Pediatric oncology is justifiably proud of its long tradition of multi-institutional collaboration in clinical research. Perhaps no other field of medicine has more effectively shown what can be achieved by pooling talent and resources to study challenging diseases. Historically, most collaborative projects were limited to a single country or continent. However, more progress comes from even broader international cooperation. With rare cancers, this may be the only way to gather sufficient patient numbers to address key questions. Sharing national experiences can also lead to a deeper understanding of the advantages and risks associated with different therapeutic approaches. The first steps to increased global cooperation, however, is agreeing on a common language to describe patient cohorts and consensus standards to guide diagnosis, evaluation, and treatment. Applying these lofting goals to pediatric soft tissue sarcomas, the INternational Soft Tissue SaRcoma ConsorTium (INSTRuCT) was born.From its initial formative meeting in May 2017, INSTRuCT has patterned its structure and purpose on the successful model of the International Neuroblastoma Risk Group (INRG).1,2 The membership of INSTRuCT is composed of three large cooperative clinical trials organizations: Children’s Oncology Group (COG), Cooperative Weichteilsarkom Studiengruppe (CWS), and European paediatric Soft tissue sarcoma Study Group (EpSSG). The first goal for INSTRuCT is to develop an international risk stratification system for rhabdomyosarcoma (RMS) to replace competing systems used in Europe and North America. A common RMS risk stratification system would facilitate the comparison of clinical trial results across cooperative groups. Before generating a RMS risk stratification system, INSTRuCT agreed upon a standard RMS data dictionary, leveraging the University of Chicago’s Pediatric Cancer Data Commons expertise in data standardization.3 The compilation of COG, CWS, and EpSSG data (and data from their legacy groups) from finished studies into a single INSTRuCT dataset is nearly complete, and will include more than 7000 patients enrolled on previous RMS clinical trials. Once the RMS risk stratification project is finished, INSTRuCT will mine its dataset for answers to questions that can only be addressed with large, well-annotated clinical data. Future work will also include expanding the RMS data dictionary and adding a non-RMS soft tissue sarcoma dataset, also drawn from COG, CWS, and EpSSG clinical trials.As the multi-disciplinary members of INSTRuCT were defining their RMS data dictionary, they realized they had the opportunity to develop international consensus statements on the diagnosis, evaluation, and management of pediatric soft tissue sarcomas. Clinical trial protocols include guidelines for pathologic diagnosis, imaging staging evaluation, and local control approaches with surgery and radiation therapy varied by primary anatomic site. INSTRuCT provided the forum for international discussion and consensus building, with the goal of publishing these expert opinions for broad dissemination and use by pediatric oncologists, surgeons, radiation oncologists, radiologists, and pathologists worldwide. In this issue of Pediatric Blood & Cancer, Morris et al. publish the one of first in a series of consensus statements from INSTRuCT, focusing on the surgical management in the diagnosis and local control of RMS arising in the extremity.4 Morris et al. outline recommended biopsy approaches, the rational for routine use of regional lymph node evaluation including the role of fluorodeoxyglucose positron emission tomography, and the decision-making behind up-front versus delayed primary excision. The recommendations are guided by the principles of maximizing oncologic outcome while maintaining extremity function. Given the rarity of extremity RMS and the absence of randomized trials comparing different management strategies, Morris et al. draw upon a combination of clinical data and expert opinion in their consensus guidelines, carefully documenting the level of evidence that supports each of their recommendations. Nonetheless, these guidelines represent the current state of the art for surgical management of extremity RMS and the basis for future clinical trial recommendations. A similar consensus statement on RMS of the female genital tract has also been published in Pediatric Blood & Cancer, by Lautz et al.5 With these two consensus statements, the INSTRuCTPediatric Blood & Cancer special series is off to an excellent start, with manuscripts on the surgical management for other primary sites and the pathologic evaluation of RMS to follow soon. As INSTRuCT co-chairs, we are pleased to introduce INSTRuCT to the global pediatric oncology community and look forward to many more contributions to come.
Ketamine is a dissociative anesthetic agent, with excellent analgesic properties and a favorable safety profile. Although it acts predominantly through NMDA receptor antagonism, numerous other molecular targets have been characterized, rendering anti-inflammatory, anti-depressant, and thus expanding its scope for new clinical applications. The noticeable safety of ketamine in children enables its widespread use in pediatric oncology, chiefly for procedural sedation. Its value for chronic pain management in children with cancer is being increasingly recognized but requires more evidence. The topical use of ketamine is largely in investigational stages.. Rational medical use of ketamine is largely free from significant long-term neurological side effects but may have some troublesome short-term effects such as vomiting, palpitations, urinary retention, and hallucinations. This review will provide a brief account of the pharmacology of ketamine and primarily focus on the relevant aspects of ketamine in pediatric oncology.
BACKGROUND Despite improvements in overall survival for pediatric cancers, treatment disparities remain for racial/ethnic minorities compared to non-Hispanic white; however, the impact of race on treatment outcomes for pediatric brain and central nervous system (CNS) tumors in the United States is not well known. METHODS We included 8713 children aged 0 – 19 years with newly diagnosed primary brain and CNS tumors between 2000 – 2015 from the Census Tract-level SES and Rurality Database developed by Surveillance, Epidemiology and End Results Program. We used Chi-square tests to assess differences in sociodemographic, cancer, and treatment characteristics by race/ethnicity and Kaplan–Meier curves and Cox proportional hazards models to examine differences in 10-year survival, adjusting for these characteristics. RESULTS Among 8,713 patients, 56.75% were non-Hispanic white, 9.59% non-Hispanic black, 25.46% Hispanic, and 8.19% from “other” racial/ethnic groups. Median unadjusted survival for all pediatric brain tumors was 53 months but varied significantly by race/ethnicity with a median survival of 62 months for Non-Hispanic whites, 41 months for Non-Hispanic blacks, and 40 months for Hispanic and Other. Multivariable analyses demonstrated minority racial groups still had significantly higher hazard of death than non-Hispanic whites; Hispanic [aHR 1.25 (1.18 - 1.31)]; non-Hispanic black [aHR 1.12(1.04 - 1.21)]; Other [aHR 1.22(1.12 - 1.32)]. Results were consistent when stratified by tumor histology. CONCLUSION We identified disparities in survival among racial/ethnic minorities with pediatric brain and CNS tumors, with Hispanic patients having the highest risk of mortality. Eliminating these disparities requires commitment towards promoting heath equity and personalized cancer treatment.
Background. Adolescents/young adults (AYAs) with acute lymphoblastic leukemia (ALL) are more likely to have chemotherapy-related complications than children. In addition, several reports have shown that infections account for most of the therapy-related mortality during cancer treatment in AYAs. Thus, we hypothesized that chemotherapy-induced myelosuppression is more severe in AYAs than in children, and the state of neutropenia was compared between children and AYAs using the D-index, a numerical value calculated from the duration and depth of neutropenia. Procedure. This study retrospectively analyzed 95 patients newly diagnosed with ALL at our institution between 2007 and 2019. Of these, 81 were children (< 15 years old) and 14 were AYAs (≥ 15 years old). The D-index and duration of neutropenia during induction chemotherapy for ALL were compared between children and AYAs. Results. The median D-index of children was significantly higher than that of AYAs (8,187 vs. 6,446, respectively, P = 0.017). Moreover, the median duration of neutropenia was also significantly longer in children than in AYAs (24.0 days vs. 11.5 days, respectively, P = 0.007). Conclusion. Contrary to our expectations, myelosuppressive toxicity during induction chemotherapy for ALL was more severe in children than in AYAs.
Langerhans Cell Histiocytosis (LCH) is characterized by activating variants of the MAPK pathway. Inhibition of the MAPK pathway with trametinib (MEK inhibitor) has been shown to induce responses in LCH patients. Two adolescent males with LCH driven by BRAF p.N486_P490del have received trametinib for >1 year with no reactivation in one and partial response in another (including stable lung disease). A third male with neonatal LCH and MAP2K1 p.K57_G61del had a complete response to trametinib with no active disease after 22 months. All patients continue on trametinib monotherapy with tolerable skin and CPK toxicity.
Background: The prognosis of children with acute myeloid leukemia (AML) has improved with the efficacy of hematopoietic cell transplantation as a second-line therapy and improvements in supportive care following anthracycline- and cytarabine-based chemotherapy; however, the outcomes of children with relapsed AML still remain unsatisfactory. Procedure: In order to identify prognostic factors and improve their prognosis, we analyzed 111 patients who relapsed after treatment with the Japanese Pediatric Leukemia/Lymphoma Study Group (JPLSG) AML-05 protocol and who were registered in the retrospective JPLSG AML-05R study. Results: The 5-year overall survival rate was 36.1%. The major determinant of survival was duration from the diagnosis to relapse. The mean duration in the non-surviving group (10.1 ± 4.1 months) was shorter than that in the surviving group (16.3 ± 8.3 months) (p<0.01). Moreover, achieving a second complete remission (CR2) prior to hematopoietic cell transplantation was associated with a good prognosis (p<0.01). Etoposide, cytarabine and mitoxantrone (ECM)- or fludarabine, cytarabine and granulocyte colony-stimulating factor (FLAG)-based regimens were therefore recommended for reinduction therapy (p<0.01). A genetic analysis also revealed the prognostic significance of FMS-like tyrosine kinase 3 (FLT3)-internal tandem duplication as a poor prognostic marker (p=0.04) and core binding factor-AML, t(8;21) and inv(16), as good prognostic markers (p<0.01). Conclusions: Achieving a CR2 prior to HCT is important in order to improve the prognosis of relapsed pediatric AML. Recent molecular targeted therapies, such as FLT3 inhibitors, may contribute to overcome their prognoses. Larger prospective investigations are necessary to establish individualized treatment strategies for patients with relapsed childhood AML.
Cytotoxic agents are the major part of current therapeutic arsenal in pediatric oncology. Recently, small molecules have been combined in the standard regimen for targeted cancer therapy. Both drugs provoke adverse effects on the living cells via the specific and non-specific actions to neoplastic cells. Considering genetic and epigenetic events, the late effect rather than acute toxicity is a matter of concern for healthy subjects at risk of exposure to anticancer drugs. To reduce the risk, a list of hazardous drugs (HDs) has been updated by the National Institute for Occupational Safety and Health (NIOSH) including commonly used cytotoxic agents. HDs are defined by their association with genotoxicity, carcinogenicity, teratogenicity, impaired fertility, reproductive toxicity, and/or serious organ toxicity even at a lower dose.1 The American Society of Clinical Oncology (ASCO) standard promotes the safety of professional staff of pharmacists, physicians, nurses, and other collaborators in oncology care.2 It recommends the preventive measures to avoid the toxic products, incorporating the latest evidence of the deleterious late effects after exposure, and the benefits of control measures, along with expert consensus. United States Pharmacopeia Chapter <800> requires an appropriate list of HDs in healthcare settings, providing concrete information regarding the articles of personal protective equipment, as well as where and how they should be donned, used, and removed is prescribed.3Several guidelines for the occupational exposure to HDs have been established for the health of hospital workers,1-5 but not the family members of childhood cancer. We thus investigated the exposure of caregiver and medical staff to anticancer drugs and the environmental contamination. Fifteen inpatients with pediatric cancer were recruited who received high-dose cyclophosphamide (CPM) from 2017 to 2018. Seven infants and 8 adolescents had 4 leukemias and 11 solid tumors. The median age at the time of this study was 78 months ranging from 13 to 200 months. The infants and adolescents received CPM of 1g /m2 or more; median 640 (range 620~1300) mg, and 1230 (range 780~1230) mg, respectively. Six hours after the first administration, the concentration of CPM was measured in the urine and saliva from attending mothers, nurses, doctors, nursery teachers, child-life specialists, and housekeeping staff members in the ward, using the liquid chromatography/mass spectrometry method (Shionogi Analysis Centre Co., Ltd., Osaka, Japan)6. Safe handling and closed-system-drug-transfer devices (JMS Co. Ltd., Hiroshima, Japan) are the standard of our center to minimize the technical exposure.7 This study was approved by the institutional review board of Kyushu University. Five of 7 (71%) infant’s and 2 of 8 (25%) adolescent’s mothers showed increased urine levels of CPM. The median value of infant’s mothers (192 ng/10 mL, range 0~1,510) was significantly higher than that of adolescent’s mothers (0 ng/10 mL, 0~58.4) (p =0.005). CPM was detected in the saliva samples of two mothers caring infants, but not in the urine or saliva of any medical staff (Figure ). The environmental contamination in a room of the infant whose mother showed the highest concentrations was assessed by the modified method.6 High levels of CPM were determined in the monitoring samples from a 17-year-old boy; toilet floor (1020 times of the detection limit), toilet seat (167 times), wash basin (45.6 times), a 13-year-boy; underwear (735 times) bed sheets (224 times), bed fence (34.8 times), bedside floor (20.9 times), exhaust vent (13.1 times), bedside table (7.4 times), door knob (4.9 times), curtain (4.7 times), and a 2-year-boy; bathing hot water (205 times) at 24 hours after the first administration, respectively. No staff having detectable CPM levels represented the control of HDs exposure in our hospital. In contrast, the exposure was frequently found in attending mothers caring infants. The higher levels of CPM in infants’ mothers than in adolescents’ mothers are explained by the closer contact for care. The environmental contamination has occurred from the body fluid of patients but not the drug delivery.The latest systems and guidelines have effectively controlled the accidental exposures of drugs to medical staff, as shown in the present results, throughout the process from the formulation in the pharmacy department, transportation, and administration to bed-side patients. The mother’s exposure is categorized as an intermediate risk. It may occur in case of high-dose therapy with limited duration. However, the metabolites of CPM including 4-hydroxycyclophosphamide show cytotoxicity.9 The mixture of selected cytostatic drugs has an augmented cytotoxicity leading to the late effects on genome even at low concentrations.10 During the long-term intense chemotherapy for pediatric cancer, the preliminary results may raise the need for preventive measures for caregivers according to the equivalent levels to medical staffs.
Obituary PBC Dr Pat Morris JonesDr Morris Jones who was President of SIOP in 1980/81 died on March 16 2020 at the age of 87. She was one of the first doctors in the UK to specialise in the care of children with cancer and over her 40 year career from 1953 to 1993 she saw survival rates improve from cancer being mainly a fatal disease to one where there was a real chance of cure with more than half of children surviving. She was an only child ,born in Oswestry ,close to the border with Wales. She trained in medicine at the Royal Free Medical School in London and found her way to Manchester to specialise in paediatrics. There she came under the influence of Basil Marsden, a paediatric pathologist and Dr Dorothy Pearson a radiotherapist. In 1954 Marsden had established the world’s first population based children’s malignant disease registry which became a prototype for registries all over the world. Dr Pearson was a founding member of SIOP and its second president. In the late 50s and early 60s the only real treatments available were surgery and radiotherapy but the emerging success of chemotherapy pioneered in the US, France and Germany led to a need for paediatricians to sub specialise in paediatric oncology. By the time Pat became involved the antagonism towards giving children chemotherapy had largely dissipated but how to use it to best advantage remained to be determined. She took up this challenge and built up one of the largest units in the UK. For many years she was single handed and absolutely dedicated to the care of children. She rarely took a day off. . Before people were talking about evidence based medicine she was adamant that treatment should be given in trials where we could learn what was best for the future. She was especially interested in Wilms’ tumour and very involved in the Medical Research Council embryonal tumour group and in the MRC UKALL trials. In 1977 she helped found the UK Children’s Cancer Study Group (UKCCSG) which eventually ensured that all children in the UK with cancer had access to the most up to date treatment. The early involvement of Manchester in the pre chemotherapy era using radiotherapy, and the registry, led her to take a real interest in the late effects of treatment. She had a collection of slides which she used to illustrate the late effects of radiotherapy when given to young children. Failure of skeletal growth could ensue from radiotherapy to growing bones and second malignancies occurred within radiation fields. She became heavily involved with Anna Meadows in Philadelphia in setting up the Late Effects Study Group which received substantial funding from NIH. This work was extended and has been perpetuated by Les Robison and his colleagues and has hugely influenced the design of clinical treatment protocols in recent years. She wrote an influential paper in 1990 entitled Childhood Cancer; Cure at what cost? In which she described the evolution of treatment for childhood cancer from one of cure at any cost to cure at least cost. Her fervent hope was that we would eventually get to a stage of cure at no cost. Pat was an inspirational teacher and leader and many of the young aspiring paediatric oncologists in the 70s turned to her for career advice and then once appointed to a post used her as a source of support and advice on patient management. She was most people’s “phone a friend”.The psychosocial problems faced by both children and parents became much more obvious once potentially curative treatments were being used. Paradoxically parents seemed to be able to cope better with the near certainty of death of their child than with the possibility, but by no means certainty, of long term survival. She worked closely with Peter McGuire, a psychiatrist, and with social workers to define the problems faced by children and their families and devised interventions to try and help. It was clear from the early leukaemia trials, which involved cranial irradiation and brain tumours that endocrine insufficiency was a real problem and she worked closely with Professor Steve Shalet, a paediatric endocrinologist, to not only define what these problems were but also how to follow up and screen survivors. She was always much in demand for conferences once causing consternation in Bruges when, invited to take a shot at the men only archery club she hit the bull’s eye first time. The local tradition was that anyone who did this was invited to become a member.Her retirement at the age of 60 was marked by an enormous party in Manchester Town Hall attended by many of the patients whom she had successfully treated and the parents of many of those who had died. She remembered all of their names. She was short in stature but big in personality, loved clothes and is remembered for her leather skirts and red shoes. In later years her hair was often a shade of blue and always well coiffeured . She was always a straight talker and had lots to say in meetings. She was direct and always had strong opinions. She was once quoted in a national newspaper that money was being wasted on sending children to Disneyland.Throughout her career she loved foreign travel which was often associated with scientific meetings. She built up a wide circle of friends including Anna Meadows, Dan D’Angio, Mark Nesbit and Audrey Evans whom she would call upon to offer training places to her aspiring young colleaguesWhen she retired from clinical work in 1993 she decided to move to London. “As a single lady why would I want to move into a country cottage? Soon after her move to central London she met and married her Italian hairdresser, Alfonso Cassarini, and enjoyed 20 blissful years travelling widely and exploring the capital’s culture.Pat Morris Jones was a forceful and formidable pioneer who always had the best interests of children and their families at the forefront of everything that she did. The incredible survival rates for children with cancer in the present era using treatments which are designed to minimise late effects are built on the shoulders of giants like her who dared to try.Alan CraftTim Eden
The coagulopathy of the novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is well documented in adults, with increases in D-dimer and prothrombin time strong predictors of mortality and anticoagulation shown to decrease this mortality. Viscoelastic parameters such as elevations in maximum clot firmness (MCF) on rotational thromboelastometry (ROTEM) have correlated with a hypercoagulable state in adults with SARS-CoV-2. We report our experience in children infected with SARS-CoV-2, with noted elevations in D-dimer and MCF on ROTEM (indicating hypercoagulability). Exploration of viscoelastic testing to provide additional laboratory-based evidence for pediatric-specific risk-assessment for thromboprophylaxis in SARS-CoV-2 is warranted.
As we celebrate 2020 as the Year of the Nurse and the Midwife and recognize the Global Initiative for Childhood Cancer, members of the International Society of Pediatric Oncology (SIOP) Baseline Nursing Standards Taskforce would like to highlight advocacy efforts promoting the baseline nursing standards.1, 2 Your published article, An ethical imperative: safety and specialization as nursing priorities of WHO Global Initiative for Childhood Cancer(Pergert and colleagues) reveals the importance of ongoing efforts to support implementation of the Baseline Nursing Standards.3 Given that the majority of hospitals are not meeting the standards in low- and middle-income countries (LMIC), as well as some high-income countries (HIC),4, 5 advocacy initiatives are required to raise awareness of the need to meet these standards. During the COVID-19 pandemic, health facilities face new challenges in meeting the standards. To achieve the WHO global initiative’s goal to save one million children’s lives by 2030, it is important to continue efforts to address baseline nursing standards.Pediatric oncology as a subspecialty requires a nursing workforce with specialized education and clinical skills to achieve optimal patient outcomes. Knowledge itself is not enough if nurses lack the resources and support to practice or implement appropriate nursing care in their work settings. The six Baseline Nursing Standards focus on key elements essential to delivering quality and safe care (Table 1). Collectively, they serve as a framework and foundation for positive pediatric oncology nursing practice environments internationally.Advocacy efforts to disseminate the baseline standards are well established. To date, fourteen organizations have endorsed the Standards. Members of the SIOP PODC Nursing Working Group hosted a “Leadership and Advocacy Workshop: Disseminating the Baseline Nursing Standards” prior to the SIOP Conference in October 2017. Twenty-two pediatric hematology/oncology nurse leaders and four stakeholder-group representatives (parent, physicians, advocates) from 14 countries met and established goals and strategic priorities for advocacy of the standards. As a result, the Baseline Nursing Standards Advocacy Toolkit was developed and can be found on the SIOP Nursing Website https://siop-online.org/baseline-nursing-standards-advocacy-toolkit. The toolkit contains practical advocacy resources, including a PowerPoint presentation, an endorsement letter template, publications, podcasts, a social media campaign and examples of elevator speeches for each standard. Furthermore, the Standards have been featured in international presentations, such as a keynote presentation (S. Day) in SIOP Lyon, an award session and nursing abstract presentations at SIOP congresses and continental meetings.To reach the WHO target of doubling the global childhood cancer survival rate to 60%, achievement of baseline nursing standards for pediatric oncology must be prioritized and appropriately resourced by hospital administrators, governments and other stakeholders. Amid a global pandemic where nursing resources are stretched, creative ways to support and advocate for implementation of the standards is needed. In recognition of the recent publication by the Nurse Specialists of the Global Initiative for Childhood Cancer noting the baseline standards, now is the time to act and improve childhood and adolescent cancer outcomes through raising the standard of pediatric oncology nursing practice around the world.Linda Abramovitz, Rehana Punjwani, Glenn M. Afungchwi and Courtney Sullivan and the SIOP PODC Baseline Standards Nursing Task Force.A special thank you to Rachel Hollis for her commitment and ongoing advocacy efforts focused on the baseline nursing standards.ReferencesDay S, Hollis R, Challinor J, Bevilacqua G, Bosomprah E, SIOP PODC Nursing Working Group. Baseline standards for paediatric oncology nursing care in low to middle income countries: position statement of the SIOP PODC Nursing Working Group. Lancet Oncol. 2014; 15(7):681-682 PMID: 24872097.Day S, Challinor J, Hollis R, Abramovitz L, Hanaratri Y, Punjwani R. Paediatric Oncology nursing care in low-and middle-income countries: a need for baseline standards. Cancer Control. 2015;2015:111-116Pergert P, Sullivan CE, Adde M, et al. An ethical imperative: Safety and specialization as nursing priorities of WHO Global Initiative for Childhood Cancer. Pediatr Blood Cancer. 2019;e28143. https://doi.org/ 10.1002/pbc.28143Morrissey L, Lurvey M, Sullivan C, et al. Disparities in the delivery of pediatric oncology nursing care by country income classification: international survey results. Pediatr Blood Cancer. 2019;66(6):e27663.Sullivan CE, Morrissey L, Day SW, Chen Y, Shirey M, Landier W. Predictors of Hospitals’ Nonachievement of Baseline Nursing Standards for Pediatric Oncology. Cancer Nurs. 2019 Mar 29;
As the effects of cancer and its treatment have long-lasting negative impacts on the health and quality of life of survivors, there is a need to explore new avenues to optimize long-term patient outcomes in pediatric oncology. Therefore, this scoping review aims to report on the state of the evidence on the use and effects of behavioural interventions targeting physical activity and diet behaviours in pediatric oncology. Fourteen quantitative studies were included. Studies evaluated a combination of two or three different modalities, including education (n=11), physical activity (n=6), psychosocial support or training (n=6), reward system (n=2) and adventure-based activities (n=1). Overall, behavioural interventions in pediatric oncology appear beneficial; however, no conclusive evidence favouring specific interventions were identified.
There are no proven safe and effective therapies for children who develop life-threatening complications of SARS-CoV-2. Convalescent plasma (CP) has demonstrated potential benefit in adults with SARS-CoV-2 but has theoretical risks. We report on the first use of CP in children with life-threatening COVID-19, providing data on four pediatric patients with acute respiratory distress syndrome. We measured donor antibody levels and recipient antibody response prior to and following CP infusion. Infusion of CP was not associated with antibody-dependent enhancement (ADE) and did not suppress endogenous antibody response. We found CP was safe and possibly efficacious. Randomized pediatric trials are needed.
The song from my radio filled the car, and floated out into the air and mingled with the cool breeze. Today the chirping of birds were clear and I could hear the rustling leaves. When I stopped at the traffic light, I realized that I never saw how green the trees were and how beautiful the sky with a few wispy clouds passing. Nature seemed to be at peace even when the world around me groaned due to this virus. By whatever name you call it, it is a symbol of tear and fear.Just as I step out of my car, I remember to don my mask and quickly walk along the walkway to the entrance. I look to the branches of a tree on the right of the walkway and noticed the little robin who sings daily without fail. I know the screening questions by heart now and the thermometer scans my forehead. The little sticker placed on my badge feels like a gold star that I received in kindergarten for good behavior. I start another day at the hospital.Everything has changed since this pandemic began. I miss seeing the smiles of people and hearing their voices now muffled through the masks. How this invisible thing has visibly altered the world, as we know it. How every touch and every breath became calculated. You really want to hug a patient as their silent tears soak their masks and you just have to hold back. Nevertheless, I remember that our presence and words can embrace people around us, to comfort and strengthen them.We zoom in for meetings and you may or may not see the face behind the voices or the silent listeners. Birthdays, graduations and send off parties are on hold. Patients lie alone on their beds as their families see and talk to them from a screen. A stranger holds their hand and watch their breathing as the machines chime. Many lives are lost and funerals held quietly and far from homes.I long for the days when we could meet friends in the park or stroll through the mall. Will the days come back when we ate in a restaurant or enjoyed a walk along the beach? I wish those moments could be frozen and kept in a glass jar that could never be shattered.As the orange glow of the sun drenches everything around me, I slowly walk back to my car. A silent prayer floats in the evening breeze; the drive is quite, the sky an impossible hue of gold and purple. The leaves gently rustle and believe it, the birds are still chirping!
Background: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. Objectives: We aimed to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 2019 and March 2020. Methods: Outcome measure was days from PPC consult to death; process measure was days from diagnosis to PPC consult. The project team surveyed oncologists to identify barriers. Plan-Do-Study-Act cycles included establishing target diagnoses, offering education, standardizing documentation, and sending reminders. Results: The 24-month baseline period included 30 patients that died and 25 newly diagnosed patients. The yearlong intervention period included 6 patients that died and 16 newly diagnosed patients. Interventions improved outcome and process measures. Targeted patients receiving PPC ≥ 30 days prior to death increased from 43% to 100%; median days from consult to death increased from 13.5 to 159.5. Targeted patients receiving PPC within 30 days of diagnosis increased from 28% to 63%; median days from diagnosis to consult decreased from 221.5 to 14. Of those without PPC consult within 30 days after diagnosis, 17% had template documentation of the rationale. Conclusion: Interventions utilized met the global aim, outcome and process measures. Use of QI methodology empowered providers to involve PPC. Poor template use was a barrier to identifying further drivers. Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families.
In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status and may under- or over-estimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Post-treatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors.
Background The International Soft Tissue Sarcoma Consortium (INSTRuCT) was founded as an international collaboration between different pediatric soft tissue sarcoma cooperative groups (COG, EpSSG, CWS). Besides other tasks, a major goal of the INSTRuCT is to develop consensus expert opinions for best clinical treatment. This consensus paper for patients with rhabdomyosarcoma of the female genital tract (FGU-RMS) provides treatment recommendations for local treatment, long term follow up and fertility preservation. Methods Review of the current literature was combined with recommendations of the treatment protocols of the appropriate clinical trials. Additionally, opinions of international FGU-RMS experts were incorporated into recommendations. Results The prognosis of FGU-RMS is favorable with an excellent response to chemotherapy. Initial complete surgical resection is not indicated, but diagnosis should be established properly. In patients with tumors localized at the vagina or cervix demonstrating incomplete response after induction chemotherapy, local radiotherapy (brachytherapy) should be carried out. In patients with persistent tumors at the corpus uteri, hysterectomy should be performed. Fertility preservation should be considered in all patients. Conclusion For the first time, an international consensus for the treatment of FGU-RMS patients could be achieved, which will help to harmonize the treatment in different study groups.