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Hematology and Oncology

New researcher brings focus on DIPG treatment

_{Rintaro Hashizume, M.D., Ph.D., is researching intranasal delivery for DIPG medication.}

In 2023, the University of Alabama at Birmingham (UAB) Department of Pediatrics welcomed Rintaro Hashizume, M.D., Ph.D., a scientist specializing in pediatric neuro-oncology. Hashizume, an associate professor of hematology and oncology, brings a commitment to pediatric brain tumor research, focusing specifically on the daunting challenge presented by diffuse intrinsic pontine glioma (DIPG).¹

DIPG is an aggressive brain tumor that primarily affects children and has a grim prognosis, with most patients succumbing to the disease within 12 months. What makes DIPG particularly challenging is its location in a vital area of the brain that controls breathing and heartbeat, rendering surgery impractical.

Traditional chemotherapy faces significant hurdles in treating DIPG, primarily due to the blood-brain barrier and the lack of genomic alterations in pediatric brain tumors. However, in 2012, genome-wide sequencing identified a specific mutation in DIPG, providing a crucial target. Hashizume’s lab has been developing therapies that specifically target this mutation, particularly through epigenetic targeting therapy.

One groundbreaking aspect of Hashizume’s research is intranasal delivery for drug administration. This method bypasses the blood-brain barrier, offering a non-invasive and convenient alternative method of drug delivery to the brain tumor. Hashizume’s team is exploring liposome-encapsulated drugs delivered intranasally, aiming to enhance the effectiveness of radiation therapy for the treatment of DIPG.

Intranasal delivery enables the liposome-encapsulated drug to enter the brain through specific neural pathways that bypass the blood-brain barrier. The liposome carrier protects the therapeutic drug as it passes through nasal membranes; when it gets into the brain, the liposome opens to disperse the drug. “Using this method, the drug can be delivered quickly to target areas,” Hashizume said.

While emphasizing the importance of mechanistic research, Hashizume acknowledges the urgency of translating discoveries into clinical applications. He envisions intranasal delivery becoming a feasible option for clinical trials, stressing the need for a swift transition from preclinical studies to clinical trials, especially considering the critical nature of pediatric brain tumors.

“I think we’ll need a combination treatment approach using radiation, since that’s a current standard therapy in DIPG that can help provide transient relief from the disease,” Hashizume said. “Clinical trials are needed to discover how we can enhance the radiation’s effect in combination with the intranasally delivered drug.”

Hashizume’s dedication to pediatric brain tumors spans more than 15 years. Originally a physician-scientist in Japan, he transitioned to the University of California San Francisco (UCSF) with a focus on adult brain tumors. However, a pivotal moment led him to shift his research focus exclusively to pediatric neuro-oncology. The catalyst for this change was his long-standing connection with Girish Dhall, M.D., director of the Division of Pediatric Hematology, Oncology, and Blood and Marrow Transplantation at Children’s of Alabama, who played a crucial role in recruiting him to the hospital.

With the support of organizations like the Pediatric Brain Tumor Consortium, Hashizume aims to accelerate the translation of research into clinical practice. As research progresses, the potential for new, effective treatments for these devastating tumors becomes increasingly tangible.

This research was supported by a grant from Prayers From Maria Children’s Glioma Cancer Foundation. Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author(s) and do not necessarily reflect the views of the Prayers from Maria Children’s Glioma Cancer Foundation. ↩︎

January 25, 2024 by childrensal

Hematology and Oncology

Thrombosis Program Growing Rapidly

_{Illustration of a blood clot (Stock image)}

With increased rates of blood clots in children—especially those who are hospitalized—the need for a dedicated pediatric thrombosis program at Children’s of Alabama came to fruition five years ago. Since then, the program has made its mark by creating institutional guidelines for venous thromboembolism (VTE) management, developing educational materials for patients and families, and participating in prestigious clinical trials.

“We’ve grown tremendously—it didn’t take long to get the word out,” said Children’s pediatric hematologist Hope Pritchett Wilson, M.D., who is also an assistant professor in the Division of Hematology & Oncology at the University of Alabama at Birmingham (UAB). “Most of it is through word of mouth alone.”

This past year proved record-breaking for the program, exceeding the yearly average of 50 to 60 new thrombosis diagnoses in young patients. What accounts for its growth? Wilson explained that advances in critical care for the sickest children, which often involves placing a central venous catheter, makes clotting more likely. VTE awareness has also grown, enabling clinicians here and elsewhere to better pinpoint affected children.

But managing these children’s care is often a long-term prospect. Girls, for example, may be unable to use estrogen-based medications for menstrual problems or birth control, while student-athletes on blood thinners may need to refrain from contact sports due to an increased bleeding risk. A small subset of young patients will need lifelong anticoagulation therapies.

At Children’s dedicated thrombosis clinic, held every Thursday, clinicians are now receiving referrals from all across the city and state. A multidisciplinary staff that includes specialists in hematology and pharmacy as well as a nurse practitioner, nurse coordinator and research nurse means the team can “all bring different expertise and lived experiences to think of a child holistically,” Wilson said. “One of the more recent collaborations we’ve established, with interventional radiologists, offers a direct path to patients who may need further intervention and may benefit from various procedures.”

The team’s mounting expertise has empowered them to develop institutional guidelines for VTE management tailored to patients here and create more effective educational materials for patients and families. The clinic has also participated in prestigious clinical trials—including a pivotal international multi-center study comparing outcomes with six weeks versus three months of VTE treatment in children—that have proven practice-changing.

“As we see results, we can implement them directly,” Wilson said. “Our names are in the conversation now regarding different trials because we provide quality care, have high patient volume and successfully enroll children into clinical trials.”

Moving forward, Wilson said the program may begin other forms of outreach in an attempt to pinpoint all children who might benefit from its expertise and efforts. Staff members are planning to survey families whose children are seen in the clinic about gaps or barriers to ensure more equitable care.

“Now that we’ve established ourselves, let’s go back and do some advertising because there are likely some children we’re missing,” she said. “We want to service local and statewide communities as best we can. If more blood clots are happening nationally, there are probably more happening locally, and we want to be positioned to help these children.”

January 25, 2024 by childrensal

Hematology and Oncology

Increasing HPV Vaccination Rates in Young Cancer Survivors

A Children’s of Alabama researcher is working to improve HPV vaccination rates among childhood cancer survivors.

Childhood cancer survivors are significantly less likely to receive the HPV vaccine than their peers without cancer, despite having a three times higher risk of developing HPV-related cancers later in life[1]. A new initiative at Children’s of Alabama aims to improve vaccination rates, so patients can be protected long into their survivorship.

According to an HPV vaccine study led by Wendy Landier, Ph.D., CRNP, uptake among childhood cancer survivors was only about 24% compared to more than 50% in the general population. Although it’s not clear why young cancer survivors are more at risk for HPV-related cancers, it is likely due to effects from radiation and chemotherapy.

“One major reason for low vaccine uptake is that cancer survivors often don’t get a recommendation from their healthcare provider to receive the vaccine,” said Landier, the deputy director of the Institute for Cancer Outcomes and Survivorship at Children’s and the University of Alabama at Birmingham (UAB). Without that recommendation, there is a tenfold higher risk the young cancer survivor will not get the vaccine. This could be due to gaps in follow-up care after cancer treatment, Landier said, when preventive health measures such as vaccination may be overlooked. “When a child has cancer, they are often followed in their cancer center or in their pediatric hematology oncology center for many years beyond their treatment,” she said. “Sometimes the focus of that follow-up care is on the disease and not prevention.”

The vaccine, which helps prevent cervical, anal, penile and throat cancers, is recommended for everyone ages 9 to 26, and should be considered for people up to age 45. But, Landier said, primary care providers may also be uncertain about whether it’s OK to vaccinate these children. Landier and her team showed the vaccine is safe and provides a similar level of protection against HPV in pediatric cancer survivors when compared with people of similar age in the general population.[2]

Their study also showed, however, that the main reasons cancer survivors and their parents refused to participate in the trial testing the safety and efficacy of the vaccine were health beliefs and family decisions—for example, some had already decided that the child would not receive the HPV vaccine. Vaccine-related information deficits can influence vaccine refusals. For example, some parents or patients may not understand that males can benefit from the vaccine or that it should be given before a person becomes sexually active.[3]

To improve vaccination rates in pediatric cancer survivors, Landier is currently leading a study to test an intervention called HPV PROTECT.[4] The goal is to educate pediatric oncology providers on the importance of recommending the vaccine. The intervention focuses on communication training and tools to facilitate vaccine access. Investigators then monitor the vaccination rates in the clinic and let the providers know how they’re doing.

Early results are promising, Landier said, with pediatric oncology providers showing enthusiasm for the intervention. The intervention shouldn’t be limited to pediatric oncologists, however. “It can benefit all pediatric providers,” she said.

“Vaccines are such an incredibly important tool in helping our survivors to stay healthy across the lifespan,” Landier said. “And we certainly hope in the future there’ll be other vaccines to even prevent the original cancers.”

[1] Klosky JL, Hudson MM, Chen Y, Connelly JA, Wasilewski-Masker K, Sun CL, Francisco L, Gustafson L, Russell KM, Sabbatini G, Flynn JS, York JM, Giuliano AR, Robison LL, Wong FL, Bhatia S, Landier W. Human Papillomavirus Vaccination Rates in Young Cancer Survivors. J Clin Oncol. 2017 Nov 1;35(31):3582-90. Epub 20170824. doi: 10.1200/jco.2017.74.1843. PubMed PMID: 28837404; PMCID: PMC5662846.

[2] Landier W, Bhatia S, Wong FL, et al. Immunogenicity and safety of the human papillomavirus vaccine in young survivors of cancer in the USA: a single-arm, open-label, phase 2, non-inferiority trial. Lancet Child Adolesc Health. 2022;6(1):38-48. doi:10.1016/S2352-4642(21)00278-9

[3] Cherven B, Klosky JL, Keith KE, Hudson MM, Bhatia S, Landier W. Reasons for refusal of the human papillomavirus vaccine among young cancer survivors. Cancer. 2023;129(4):614-623. doi:10.1002/cncr.34521

[4] Landier W, Bhatia S, Richman JS, et al. Implementation of a provider-focused intervention for maximizing human papillomavirus (HPV) vaccine uptake in young cancer survivors receiving follow-up care in pediatric oncology practices: protocol for a cluster-randomized trial of the HPV PROTECT intervention. BMC Pediatr. 2022;22(1):541. doi:10.1186/s12887-022-03562-1

August 24, 2023 by childrensal

Hematology and Oncology

At the Intersection of Sickle Cell Disease and Asthma

A child uses an inhaler. (Stock photo)

While many people know of sickle cell disease (SCD), it may be surprising to learn that there is a high prevalence of co-occurring asthma among children with SCD. Brandi Pernell, DNP, has been researching social determinants of health that impact young patients with a double diagnosis.

“While I was pursuing different strategies for improvements among the asthma population, I discovered a connection between environmental stress and asthma,” said Pernell, an assistant professor in hematology and oncology at Children’s of Alabama and the University of Alabama at Birmingham (UAB). “When you look at the general population in comparison to the sickle cell population, you’re going to see that more children with sickle cell have a diagnosis of asthma because these two conditions have some overlapping inflammatory physiological pathways. That in itself is going to increase the risk of having asthma along with sickle cell.”

Asthma affects oxygen levels, especially among those who are undiagnosed or who are diagnosed but whose disease isn’t fully managed, Pernell said. And low oxygen is a risk factor for red-cell sickling. Patients with both asthma and SCD experience higher rates of pain and acute stress as a result.

Pernell estimates that she provides clinical care for 80 to 90% of young patients in the area who have both SCD and asthma, as well as any patient hospitalized with acute chest syndrome, an acute lung complication. “I have an acute care follow-up clinic where I see anybody who has been hospitalized with acute chest syndrome within four weeks of discharge to make sure that they have focused sickle cell management and any asthma management that needs to take place to reduce the risk of it happening again,” she said.

Another major component of care, Pernell believes, is patient education. She works with community-based organizations and the Sickle Cell Disease Foundation to provide health education. She also gives patients and their families handouts with up-to-date information for disease management. “I try to employ a multimodal approach to education, but I think that the best method is still face-to-face interaction,” she said. “After all the clinical care is done, I take time to see if there are any questions from patients. I explain why I’m recommending this therapy or why this therapy is so important and how it works exactly in your body—because I think that improves adherence if you understand why you need it—or what can happen if you don’t take a medicine or how it could further impact your health in a negative way.”

Support for her patients is also multi-modal. Pernell relies on assistance from a social worker who can lock in community services as needed. She also works with the Children’s of Alabama school liaison to ensure patients have comprehensive support. “By school age, about 30% of children with sickle cell will have suffered a silent stroke, which can impact the child neurocognitively and lead to a decline in academic performance,” Pernell said. She and the liaison also make sure that each patient has a 504 plan in place for important classroom accommodations, such as being able to maintain hydration and avoid temperature extremes to avoid a sickle cell crisis.

The research Pernell has undertaken looks closely at social determinants of health and those factors within a patient’s control that can improve symptoms. “We are focusing on lifestyle interventions,” she said. “Are there dietary changes (that can reduce symptoms?) Are there different stress reduction tactics that can be taken or things prenatally that moms can do?”

These and other research questions are also guided by input from the patients themselves. Pernell believes that patients, as the ultimate end users of any research discoveries, must be invested in the research planning process and study design. “We need to make sure that the outcomes that we’re pursuing are the outcomes that the patients themselves care about.”

August 24, 2023 by childrensal

Hematology and Oncology

Pediatric and Adult Physicians Collaborating to Improve Cancer Survival Among Adolescents and Young Adults

Dr. Julie Wolfson is the founder of the Adolescent and Young Adult Oncology and Oncofertility Program at Children’s of Alabama.

It might surprise many people to learn that cancer survival rates have been showing continual improvement in children under 14 and mature adults, but not among the 15-to-39-year-old age group. The Adolescent and Young Adult (AYA) Oncology and Oncofertility Program at Children’s of Alabama is aiming to change that.

When Julie Wolfson, M.D., MSHS, pediatric oncologist at Children’s of Alabama and founder of the AYA Program, was learning about healthcare delivery a decade ago, she noticed the survival disparities for adolescents and young adults and began to investigate how it could be addressed. She researched registry data and found that across a host of different diagnoses, survival rates were better when patients treated at a National Cancer Institute-designated Comprehensive Cancer Center.

She began to focus her research on understanding why. And she became determined to ensure the highest level of care for adolescents and young adults at Children’s of Alabama. In 2018, using seed money from the Hyundai Hope on Wheels Foundation, Wolfson launched the AYA program, which provides clinical treatment support and an array of psychosocial support services vital for patients in the adolescent to young adult stage of life.

“These patients are in a really vulnerable time in their social, emotional and physical development,” Wolfson says. “While their friends are at college, they have to come home. They were independent, and suddenly, they’re back under their parents’ roof, or they’re working and they don’t have help. When their peers keep growing and doing normal young adult things, they’re stalled, and they don’t feel well.”

To address these issues, the AYA Program offers wraparound, multidisciplinary services. “An AYA social worker meets with every patient to figure out what they can help with that is AYA-specific. They also connect with their assigned hematology-oncology social worker and the Hope and Cope Program for any psychosocial support needs or provides resources outside the institution,” Wolfson explains.

Preserving Fertility for Young Adults with Cancer

Unfortunately, getting treatment for cancer can put patients at risk for not being able to have their own children later on. One of the things that Wolfson is trying to do through her partnership with the director of fertility preservation is increase the number of patients who undergo fertility preservation. “The director and I are very much partners in this, and she bends over backwards to get our kids in,” Wolfson said. The oncofertility program allows young patients to bank sperm or extract and preserve eggs. Soon, they will also be able to take advantage of a relatively new process that allows for cryopreservation of ovarian tissue that can be re-implanted later when they are ready to have children.

Wolfson also reports that survival improvement in the AYA group is correlated to clinical trial participation, so enrolling AYA patients into as many clinical trials as possible is a key focus area for the program. “Our treatment and our care of these patients only has a chance to get better if they’re treated in a research study,” Wolfson said. “When you look at pediatric oncology, well over 70% to 75% of the patients are enrolled in a clinical trial, but it’s very different the older patients get.” As the patients age, the proportion of those who are enrolled in clinical trials drops. For this reason, Wolfson tries to ensure the AYA group has access to appropriate trials.

Ultimately, everyone’s mission is to ensure that each patient gets the best treatment possible. “This age group can walk through either door—pediatric oncology or adult oncology,” Wolfson said. As a result, the pediatric oncology team works hand-in-hand with their counterparts on the adult oncology staff to make sure all patient care options are examined. This interdisciplinary approach is carried out at monthly tumor board meetings and with paired disease specialists—one from the pediatric side, one from the adult side—who bring a deeper understanding to leukemia, lymphoma, sarcoma, neuro-oncology, genitourinary and gynecological oncology and more. Radiologists, pathologists and other specialists also bring their expertise to bear.

Since AYA’s launch, Wolfson has received investments from the O’Neal Comprehensive Cancer Center and the Vestavia Hills High School service-learning project, RISE.

“It’s outstanding to have the support of the leadership from Children’s of Alabama, as well as University of Alabama at Birmingham and the O’Neal Comprehensive Cancer Center,” Wolfson said. “It’s pretty unique.”

January 16, 2023 by childrensal

Hematology and Oncology

Improving End-of-Life Care for Pediatric Cancer Patients

Dr. Emily Johnston is a pediatric oncologist at Children’s of Alabama.

Almost 3,000 children die from cancer each year in the United States. But in pediatrics, unlike adult care, there are no quality measures for end-of-life care. That’s changing, however, thanks to the pioneering work of Children’s of Alabama pediatric oncologist Emily Johnston, M.D., M.S.

“My goal is to establish quality measures for end-of-life care for children with cancer and then leverage those quality measures to reduce disparities in care,” Johnston said.

The mission comes from her time as a fellow, when she saw many deaths that did not go the way she believes patient families would have wanted. Systemic issues, like the inability to get a child into hospice given the lack of pediatric hospices, presented significant barriers.

In researching pediatric end-of-life issues, she found significant variation in care for underrepresented minorities. For instance, Hispanic children with cancer are more likely than non-Hispanic white children to die in the hospital and have medically intense end-of-life care. “When I would say this to people, they would tell me, ‘It’s okay, it’s what they want,’” Johnston said. But through dozens of interviews with bereaved parents, she found that was not the case.

During one series of interviews with 28 parents of 24 children who died of cancer, most parents said they preferred a home death and did not want their child dying in the restrictive environment of the intensive care unit (ICU). While they wanted their children to die peacefully, parents didn’t want to stop cancer treatment. They also told interviewers that they needed more education around end-of-life issues and more support around non-medical issues, such as financial challenges, so they could focus on their child. Parents also talked about a sense of abandonment after their child died.

Johnston and her colleagues then brought together a panel of nine experts in pediatric oncology, including representatives from nursing, social work and palliative care, to develop quality measures for end-of-life care for children with cancer, much like those available for adults. The 16 measures fit into four categories:

Avoiding medically intense end-of-life care
The location of death
Hospital policies/programs
Supportive care

For instance, one indicator measures the proportion of children who were intubated during the last 14 days of life, given that intubation usually increases suffering. Another measures the proportion of children who received palliative care or hospice support in the last month of life since both offer an additional layer of support for families, help alleviate suffering and facilitate the identification of the goals of the family and child.

Hospital policies designed to improve the patient end-of-life experience included having pediatric palliative care services and a bereavement program available and eliminating visiting-hour restrictions, including age and number of visitors. Johnston and her colleagues are now working on validating and implementing the quality measures.

But, she said, “that research is a very big-picture; it’s not going to affect care tomorrow.” So, she partnered with University of Alabama at Birmingham palliative care physician Susan Buckingham, M.D., to improve access to palliative care for patients with high-risk cancers such as some brain and solid tumors.

Today, instead of starting palliative care near the end of a child’s life (and then only if the parent or physician requests it), families meet with Buckingham at diagnosis and have access to palliative care services throughout their child’s illness. Meanwhile, Buckingham attends oncology staff meetings and is now part of the multidisciplinary team treating those patients. She can spot unmet needs early in the process and work collaboratively with the nurses, social workers and other clinicians caring for the child and family. “We’ve done interviews with 12 families who had early palliative care about their experiences, and the feedback has been really positive,” Johnston said. As one family told her, “I didn’t really understand what palliative care did until we needed it, and I was so glad I already knew them by then.”

January 16, 2023 by childrensal

Hematology and Oncology, Inside Pediatrics

New BMT Program Director Focused on Expanding Immunotherapy

_{^{Joseph Chewning, MD, is the clinical director of the Pediatric Blood and Marrow Transplantation program at Children’s of Alabama.}}

As Joseph Chewning, MD, takes over as the clinical director of the Pediatric Blood and Marrow Transplantation (BMT) Program at Children’s of Alabama, he has an eye toward the program’s future, especially when it comes to immunotherapy.

It’s a field that Chewning says is growing very quickly. CAR-T cell therapy, in particular, is changing the paradigm for blood cancer treatment. With CAR-T, the child’s own immune cells are programmed to recognize and destroy a patient’s cancerous cells. Children’s became certified in 2018 to provide the therapy to children and young adults with recurrent acute lymphoblastic leukemia (ALL). As the new clinical director of the pediatric BMT program, Chewning wants to make sure Children’s can use CAR-T and other immunotherapies to help as many patients as possible.

“That’s really the goal for the program going forward—to continue to expand the novel treatments that we can provide for the children of Alabama, including cellular therapies,” he said.

One of the major advantages of immunotherapies is that, while they do have side effects, they’re typically less toxic than bone marrow transplant. For that reason, Chewning believes they’ll continue to become more common.

“At some point I think these cellular therapies will eclipse bone marrow transplant in usefulness,” he said.

Chewning’s focus on immunotherapies is one part of his overall goal of providing the best quality care for patients in the safest way possible.

“It’s really important to me that we fulfill the responsibility we have to the children of our state,” he said. Chewning wants to bring cutting-edge therapies to Children’s so families in Alabama won’t have to travel to get them.

“I’ve got four kids of my own,” he said. “I can’t imagine having a sick child who needs life-saving therapies and then having to separate from the rest of my family and go four or five states away.”

In addition to serving as director of the BMT program, Chewning is the medical director for patient safety.

September 5, 2022 by childrensal

Hematology and Oncology, Inside Pediatrics

Solid Tumor Program Features Many Experts With One Goal

_{^{Elizabeth Alva, MD, directs the solid tumor program at Children’s of Alabama and the University of Alabama at Birmingham.}}

The pediatric solid tumor program at Children’s of Alabama and the University of Alabama at Birmingham (UAB) is made up of experts from several specialties who work together to achieve one goal: provide the best care possible for patients with solid tumors.

“There are so many advances happening today in pediatric oncology,” Elizabeth Alva, MD, director of the program, said. “It’s helpful to create a niche in which you have a team that’s knowledgeable with good expertise in that area.”

The program is part of the Children’s hematology/oncology department. Alva is joined by fellow oncologists Jamie Aye, MD; Emily Johnston, MD; and Kimberly Whelan, MD. The team also includes advanced practice nurse practitioners and specialists from surgical oncology, orthopedic oncology, radiation oncology, palliative care and developmental therapeutics, as well as emotional support and psychosocial services.

One of the team’s objectives is to standardize care while still individualizing it. A key component of that is identifying the best clinical trials for their patients, something they do during their monthly “protocol” meetings. They also treat children with high-risk disease, such as neuroblastoma, with a comprehensive search of the literature to ensure everyone is up to date on the latest therapies and scientific findings, and then develop practice standards. “We’re making sure that we’re all focused on getting those patients the best care they can have,” Alva said.

The team also aims to increase participation in national consortiums of pediatric cancer centers to bring additional state-of-the-art care and innovative research to patients at Children’s. “Children’s and the University of Alabama at Birmingham are well recognized as a good center, but we want to continue to improve our national presence and our recognition as a top-notch program,” Alva said.

One area where that’s already happening is with the tumor xenograft project directed by Aye and pediatric surgeon Elizabeth A. Beierle, MD, in conjunction with others at UAB. Since the project’s inception in 2013, 175 patients have agreed to let the researchers implant their tumors into an animal model—a much more accurate way of studying these diseases. The goal is to better understand how the tumors behave and identify treatments that not only halt the cancer growth but have fewer side effects than current therapies.

September 5, 2022 by childrensal

Hematology and Oncology, Inside Pediatrics

Hope and Cope Program Helps Families Navigate Medical Journeys

With the diagnosis and treatment of childhood cancer or serious blood disorders like sickle cell disease comes an emotional rollercoaster for the child and the family. From practical issues including getting to appointments, caring for siblings, and managing the costs of care to psychosocial issues such as anxiety, fear, grief, and even anger, there are needs beyond the medical support physicians and nurses can provide. That’s where Children’s of Alabama’s Hope and Cope Psychosocial and Education Program comes in. The program provides emotional support and services using a family-centered approach in which the family and healthcare providers work together to best meet the needs of the entire family.

“It is becoming more and more important to provide these services to families dealing with cancer and serious blood disorders,” program director Avi Madan-Swain, PhD, said. “Even if we cure the disease medically, for some the cost of cure is high and results in neurocognitive difficulties as well as psychological difficulties, such as post-traumatic stress disorder.”

To reduce stress during hospitalizations or clinic visits, the Hope and Cope Psychosocial and Education Program offers inpatient schooling (either group or bedside); art, music, and animal-assisted therapy; parental consult service; a weekly inpatient caregiver dinner support group; and expressive activities such as drumming, drama, and journaling.

The program’s education/school liaisons help patients transition back to school, maintaining communication between the medical team, the child’s school, and the family and providing education to schools and families about special services the child may need. This includes classroom presentations to help classmates understand the child’s diagnosis and treatment.

Once a child is diagnosed with cancer or a serious blood disorder, families complete a screening questionnaire to help the team identify immediate needs. The team shares the results with the family and initiates evidence-based interventions to address identified needs. The overall goal is to prevent crises by intervening early rather than being reactive. The team then meets weekly to discuss the psychosocial needs of newly diagnosed patients and those who have relapsed and need close monitoring. They also talk about any difficulties the patient/family may be experiencing in the inpatient unit or outpatient clinic.

“We’re building wellness and resiliency,” Madan-Swain said. “We’re not just looking at family risk factors, but also their strengths, and developing plans to support young people and their families to manage the challenges of their medical journey, make the most of their strengths, and ultimately celebrate life.”

A new initiative is strengthening psychosocial service delivery for parents of children undergoing bone marrow transplant, Madan-Swain said. “I’ve been working to systematically standardize parent assessment and education and providing psychosocial resources because of the intensity of the process. It’s like being in a pressure cooker.”

One thing that sets Hope and Cope apart from similar initiatives at other children’s hospitals, according to Madan-Swain, is its bereavement component. Services begin when the disease is no longer treatable and continue for two years after a child’s death. All family members work with art and music therapists to create a “legacy piece,” such as a painting, sculpture, or music. For instance, the music therapist may record the child’s heartbeat and place it in a bear for the family. “We found that families who work on meaning-making activities cope much better after the loss of the child,“ Madan-Swain said. “This has really pushed us in the direction of making sure that we’re not waiting until the very end to create a legacy piece.”

Despite the success of the program, Madan-Swain is not resting. “I always want to move on to developing psychosocial care pathways based on family risk level and providing evidence-based interventions and expressive activities to improve adjustment and quality of life for both our oncology and hematology patients and their families,” she said.

September 2, 2022 by childrensal

Hematology and Oncology, Inside Pediatrics

Children’s Pediatric Oncologists Spearhead Registry of Children with Cancer, COVID

Left, Julie Wolfson, M.D., and right, Emily Johnston, M.D., are pediatric oncologists at Children’s of Alabama and assistant professors in the Division of Pediatric Hematology/Oncology in the University of Alabama at Birmingham Department of Pediatrics.

What started as a conversation among a Facebook group of pediatric oncologists at the pandemic’s start has now grown into the largest registry of children with cancer and COVID-19 in the country, providing invaluable information for healthcare providers grappling with the effects of the virus on their patients.

“People started posting in the Facebook group about caring for children with cancer and COVID-19, asking what they should do,” said Children’s of Alabama pediatric oncologist Emily Johnston, M.D., who, with her colleagues Julie Wolfson, M.D., and Jenn Levine, M.D., of Cornell Medical Center in New York, helped found the Pediatric COVID-19 Cancer Case (POCC) Report. “There were no data, no guidelines, nothing,” Dr. Johnston said. The registry, which is now housed at the University of Alabama at Birmingham, is led by Drs. Johnston and Wolfson.

The growth has been “miraculous,” Dr. Johnston said. “We started these conversations in March 2020 and had our first patients entered by the end of April, representing an incredible pace.” Today, the registry has data on more than 1,400 children from more than 100 sites. “The other hospitals are participating in the registry because it’s the right thing to do for our community and our patients,” she said. “The national collaboration has been really impressive.”

One goal of the registry is to provide real-time information to pediatric oncologists. The team sends regular data briefs to every pediatric cancer site in the country with updated summaries.

In December 2021, the group published its findings on 917 children from 94 U.S. hospitals in the prestigious Journal of Clinical Oncology. They found these children had a high risk of severe infection, with one-third admitted to the hospital and 9 percent to the ICU. They also found nearly half (45 percent) had their cancer therapy changed because of the infection. Fourteen (1.5 percent) died from COVID-19.

The children most likely to develop severe disease with COVID-19 infections were age 11 or older; those with health conditions in addition to their cancer; and those with neutropenia (low white blood cell count) or hematologic cancers. Hispanic children were most likely to be infected and to have their cancer therapy modified, even though they didn’t have more severe illness. This, Dr. Johnston said, mirrors the racial and ethnic disparities seen in the wider population with COVID-19.

She and her colleagues are working on understanding why Hispanic children were more likely to have their treatment changed. “This may reflect a combination of systemic issues, biological issues, and even our innate biases. It’s probably a combination of all these, and definitely something we need to tease apart to figure out why this is happening.”

Dr. Johnston and her team are now collecting data on the vaccination status of all patients, including those in the registry, and the impact of vaccination on infection. They also have a small grant to delve deeper into the data, including to assess how COVID-19 in children with cancer has changed over the course of the pandemic and determine the impact of the virus on long-term health.

An important area they hope to research focuses on the impact of treatment changes. “We’ve had such incredible improvements in survival in the last several decades in part because we’ve gotten more treatments and escalated treatment, including giving more intense, frequent chemotherapy,” Dr. Johnston said. “That’s led to improved survival. We get very nervous when we have to hold or modify chemotherapy.”

The two Drs. Johnston and Wolfson said they feel a calling for the work. “We felt it was our duty to use our research infrastructure for this public health purpose,” said Dr. Wolfson. “Hopefully, we’ll be able to help patients and clinicians as much as possible.”

February 15, 2022 by childrensal

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