scores (β = -9.42; 95% CI, -14.15 to -4.69; P < .01) and physical comfort scores (β = -17.29; 95% CI, -23.32 to -11.25; P < .01). After adjustment, no significant relationship was observed between musculoskeletal pain and high-sensitivity C-reactive protein level. CONCLUSIONS AND RELEVANCE Adolescents with severe obesity have musculoskeletal pain that limits their physical function and quality of life. Longitudinal follow-up will reveal whether weight loss surgery reverses pain and physical functional limitations and improves quality of life.

A multisite view of psychosocial risks in patients presenting for bariatric surgery

The psychosocial health of adolescents with severe obesity (BMI ≥ 120% for age and gender) has only recently been the focus of empirical work.

Child Maltreatment and the Adolescent Patient With Severe Obesity: Implications for Clinical Care

OBJECTIVE To characterize prevalence and correlates of child maltreatment (CM) in a clinical sample of adolescents with severe obesity. METHOD Multicenter baseline data from 139 adolescents undergoing weight loss surgery (Mage = 16.9; 79.9% female, 66.2% White; Mbody mass index [BMI] = 51.5 kg/m(2)) and 83 nonsurgical comparisons (Mage = 16.1; 81.9% female, 54.2% White; MBMI = 46.9 kg/m(2)) documented self-reported CM (Childhood Trauma Questionnaire) and associations with psychopathology, quality of life, self-esteem and body image, high-risk behaviors, and family dysfunction.  RESULTS CM prevalence (females: 29%; males: 12%) was similar to national adolescent base rates. Emotional abuse was most prevalent. One in 10 females reported sexual abuse. For females, CM rates were higher in comparisons, yet correlates were similar for both cohorts: greater psychopathology, substance use, and family dysfunction, and lower quality of life. CONCLUSION While a minority of adolescents with severe obesity reported a CM history, they carry greater psychosocial burden into the clinical setting.

Maternal understanding of infant diabetes risk: Differential effects of maternal anxiety and depression

Purpose: This study describes maternal understanding of infant risk associated with newborn genetic screening for type 1 diabetes.Methods: Mothers of at-risk infants (n = 195), identified through the Prospective Assessment of Newborns for Diabetes Autoimmunity study, were notified of risk status by standardized script. Mothers participated in structured telephone interviews 1 and 3.5 months after notification that assessed understanding of infant risk and psychologic response to the news.Results: Most mothers (78.5%) were accurate in their understanding of infant risk at the initial interview, with a slight decline at the follow-up interview (73%). There was a significant increase in underestimation of risk from the initial (12%) to the follow-up interview (19%) (χ2 (1) = 6.0, P = .01). Mothers with less education, those from ethnic minority backgrounds, and those who were not married tended to be less accurate. Further, mothers who experienced more anxiety and fewer depressive symptoms in response to the news were more likely to be accurate. Likewise, underestimation of risk was associated with fewer anxiety and more depressive symptoms.Conclusion: This study highlights the complex picture of factors promoting maternal understanding of infant diabetes risk in a sample of mothers whose newborns had been identified as at increased risk for type 1 diabetes.

Participant and parent experiences in the oral insulin study of the Diabetes Prevention Trial for Type 1 Diabetes.

Objective:  To assess the experiences of participants and parents of children in the oral insulin study of the Diabetes Prevention Trial – Type 1.

Family factors that characterize adolescents with severe obesity and their role in weight loss surgery outcomes

To comprehensively assess family characteristics of adolescents with severe obesity and whether family factors impact weight loss outcomes following weight loss surgery (WLS).

Parent Distress and the Decision to Have Another Child After an Infant's Death in the NICU

Objective: To examine associations among parent perceptions of infant symptoms/suffering, parent distress, and decision making about having additional children after an infants death in the NICU. Design: Mixed‐methods pilot study incorporating mailed surveys and qualitative interviews. Setting: Midwestern Level IV regional referral NICU. Participants: Participants were 42 mothers and 27 fathers whose infants died in the NICU. Methods: Parents reported on infant symptoms/suffering at end of life and their own grief and posttraumatic stress symptoms. Qualitative interviews explored decision making about having additional children. Results: Approximately two thirds of bereaved parents had another child after their infants death (62% of mothers, 67% of fathers). Mothers who had another child reported fewer infant symptoms at end of life compared with mothers who did not (p = .002, d = 1.28). Although few mothers exceeded clinical levels of prolonged grief (3%) and posttraumatic stress symptoms (18%), mothers who had another child endorsed fewer symptoms of prolonged grief (p = .001, d = 1.63) and posttraumatic stress (p = .009, d = 1.16). Differences between fathers mirrored these effects but were not significant. Parent interviews generated themes related to decision making about having additional children, including Impact of Infant Death, Facilitators and Barriers, Timing and Trajectories of Decisions, and Not Wanting to Replace the Deceased Child. Conclusion: Having another child after infant loss may promote resilience or serve as an indicator of positive adjustment among parents bereaved by infant death in the NICU. Prospective research is necessary to distinguish directional associations and guide evidence‐based care.

Perspectives from bereaved parents on improving end of life care in the NICU.

Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care, there is a critical need to understand the experiences of these infants and their caregivers. Therefore, we conducted a retrospective study to examine parent perceptions of their infants’ care at EOL in the NICU between 3 months and 5 years of their infant’s death (M = 38.10 months, SD = 16.87). As part of this pilot study, 29 mothers and 16 fathers representing 31 infants participated in qualitative interviews assessing parents’ satisfaction with their involvement in their infants’ care and decision-making and their advice to NICU providers. Four themes emerged from interview data, including parents as partners in care, communication with the health-care team, relationships with staff, and bereavement support. Both mothers and fathers generally felt positive about their role in treatment decisions, relationships with staff, and memory-making activities. Parents noted areas for improvement, including team communication, anticipatory guidance, family inclusion at bedside, and bereavement care. This study provides a deeper understanding of parents’ experience with their infants at EOL and highlights opportunities for enhancing care. Pediatric psychologists can play an important role in facilitating communication between parents and the health-care team as well as providing bereavement support for these vulnerable families.