Jennifer Linebarger

Pediatric Palliative Care: Current Evidence and Evidence Gaps

ospice and palliative medicine (HPM) is an emerging medical subspecialty initially recognized by the American Board of Medical Specialties in 2006. As the Institute of Medicine reported in 2014, health care delivery and the challenges of care at the end of children’s lives have evolved significantly over the past 15 years. The last decade has seen the growth of pediatric palliative care (PPC) programs at children’s hospitals and a transformation of the field. Fifty percent of children’s hospitals nationwide have a PPC program, with a peak in new program development occurring in 2008. New programs are almost immediately impactful, experience high referral volumes, and must quickly expand their workforce. Although HPM has a growing body of literature, the evidence for PPC appears to lag behind the clinical growth. Here we provide a focused and practical summary of evidence in pediatric HPM as a primer for those practicing in other subspecialties. Specifically, we review evidence by focusing on a few of the domains in HPM : (1) communication and psychosocial support; (2) pain and symptom management; (3) end-of-life care; and (4) ways to build a better health care system.We hope to strengthen understanding and partnerships between HPM and non-HPM clinicians and investigators and thereby improve patient care for children with serious illnesses.

Accessing general and sexual healthcare: experiences of urban youth

Urban adolescents face many barriers to health care that contribute to health disparities in rates of sexually transmitted infections and unintended pregnancy. Designing interventions to increase access to health care is a complex process that requires understanding the perspectives of adolescents. We conducted six focus groups to explore the attitudes and beliefs about general and sexual health care access as well as barriers to care among urban, economically disadvantaged adolescents. Participants first completed a written survey assessing health behaviors, health care utilization, and demographics. The discussion guide was based on the Theory of Planned Behavior and its constructs: attitudes, subjective norms, and perceived behavioral control. Transcripts of group discussions were analyzed using directed content analysis with triangulation and consensus to resolve differences. Fifty youth participated (mean age 15.5 years; 64% female; 90% African American). Many (23%) reported missed health care in the previous year. About half (53%) reported previous sexual intercourse; of these, 35% reported no previous sexual health care. Youth valued adults as important referents for accessing care as well as multiple factors that increased comfort such as good communication skills, and an established relationship. However, many reported mistrust of physicians and identified barriers to accessing care including fear and lack of time. Most felt that accessing sexual health care was more difficult than general care. These findings could inform future interventions to improve access to care and care-seeking behaviors among disadvantaged youth.

Brief behavioral intervention to improve adolescent sexual health: a feasibility study in the emergency department

Objective Although emergency department (ED) visits offer an opportunity to deliver brief behavioral interventions to improve health, provision of ED-based interventions targeting adolescent sexual health is uncommon. The objectives for this study were to evaluate the feasibility and preliminary effects of a novel sexual health service intervention for adolescents. Methods In this cross-sectional feasibility study, sexually active patients aged 14 to 19 years presenting to a Midwestern pediatric ED were recruited to receive an intervention to improve sexual health. The intervention, based on motivational interviewing (MI), included agenda setting, exploration of behaviors, a decisional balance exercise, tailored feedback, and provision of personalized health services (including condoms, prescription for emergency contraception, urine testing for Chlamydia trachomatis and Neisseria gonorrheae, and referral to the hospital-affiliated adolescent clinic). Data were collected before and after intervention administration and at a 3-month follow-up telephone interview. Surveys assessed sexual risk behaviors, satisfaction with the intervention, health care use, and demographics. Feasibility criteria were (1) subject-rated interventionist fidelity to MI principles (Likert scale 1 [strongly agree] to 4 [strongly disagree]), (2) subject satisfaction (Likert scale 1 [not at all] to 5 [very]), and (3) session duration (minutes, recorded by the interventionist). A secondary outcome was the proportion of subjects who completed at least 1 health service. Services provided at the adolescent clinic were determined by an electronic medical record review. Comparisons of responses between sex subgroups were analyzed using &KHgr;2 test. Results From August to November 2012, 69 adolescents were approached, 66 (96%) completed the screening survey, and 24 (37%) reported previous sexual activity. Of those, 20 (83%) agreed to participate. The mean (SD) age was 16.2 (1.4) years; 60% were female. Most (78%) reported that the interventionist maintained high fidelity to MI principles and most (80%) were very satisfied with the intervention. Mean (SD) intervention length was 15.7 (2.2) minutes. Most subjects (65%) accepted 1 or more health services, including 42% who completed clinic follow-up. In the ED or the referral clinic, the following services were provided to the subjects: condoms (n = 11), emergency contraception prescription (n = 5), C. trachomatis/N. gonorrheae testing (n = 4), hormonal birth control provision (n = 2), and human immunodeficiency virus testing (n = 3). Fifteen subjects (75%) were reached for the 3-month follow-up, and condom use was maintained by 67% of those reporting sexual activity. Conclusions This study demonstrated the feasibility and potential utility of an MI-based service navigation intervention to connect youth with point-of-care services as well as resources for ongoing sexual health needs.

Adolescents and young adults with life-threatening illness: special considerations, transitions in care, and the role of pediatric palliative care.

This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong

Advances in prenatal diagnosis create a unique set of clinical ethics dilemmas. Doctors routinely obtain genetic screening, radiologic images, and biophysical profiling. These allow more accurate diagnosis and prognosis than has ever before been possible. However, they also reveal a wider range of disease manifestations than were apparent when prenatal diagnosis was less sophisticated. Sometimes, the best estimates of prognosis turn out to be wrong. The infant’s symptoms may be less severe or more severe than anticipated based on prenatal assessment. We present a case in which a prenatal diagnosis was made of severe osteogenesis imperfecta, leading to a decision to induce delivery at 31 weeks. On postnatal evaluation, the infant’s disease did not appear to be as bad as had been anticipated. We discuss the ethical implications of such diagnostic and prognostic errors.