Perspectives on Virtual Care for Childhood Cancer Survivors in Non-Metropolitan Areas during the COVID-19 Pandemic.

The COVID-19 pandemic paved the way for the widespread use of virtual care for childhood cancer survivors (CCSs). CCSs were virtual recipients of diverse care, including long-term follow-up (LTFU), primary care, mental health care, and several others. Virtual care comes with well-documented benefits and challenges. These are further magnified for CCSs living in rural or non-metropolitan areas. Here, we describe the virtual care of CCSs from two Upper Midwest cities with well-established childhood cancer survivor programs within large comprehensive cancer centers in the United States. CCSs from non-metropolitan areas, especially CCSs with two or more late effects, used virtual care more often during the COVID-19 pandemic compared to CCSs from metropolitan areas. A review of the related literature is also included and the identified challenges in providing virtual care, such as privacy concerns, technology-connectivity constraints, and medical license restrictions. Despite these limitations, the care of CCSs has evolved to leverage virtual care and its ability to increase access for patients and promote continuity of care for CCSs living in rural areas.

Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers.

BACKGROUND: Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. PROCEDURE: Bridge to Next Steps is a two-visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1-23 years) and 46 caregivers participated. Participants completed pre- and post-intervention measures: Distress Thermometer and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post-intervention acceptability survey. RESULTS: Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers' distress and anxiety scores decreased from pre to post intervention (p < .01). Survivors' scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, <.01, respectively). CONCLUSIONS: Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.

Dexmedetomidine for sedation during hematopoietic stem cell harvest apheresis and leukapheresis in the PICU: Guideline development.

BACKGROUND: Hematopoietic stem cell (HSC) harvest apheresis and leukapheresis are performed in the pediatric intensive care unit (PICU) for high-risk pediatric patients who require procedural sedation. Patients need central access either with their own central lines, ports or require apheresis catheter (CVL) placement. Previously, patients were either awake or emerging from sedation on PICU admission. Uncertainty regarding procedural sedation plans caused delays initiating sedation and apheresis. A guideline was developed to standardize Dexmedetomidine (DEX) for procedural sedation. We investigated if guideline implementation would improve efficiency during PICU admission as demonstrated by shorter time intervals for initiation of sedation, apheresis, PICU length of stay and less alternative sedating medication. METHODS: Data was collected retrospectively from electronic health records of preguideline and post-guideline patients who were admitted to the PICU for sedated apheresis. We compared demographic and clinical characteristics, time intervals for sedation, apheresis, PICU length of stay, and sedation agents between the two groups using Fisher Exact tests and Mann-Whitney tests, as appropriate. RESULTS: The groups did not differ in age or weight at the time of apheresis. All intervals of time compared were shorter post-guideline. Time intervals from admission to start of sedation, admission to start of apheresis, and admission to end of apheresis were statistically significantly different. The type and number of alternative sedating medications administered did not differ between the two groups. CONCLUSION: This guideline implementation improved efficiency during PICU admission. This study might have been too small to demonstrate statistically significant differences in other time intervals studied.

Evaluation of fatigue and related factors in survivors of pediatric cancer and hematopoietic stem cell transplant.

This study sought to better understand specific factors contributing to fatigue in survivors of pediatric cancer and hematopoietic stem cell transplant (HSCT). As part of a larger study evaluating long-term psychosocial functioning of pediatric cancer survivors, N = 87 participants completed measures assessing fatigue and emotional and behavioral functioning. Chart abstraction was used to catalog diagnosis, treatments received, treatment intensity, and late effects. Results suggest clinically significant fatigue in n = 4 (4.6%) of survivors participating in this study. Fatigue was greater for participants with more recent diagnoses and who were more recently off treatment and was positively associated with parent and self-report of internalizing (emotional) and externalizing (behavioral) symptoms. Participants with more severe late effects suffered greater fatigue; however, fatigue was not associated with treatment intensity or therapy type. Fatigue is an important variable to consider in evaluating the social, emotional, behavioral, and physical well-being of cancer and HSCT survivors. Interventions are needed to address fatigue directly, while also addressing both contributing factors to fatigue and potential negative outcomes that result from fatigue in survivorship.

Case Series: Development of Polyps as a Late Effect After Total Body Irradiation-based Hematopoietic Cell Transplantation in Children With High-risk Leukemia.

Advancements in hematopoietic cell transplantation (HCT) have led to increased survivorship rates in many childhood diseases. However, this growing group of long-term survivors face a myriad of late effects. There are currently limited guidelines for surveillance of gastrointestinal polyps for pediatric transplant patients. Here we describe 5 patients undergoing HCT with total body irradiation-based conditioning regimens for leukemia who developed symptomatic polyps a median of 4.5 (range: 0.75 to 5.75) years after HCT. Because of limited surveillance guidelines in children, we conclude that the development of new or progressive symptoms related to the gastrointestinal tract deserves prompt recognition and evaluation.

Developmental differences in health-related quality of life in adolescent and young adult cancer survivors.

PURPOSE: Adolescents and young adults (AYAs) experience developmental transitions. AYA survivors of cancer are at risk for chronic health conditions due to treatment. This study examined developmental differences in AYA survivors' health-related quality of life (HRQOL) between age groups and compared to population norms. METHODS: HRQOL was assessed in AYA survivors of cancer (diagnosed before age 30) in long-term follow-up. Cancer survivors who were 12-39 years old at survey completion and completed therapy ≥ 2 years ago were included. HRQOL was assessed using the PedsQL™ and FACT. RESULTS: Sample size was 155 survivors. PedsQL™ school functioning was worse in 15-17 year olds compared to 12-14 year olds (66.35 vs 77.60, p = 0.012). Compared to population norms, PedsQL™ outcomes were only worse in survivors' school functioning. Survivors' 18-39 years old had FACT scores that were better than population norms for overall HRQOL (91.33 vs 80.1, p < 0.001), and in physical (24.22 vs 22.7, p < 0.001), social (23.46 vs 19.1, p < 0.001), and functional well-being (22.94 vs 18.5, p < 0.001). Regression analysis identified that survivors who were < 15 years old and had not relapsed, and survivors who were 15-18 years old and had ≥ 2 late effects are at highest risk of lower HRQOL. For older survivors the highest risk group for lower HRQOL were < 21 years old at survey completion, > 7 years old at diagnosis and > 6 years post therapy. CONCLUSION: A trend in school functioning issues in older adolescent survivors emerged. Older survivors show improved HRQOL when compared to the general population. Those further off therapy are at risk of poor HRQOL.

Sequential transplantation and implications for clinical management: OLT followed by HCT and consequent RT in a pediatric patient.

We report a case of a pediatric patient who required three separate transplants: OLT at the age 5, HCT at age 13 (8 years post-OLT), and cadaveric RT at age 15 (10 years post-OLT). The child initially presented with fulminant liver failure without known cause, ultimately undergoing OLT from his mother. He then developed SAA, for which he required HCT. Unfortunately, he developed ESRD secondary to prolonged CNI exposure, for which he underwent cadaveric RT. These processes then resulted in 7 years largely free from complications, during which a multi-disciplinary team monitored the patient for complications. Regrettably, at the age of 21 he developed poorly differentiated mucinous adenocarcinoma of the colon which ultimately led to his demise. While there are case reports of patients requiring two sequential transplants, there is a paucity of reports of successfully completing three separate organ transplants in the same patient. Our case demonstrates progression of a pediatric patient through OLT, HCT, and RT with discussion of notable clinical implications. Secondarily, this case highlights the importance of coordination of care amongst various subspecialties to facilitate tandem transplantations and manage the complications of these processes. As pediatric patients have improved survival rates and may require multiple transplants, it remains important to highlight the feasibility as well as the complications of the tandem transplant process.

Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families.

BACKGROUND/OBJECTIVES: The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment. DESIGN/METHODS: Forty-nine caregiver-child dyads completed semi-structured interviews and surveys 1-2 months before ending treatment, and again 3-7 months after treatment concluded. RESULTS: Patients and caregivers reported a moderate level of understanding of follow-up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow-up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group. CONCLUSIONS: There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.

Late Effects Surveillance Recommendations among Survivors of Childhood Hematopoietic Cell Transplantation: A Children's Oncology Group Report.

Hematopoietic cell transplantation (HCT) is an important curative treatment for children with high-risk hematologic malignancies, solid tumors, and, increasingly, nonmalignant diseases. Given improvements in care, there are a growing number of long-term survivors of pediatric HCT. Compared with childhood cancer survivors who did not undergo transplantation, HCT survivors have a substantially increased burden of serious chronic conditions and impairments involving virtually every organ system and overall quality of life. This likely reflects the joint contributions of pretransplantation treatment exposures and organ dysfunction, the transplantation conditioning regimen, and any post-transplantation graft-versus-host disease (GVHD). In response, the Children's Oncology Group (COG) has created long-term follow-up guidelines (www.survivorshipguidelines.org) for survivors of childhood, adolescent, and young adult cancer, including those who were treated with HCT. Guideline task forces, consisting of HCT specialists, other pediatric oncologists, radiation oncologists, organ-specific subspecialists, nurses, social workers, other health care professionals, and patient advocates systematically reviewed the literature with regards to late effects after childhood cancer and HCT since 2002, with the most recent review completed in 2013. For the most recent review cycle, over 800 articles from the medical literature relevant to childhood cancer and HCT survivorship were reviewed, including 586 original research articles. Provided herein is an organ system-based overview that emphasizes the most relevant COG recommendations (with accompanying evidence grade) for the long-term follow-up care of childhood HCT survivors (regardless of current age) based on a rigorous review of the available evidence. These recommendations cover both autologous and allogeneic HCT survivors, those who underwent transplantation for nonmalignant diseases, and those with a history of chronic GVHD.

A multimethod assessment of psychosocial functioning and late effects in survivors of childhood cancer and hematopoietic cell transplant.

Previous research in childhood cancer and hematopoietic cell transplant (HCT) survivorship has relied on the use of standardized questionnaires that assess symptoms of psychological functioning but do not sufficiently capture the cancer survivorship experience. Study aims are to quantitatively and qualitatively assess the psychosocial functioning of pediatric cancer and HCT survivors seen in a multidisciplinary survivorship clinic, determine survivorship concerns, and assess potential demographic and medical correlates of psychosocial outcomes. Data were collected using a retrospective chart review of a parent-report questionnaire of the child's psychological functioning, responses to a semistructured interview that qualitatively assessed adjustment to life after treatment, and documented medical late effects. Results indicated the majority of survivors had healthy psychological adjustment based upon a parent-report questionnaire. However, nearly 72% of survivors reported 1 or more survivorship concerns during the interview, with the primary concerns being current and future health or physical functioning, including the possibility of cancer recurrence. A content analysis of the interview responses indicated HCT survivors had more school or cognitive functioning concerns compared with survivors who did not have an HCT. Further research should use survivorship-specific measures to better identify survivors at risk and determine the impact of late effects on their quality of life.

Late effects in adult survivors of childhood cancer: considerations for the general practitioner.

Childhood cancer survivorship is a national public health priority, with an increasing number of survivors who face late effects from both disease and treatment. As childhood cancer survivors are living into adulthood, care of the late effects associated with their diagnosis and treatment can become complex. Often these patients no longer have follow-up with the treating pediatric hospital and seek medical care from an adult primary care professional. Combining the results of current survivorship research with clinical experience, we describe common late effects that general internists and primary care professionals may encounter during routine visits with adult survivors of childhood cancer. Recommendations and resources are provided for identifying and managing late effects.

Growth velocity in pediatric bone marrow transplantation: significance of donor type and treatment factors.

Children who have undergone bone marrow transplantation (BMT) often have decreased growth. Growth is a multifactorial process, and the factors that influence growth after BMT are not completely understood. The authors hypothesized that donor type may be a factor influencing growth. Sixty-five children and adolescents who underwent BMT (32 related matched, 33 unrelated matched) were evaluated. Growth velocity (height standard deviation) was assessed prior to and 2 years following BMT. The results indicated that children and adolescents who underwent unrelated matched transplants had lower growth velocity (P < .059) than those with related matched transplants. Those who received the standard conditioning regimen that included total body irradiation (TBI) had a significantly lower growth velocity (P < .045) than those with chemotherapy-only regimens. Significant correlates of growth velocity included younger age at BMT and pre-BMT growth velocity. Thus, donor type, age at BMT, prior treatment, and BMT conditioning regimens that include TBI may all affect growth post-BMT. Careful monitoring of growth velocity is required for patients who have received an unrelated donor BMT.