Bryan A. Sisk

Interventions to Improve HPV Vaccine Uptake: A Systematic Review

CONTEXT: The human papillomavirus (HPV) vaccine is a safe, effective cancer prevention method that is underutilized in the United States. Despite increased understanding of barriers to vaccination, rates remain low. Globally, developed and developing nations have achieved high rates of vaccination. OBJECTIVE: Identification of effective strategies is necessary to optimize uptake of the HPV vaccine. We systematically reviewed the literature for national and international interventions that have successfully increased HPV vaccine uptake. DATA SOURCES: We used a standardized protocol to search for articles published between January 1, 2006, and April 30, 2015, in 3 electronic databases: PubMed, Scopus, and Embase. STUDY SELECTION: We identified interventions designed to increase HPV vaccine uptake among adolescents and young adults aged 11 to 26 years. All study designs were acceptable. Only articles that included postintervention vaccination rates were included. DATA EXTRACTION: Two authors independently reviewed each article for data extraction and quality assessment. Interventions were classified according to the Community Preventive Service Task Force guide. RESULTS: Results were reported according to the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. Fifty-one articles met eligibility criteria: 2 informational interventions, 18 behavioral interventions, and 31 environmental interventions. Factors associated with HPV vaccine uptake were increased vaccine availability, decreased financial barriers, and interventions targeting both providers and patients. LIMITATIONS: Lack of consistent RE-AIM metric reporting, limiting our ability to assess intervention validity and quality. CONCLUSIONS: Population-based vaccination strategies that increased vaccine availability reached the greatest number of adolescents and were most successful in achieving high rates of vaccination.

Prognostic Disclosures to Children: A Historical Perspective.

Prognostic disclosure to children has perpetually challenged clinicians and parents. In this article, we review the historical literature on prognostic disclosure to children in the United States using cancer as an illness model. Before 1948, there was virtually no literature focused on prognostic disclosure to children. As articles began to be published in the 1950s and 1960s, many clinicians and researchers initially recommended a “protective” approach to disclosure, where children were shielded from the harms of bad news. We identified 4 main arguments in the literature at this time supporting this “protective” approach. By the late 1960s, however, a growing number of clinicians and researchers were recommending a more “open” approach, where children were included in discussions of diagnosis, which at the time was often synonymous with a terminal prognosis. Four different arguments in the literature were used at this time supporting this “open” approach. Then, by the late 1980s, the recommended approach to prognostic disclosure in pediatrics shifted largely from “never tell” to “always tell.” In recent years, however, there has been a growing appreciation for the complexity of prognostic disclosure in pediatrics. Current understanding of pediatric disclosure does not lead to simple “black-and-white” recommendations for disclosure practices. As with most difficult questions, we are left to balance competing factors on a case-by-case basis. We highlight 4 categories of current considerations related to prognostic disclosure in pediatrics, and we offer several approaches to prognostic disclosure for clinicians who care for these young patients and their families.

Prognostic disclosures over time: Parental preferences and physician practices: Prognostic Disclosures to Parents

Although the majority of parents of children with cancer say they want prognostic information, to the authors’ knowledge little is known regarding how their desire for and experiences with prognosis communication change over time.

Communication in pediatric oncology: State of the field and research agenda

From the time of diagnosis through either survivorship or end of life, communication between healthcare providers and patients or parents can serve several core functions, including fostering healing relationships, exchanging information, responding to emotions, managing uncertainty, making decisions, and enabling patient/family self‐management. We systematically reviewed all studies that focused on communication between clinicians and patients or parents in pediatric oncology, categorizing studies based on which core functions of communication they addressed. After identifying gaps in the literature, we propose a research agenda to further the field.

The Truth about Truth-Telling in American Medicine: A Brief History

Transparency has become an ethical cornerstone of American medicine. Today, patients have the right to know their health information, and physicians are obliged to provide it. It is expected that patients will be informed of their medical condition regardless of the severity or prognosis. This ethos of transparency is ingrained in modern trainees from the first day of medical school onward. However, for most of American history, the intentional withholding of information was the accepted norm in medical practice. It was not until 1979 that a majority of physicians reported disclosing cancer diagnoses to their patients. To appreciate the current state of the physician-patient relationship, it is important to understand how physician-patient communication has developed over time and the forces that led to these changes. In this article, we trace the ethics and associated practices of truth-telling during the past two centuries, and outline the many pressures that influenced physician behavior during that time period. We conclude that the history of disclosure is not yet finished, as physicians still struggle to find the best way to share difficult information without causing undue harm to their patients.

Longitudinal parental preferences for late effects communication during cancer treatment

Few studies have investigated parent preferences for late effects communication during pediatric cancer treatment. We used questionnaire data to assess whether parental preferences for late effects information change over the year after diagnosis. Most parents found this information to be very/extremely important at baseline, assessed soon after diagnosis, (94%, 153/162), 4 months (91%, 147/162), and 12 months (96%, 156/163). Similarly, most parents wanted as much detail as possible about late effects at baseline (85%, 141/165), 4 months (87%, 144/165), and 12 months (83%, 137/165). Parents of children with favorable prognoses preferred more details at baseline (OR 2.94, 1.18–7.31, P = 0.02) than parents whose children had less favorable prognoses.

Navigating Decisional Discord: The Pediatrician’s Role When Child and Parents Disagree

When a child and parents disagree about a medical decision, there are 3 ethical models for the role of the pediatrician: deference, advocative, and arbitrative. From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician’s role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child’s preference in decision-making so long as the child’s decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.

A Common Thread: Pediatric Advocacy Training

“There wasn’t any insulin left at home, so I skipped a day or two,” Erika explained. The thin teenage girl sat tucked between white hospital linens. Two days earlier, she had been rushed to the emergency department by ambulance after a neighbor found her unconscious at a park near her home. The routine of stabilization and correction of electrolyte abnormalities went smoothly, just like it had on her several previous ICU admissions. She was lucky to be alive, yet again. Each of Erika’s past admissions for diabetic ketoacidosis (DKA) had started with the same story: not checking her blood sugars, and not taking all of her insulin. Erika’s explanations were always guarded, only hinting at her difficult reality. Her mother, an undocumented immigrant raising 4 daughters on her own, worked 2 jobs to keep the family afloat. They often could not afford the fresh foods that Erika’s doctors recommended, much less all of her insulin and glucometer supplies. They frequently missed appointments because they did not have the money for transportation to clinic, or because her mother could not take time off work for fear of losing her job. Although they wanted to help, Erika’s medical team was left managing her health by a strategy of intermittent crisis intervention. Erika’s nurses and diabetes educator reminded her of the importance of home glucose monitoring; her social worker reviewed her paperwork for Medicaid and food stamps; her pediatric endocrinologist scheduled a follow-up appointment … Address correspondence to Kristin Schwarz, MD, MA, Department of Pediatrics, Boston Medical Center, 850 Harrison Ave, Boston, MA 02118. E-mail: kristin.schwarz{at}childrens.harvard.edu

Sources of parental hope in pediatric oncology

Hope is a multidimensional concept that is important for all parents of children with cancer. However, most work has focused on advanced cancer and poor prognoses. We examined hopes of all parents of children with cancer longitudinally during the first year of treatment.

Time Will Tell

The sac was empty on the ultrasound screen. There was no heartbeat, no recognizable shape, just an empty black space. After saving the image, the ultrasonographer continued with her measurements in silence. I put my hand on my wife’s shoulder, watching her hold back the tears. I was thankful that we had not told anyone we were expecting. “Maybe we are just a little bit early,” said the ultrasonographer as she walked out of the room, forcing a smile. As a physician, I knew better. I knew that it was almost certainly a miscarriage. I knew that my wife’s medical chart would be permanently tattooed with that ugly terminology: spontaneous abortion. We moved down the hallway to the examination room, feeling as though everyone was staring at us. A few minutes later, the physician came in and reviewed the images. “When we look at the pictures, there is nothing in the gestational sac ... yet. But let’s not jump to conclusions. We may just be early,” she said. I did the math in my head, the same calculation that had haunted me since the bleeding started. I pushed back against her offer of hope, trying to hold back the frustration in my voice. She responded kindly. “Well, sure, there is a good chance that you have lost the pregnancy, but we don’t know for sure. Only time will tell. Let’s just wait and see what the tests show next week.” I felt a sting as I remembered the many times I had offered similar encouragements to patients and their families. We don’t know yet if your son has leukemia. It could just be a bad virus. Let’s wait and see. Just hope for the best. We can’t yet be sure if this is a genetic disorder. There are many reasons why certain babies don’t grow quickly. My hope is that he will turn around soon while we wait for the test results to return. The brain MRI looks pretty bad, but it’s hard to tell just how that will affect her in the long run. She will likely have some deficits, but baby brains have a lot of plasticity. Only time will tell. Sometimes I believed what I was saying, but other times I was simply offering a diversion until there was irrefutable evidence. Rather than preparing families for what was likely to happen, I offered hope in something I did not fully believe. When the truth was revealed, it fell with a thud. Uncertainty can be a physician’s best friend, his or her “get-out-of-jail-free” card for difficult discussions. The appeal to hope can serve the dual purpose of momentarily allaying a patient’s fears while buying time for the health care professionals, an easy way to punt a conversation down the road. But my wife and I were not in the market for hope that day. “Are you saying that you really think she could be pregnant?” I asked with strained politeness. “Well ... it is hard to tell, but ... I would say that there is a good chance that you may have lost the pregnancy. I am just saying that we cannot be certain at this point.” “Have you ever seen a couple in our situation end up with a viable pregnancy? Is there really much of a chance?” I asked. “Well ... at this point, I would bet that you lost the pregnancy.” We absorbed the blow, sad at the news that we already knew, but free from the pain of anticipation. That evening, we ate a lot of ice cream and began the next phase of our lives, facing the truth with open eyes. Hope is a powerful tool that physicians have wielded incautiously throughout the history of medicine. In the past, many physicians took it upon themselves to conceal bad diagnoses from their patients with evasive statements or blatant lies. Physicians felt obligated to protect their patients from the harm of painful truths, fearing that the loss of hope would inherently worsen their patient’s chances of survival. An excerpt from an 1898 article crystallized this sentiment: “In regard to cancer, the consensus of opinion is that patients be kept in ignorance of the nature and probable outcome of the disease as long as possible, in this way obviating the severe mental depression which invariably accompanies such knowledge.”1 This mentality persisted in medicine until fairly recently. A study from 1961 showed that more than 90% of physicians routinely avoided telling their patients if they had a terminal diagnosis.2 However, by the late 1970s medicine was transitioning from paternalism to an emphasis on autonomy and patients’ rights. As a result, physicians became more likely to tell their patients the truth.3 This trend toward honesty has persisted in medicine, but the truth can be told in shades. The content of conversations may have changed, but the tone and emphasis physicians take during these discussions can still obscure the truth, especially when any amount of uncertainty is present. As one researcher recently noted, “we sometimes respond to this uncertainty by discussing prognosis in vague or overly optimistic terms, waiting for patients to ask for prognostic information, avoiding discussions of prognosis unless the patient is insistent, and focusing conversation on treatment rather than on outcomes.”4 While hope is integral to the patient-physician relationship, it is a tool that must be used cautiously. If not, it can prolong a patient’s anxiety and suffering without changing the outcome. An empty gestational sac either is or is not a miscarriage. A mass either is or is not cancer. The pathologic reality of a diagnosis is impervious A PIECE OF MY MIND