Global Health & Childhood Cancer

What do you do if you don’t have enough money to pay for your child’s cancer treatment? This is one of the difficult questions faced by some families in India today. Answering this question is one of the reasons Aroh was founded. Today on the podcast we will speak with Bindu Nair, the founder and managing trustee of Aroh, about her experience running a non-profit organization designed to support families navigating the many trials that cancer brings.  We know that childhood cancer is a very complex disease to treat. Curing patients and caring for families requires much more than a doctor and some medicine. It requires an entire community of people with many different skills working together. Non-profit or non-governmental organizations (NGOs) are a vital part of that community. Many of them provide care for families in ways the medical system cannot or does not.  Aroh is one such organization. They focus on sustaining the child through treatment through medical, financial, nutrition, psycho-social and educational support. The organization is situated in the south of India, working for children with cancer in Tamil Nadu, Kerala, Karnataka, and Andhra Pradesh.  I encourage you to listen to this episode, and maybe, if you’re blessed to be in a good financial position, consider donating. For more information about Aroh, visit their website at https://www.arohonline.org/ and consider what you could do to improve the life of a child with cancer today!   

How does a child with cancer in India access care? If you’ve ever had an illness that was difficult to diagnose, you know that navigating the medical system can be incredibly frustrating. Bouncing back and forth between doctors, taking time off of work or school, waiting for hours upon hours, all while you don’t feel well and do not know what is going on with your body is enough to drive anyone crazy. Unfortunately for families of children with cancer, they know this feeling all too well. Childhood cancer can be very difficult to diagnose and the journeys that families undergo to find answers and receive care can be long and grueling.  To better understand these journeys, Drs. Neha Faruqui, Ramandeep Arora, and their colleagues have studied what they call the “healthcare labyrinth” of accessing childhood cancer care in India. Through discussions with parents and caregivers, they classified the major themes that contribute to difficult or prolonged paths to care. Today on the podcast, we will discuss their findings from their many hours of listening to the families’ stories.  I would encourage anyone listening to the podcast to also read their paper. As I say in the podcast, it reads more like a novel than a journal article, and I found myself emotionally invested in the way the parents described their journeys. It made me appreciate anew how important it is to establish robust health systems that can rapidly identify patients and refer them to appropriate tertiary care. Lastly, this discussion is not meant to be a criticism of the Indian healthcare system. It is an enormous system that is responsible for caring for 1.3 billion people! There are many things it does very well! But of course, there are things that can be improved. As Dr. Arora says in the episode, this paper, and our discussion is about listening to the caretakers to discover how providers everywhere can better care for not only the patient during treatment but for the entire family through the entire cancer experience.  Read the full study here: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x Dr. Neha Faruqui:  Neha Faruqui recently completed her Ph.D. from the University of Sydney focusing on access to care for children with cancer in India and the implications for Universal Health Coverage. Her previous work experience included public health projects at the Indian Government level and at the grassroots level with NGOs. Neha’s interests lie in health systems research, non-communicable disease research, and health policy and planning. She also tutors the Masters of Global Health students at the University of Sydney on various subjects.   Dr. Ramandeep Singh Arora Senior Consultant, Paediatric Oncology, Max Super Speciality Hospital, New Delhi Honorary Head, Quality Care, Research and Impact Analysis, Cankids India, New Delhi Secretary, Indian Pediatric Oncology Group (InPOG) Blog – http://childhoodcancerindia.blogspot.com     Find out more about our sponsor! Please visit Resonance at www.amplifyinghealth.com 

How should healthcare workers caring for immunocompromised patients think about the coronavirus epidemic?  The novel coronavirus, now called COVID-19, is a worrisome disease, particularly for healthcare workers caring for immunocompromised patients. What do providers taking care of kids with cancer or other vulnerable patients need to know?. In this episode, I interviewed one of the world’s foremost infectious disease specialists who is currently working to develop a vaccine for COVID-19. Dr. Peter Hotez, M.D., Ph.D. is a pediatrician-scientist with more than 20 years of experience developing vaccines for neglected tropical diseases. He’s also the Dean for the National School of Tropical Medicine at the Baylor College of Medicine in Houston, Texas. He’s the endowed Chair in Tropical Pediatrics at Texas Children’s Hospital and Co-Director of Texas Children’s Hospital Center for Vaccine Development. For more information about Dr. Peter Hotez, M.D., Ph.D., click this link.  This is very much a crossover episode. It is primarily about the virus and the global health community’s ability to address it. But it is also about pediatric cancer as 1) our patients are more vulnerable to infections and 2) most pediatric cancer patients live in countries with public health systems that may struggle to contain the virus. Given these concerns, it is important that healthcare providers stay aware of the situation. So in this episode, we will discuss what is known about the virus and how to develop a vaccine for it with one of the world’s most respected global health experts in vaccine development. We’ll hear how he views the emerging disease, his thoughts about the timeline for a working vaccine, and how the global health community can win the battle against this potential pandemic. Recent news articles featuring Dr. Hotez: https://www.foxnews.com/opinion/a-tale-of-3-nations-peter-hotez https://www.youtube.com/watch?v=1ILrCQp0f8Q https://www.nytimes.com/aponline/2020/02/06/health/ap-us-med-china-outbreak-vaccines.html https://khn.org/news/facts-vs-fears-five-things-to-help-weigh-your-coronavirus-risk/   What do we know about COVID-19? The 2019 novel coronavirus or “COVID-19” as the World Health Organization now calls it, is an epidemic that is currently affecting much of China and Southeast Asia and could become a pandemic that causes active disease on all the continents. As of when we published this episode, there are at least 1,600 mortality cases recorded and the virus has infected more than 69,000 people worldwide. The US Centers for Disease Control and Prevention believes that the virus will continue to spread globally across countries and even in the US. Though we know that a lot of coronavirus strains are common like the ones causing mild upper-respiratory tract illnesses such as common colds, this one has the ability to cause a severe, even fatal, respiratory disease.  What are the signs and symptoms and how can we protect ourselves? Some of the COVID-19 signs and symptoms can range from fever, cough, runny nose, sore throat and difficulty in breathing. It can also easily affect people who have compromised immune systems such as those with diabetes, heart and lung problems and especially the elderly and immunocompromised individuals.  You may ask yourself, how can we avoid this disease? How can an individual protect itself from the virus? Well, just like how you protect yourself during flu season, you can do the same with coronavirus.  These measures include:  Avoiding any close contact with people who are sick.  Avoid touching your eyes, nose, and mouth.  Stay home when you are sick and avoid close interaction with family members.  Cover your mouth when you cough using a tissue or sneeze with a tissue, then throw the tissue immediately in the trash. Make it a habit to always clean and disinfect frequently touched objects and surfaces using a regular household cleaning sprays or wipes.  Keep up to date on the latest news about the virus in your area    You can find more information in the links below. https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html https://www.cdc.gov/coronavirus/2019-ncov/index.html https://www.cdc.gov/coronavirus/2019-ncov/faq.html https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30183-5/fulltext https://www.globalhealthnow.org/2020-02/coronavirus-expert-reality-check#hotez https://edition.cnn.com/2020/02/16/health/coronavirus-how-to-protect-yourself-trnd/index.html Elsevier coronavirus information center: https://www.elsevier.com/connect/coronavirus-information-center up-to-date coronavirus information center: https://www.uptodate.com/contents/coronavirus-disease-2019-covid-19#H1466934285

In the United States, 500-600 children are diagnosed with Wilms tumor annually. The disease accounts for about 5% of all childhood cancers and is the most common kind of kidney cancer in children. In high-income countries like the United States, the 5-year survival rate for low-grade Wilms tumor is around 90%, which means it is widely perceived as a “curable” tumor. Unfortunately, “curable” is not a concept that crosses international boundaries. In low- and middle-income countries, like many in Africa, the survival rate can be very, very low.  So how do we improve cure rates for a treatable tumor?  In this episode, Dr. Festus Njuguna and Dr. Trjn Israels discuss their collaborative multi-center Wilms tumor project that aims to increase the survival rate and decrease treatment abandonment of pediatric Wilms tumor patients in Africa. This collaborative brings together medical providers from treatment centers in Malawi, Ghana, Kenya, Cameroon,  and Zimbabwe to discuss how to implement the SIOP PODC Adapted Treatment Guidelines for Wilms Tumor at each center. Their results, so far, have been impressive. After 4 years of the collaborative, survival has risen from 52% to 69% and treatment abandonment has decreased from 23% to 12%! The project is now aiming to further reduce treatment abandonment and reduce death during treatment by improving support care.  One of the important things this project needs is financial support.  If you are interested, you can reach out to Dr. Njuguna or Dr. Israels for more information on how you can help to improve the lives of pediatric Wilms tumor patients in Africa. Details are posted below. https://siop-online.org/collaborative-wilms-tumour-africa-project/ https://www.worldchildcancer.us/what-we-do/where-we-work/wilms-tumor-africa-collaboration https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.26945

How many healthcare professionals in the world are caring for children with cancer? This is a very important question. How many people are caring for kids with cancer around the world? Where are they located? What regions have few or no doctors available? For a child with cancer, the answers to these question can be the difference between receiving life saving treatment or no treatment at all. Until now, there has been no systematic assessment of the global services available to childhood cancer patients. Dr. Jennifer Geel and a dedicated team of SIOP members are now trying to change that.  For the last year, they have been surveying providers in Africa to find out what services are available and where they are located. As you will hear, this is an enormous undertaking, but they have already produced some striking results. Their team is now extending the project to include Central and South America. So, if you are a healthcare provider caring for children with cancer in Africa or Latin America (or really any low- or middle-income countries!), then take the survey. You can find more information at one of the links below! https://siop-online.org/globalmapping/ 

How much does it cost to cure childhood cancer in Africa?  The cost of cancer care in Africa, and other low- and middle-income countries, is an enormous question. Cancer is a very complex disease to treat. It takes time, medicines (and maybe surgery and maybe radiation), a team of healthcare professionals and a comprehensive health system to make it happen. Because of the complexity, one might assume that treatment is prohibitively costly in resource-constrained settings. But is this assumption correct? On this episode I will discuss a recent study that was published by a team of researchers working in Uganda about the cost of treating (and curing) Burkitt lymphoma in the country. We will hear from the lead author on the paper, Dr. Avram Denburg, who has done a lot of work in the intersection between global health systems and pediatric cancer. You’ll hear that the team found Burkitt lymphoma to be very, very cost effective to treat in Uganda. How this information generalizes to other diseases and other countries remains to be explored, but at a minimum this is a very important piece of evidence that treating and curing childhood cancer in resource-constrained settings is economically advantageous under certain conditions. The study we discuss: The cost effectiveness of treating Burkitt lymphoma in Uganda WHO cost effectiveness publication: WHO Guide to Cost Effectiveness Analysis Another recent and relevant cost study (not discussed in the episode): Evidence From Ghana Indicates That Childhood Cancer Treatment in Sub-Saharan Africa Is Very Cost Effective: A Report From the Childhood Cancer 2030 Network Other interesting work by Dr. Denburg: Political priority and pathways to scale-up of childhood cancer care in five nations Bio: Dr. Avram Denburg, MD MSc PhD FRCPC is a staff oncologist and clinician-scientist in the Division of Hematology/Oncology at the Hospital for Sick Children. He has a Master of Science in Health Policy, Planning and Financing from the London School of Economics, and a PhD in Health Policy from McMaster University. Dr. Denburg’s research centres on the analysis and strengthening of childhood cancer care systems, with specific focus on issues related to pharmaceutical policy and drug access. He has ongoing collaborations in the field of global oncology with a range of national and international partners, including the Union for International Cancer Control, the World Health Organization, and the Pan-American Health Organization. Dr. Denburg is Immediate Past Chair of the Essential Medicines Committee for the International Society of Pediatric Oncology and co-founder of Access to Childhood Cancer Essentials, a global initiative to improve access to essential medicines and therapeutics for children with cancer. He serves as an expert member of the pan-Canadian Oncology Drug Review for the Canadian Agency for Drugs and Technologies in Health.  

Have you ever completed a very difficult puzzle? (Below is just an intro! – Click here to go to the whole essay.  You don’t want to miss it!) Perhaps it was thousands of small pieces with colors that blend together, so that most of the pieces appeared very similar. Do you remember the overwhelmed feeling you had when you first dumped the pieces onto the table? “Good grief”, you may have thought, “this puzzle is impossible.” But, after the moment of defeat, you look at the picture on the box and see what the puzzle could be. Perhaps it will be an amazing waterfall, or city illuminated at night, or a basket full of kittens, and you know that at the end of all your hard work the pieces will come together, and the picture will be complete. So, thinking of that future day when you will feel the satisfying snap of the last piece falling into place, you sit down and get to work. For many people, global pediatric oncology (GPO) is like a giant, overwhelming puzzle. The complexity of the problem and the way the pieces are scattered may leave one feeling lost how to begin. However, despite its difficulty, a community of dedicated doctors, nurses, cancer survivors, parents, politicians, and many others has been working to solve it. Over the last three decades, this community has made considerable progress toward understanding the necessary conditions for successful childhood cancer treatment anywhere in the world. Now, new research has completely changed the perception of childhood cancer as a global health concern. As a result of this new information, the shape of the puzzle is changing. Whereas before, many pieces had been put together, but there was no structure that unified the whole, now most of the edge pieces are in place, and the outline of the puzzle can be seen in its entirety. The edges have given the puzzle a definite structure, which helps the global oncology community understand both how the different completed parts sit in relation to each other and what important information is still missing. In a series of essays, I want to present to you a broad understanding of what I’m calling the edges of the GPO puzzle: those essential concepts without which one cannot fully understand pediatric oncology as a global health concern. Concretely, we will review the emerging research that clarifies the magnitude of the problem of childhood cancer, demonstrates effective solutions exist that can save lives today, quantifies the costs associated with treatment, and charts a clear path forward. To discuss the first edge, we will directly address the question, “what is the global burden of pediatric cancer?” Read the first visual essay: The Global Puzzle – Edge #1 Hear past episodes this essay references: episode 12, episode 14, and episode 16 Read more about what happened at SIOP – the International Society of Pediatric Oncology and its Annual Congress here!   

How do we measure the impact of a childhood cancer diagnosis?  There are many ways to we could try to measure the total burden of childhood cancer in the world. We could count the number of new cases per year, for instance, a measure called incidence. Or we could count the number of patients who do not survive their disease within a certain time interval, which is called the mortality rate. These measures convey useful information about how many new cases of childhood cancer develop in the world and what are their consequences, but they don’t tell the whole story. To really understand the impact of a cancer diagnosis, we have to consider what it takes away from the patients. Without cancer, many patients who die early may have lived long, healthy lives.  Even for patients who survive, if they never developed cancer, they would never have suffered the loss of wellbeing due to years of painful treatments. Realizing that this is an important perspective from which to count the costs of cancer, researchers have developed an estimation instrument called the “Disability-Adjusted Life Year”, or DALY for short. Looking at cancer from the perspective of “what might have been” takes some getting used to, but it is worth understanding because it has allowed the global cancer community to uncover some very surprising things about the global burden of cancer and how it compares to other prominent global health concerns. On this episode, we talk to Dr. Lisa Force and Dr. Nickhill Bhakta, two physicians and researchers who are part of a team that is using DALYs to learn new things about cancer and its consequences. We will spend time discussing what DALYs are, how they are measured, and how they are used. We will also learn about the important and surprising results of their recent study and discuss what they mean for the global oncology community. The paper we discuss: The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017 Links mentioned in the episode: Collaborate with the Global Burden of Disease Study! GBD Data Visualization Tool (If you like playing with data, seriously check this out!!) GBD Results Tool (This one too!)      

Food is Medicine: Promoting nutrition in global oncology Studies show that children with cancer who are well nourished have better treatment outcomes than those who are malnourished. Unfortunately, many children in developing countries are malnourished even before they are diagnosed with cancer, their nutritional status only worsens due to the combined effect of the disease and its treatment.  Dr. Nyi Nyi Kyaw in Myanmar knows this reality first hand. As a dietician at Yangon Children’s Hospital in Myanmar, his job is to ensure the kids in the inpatient oncology unit receive adequate nutrition while they are hospitalized and to educate the children and their families on good nutrition practices when they are discharged. Today on the podcast, we will discuss the nutritional landscape in Myanmar and what it means for pediatric oncology patients. We will hear from Dr. Kyaw and one of his collaborators in the project, Erin Gordon, a dietician at Boston Children’s Hospital. They, with their respective institutions, have collaborated to expand the nutritional services offered to the pediatric oncology patients in Myanmar. We will hear from them not only about the important work the program is doing, but also about the importance of proper nutrition in global oncology. After all, if better nourished kids have better treatment outcomes, then it should be acknowledged that food itself is medicine.   About the guests   Dr. Nyi Nyi Kyaw, M.B,B.S (YGN), M.Sc (Nutrition & Dietetics) (Bedfordshire, UK), Member of Nutrition Society (UK), is a clinical nutrition specialist at Haemato-Oncology Unit at Yangon Children Hospital . Yangon Child Hospital gives nutrition care to both inpatients and outpatients.  He is currently working as a volunteer in neurology unit for ketogenic diet in recurrent epilepsy. In Myanmar, he is also recognized as Social Influencer on Nutrition and Health Care with the name of Dr. Nutrition among the locals. That being said, he also participates in public engagement for nutrition education via radio, television and social media. Erin Gordon, MS, RD, LDN, CDE is a registered dietitian at Boston Children’s Hospital working with pediatric oncology patients both in-and outpatient. Both domestically and internationally, Erin has focused her career on expanding nutrition access in under resourced communities  especially for those children and families living with chronic disease.  For the past 2 years Erin has been collaborating with Yangon Children’s Hospital to develop and implement an inpatient nutrition program for pediatric hematology and oncology patients.

The Transformative Perspective In the last few months, evidence has emerged that pediatric cancer is more common, more deadly, and responsible for a much larger proportion of the global burden of disease than we previously believed. Moreover, recent publications show that pediatric oncology is not only possible to treat in low-resource countries with risk-adapted protocols, but cost-effective to treat as well. Taken together, this evidence transforms how a developing healthcare system should see pediatric cancer – from a set of rare diseases that are difficult to treat to one of the largest drivers of pediatric disease burden for which cost-effective treatments already exist. Dr. Nickhill Bhakta is a physician at St. Jude Children’s Research Hospital in the Department of Global Pediatric Medicine. His research interests include estimation of global pediatric oncology disease burden, epidemiology, and assessment of economic consequences of treatment. On this episode of the GHCC podcast, we discuss several papers he recently helped published that contribute to the expanding vision of pediatric oncology’s importance in global health. Recent papers referenced in the show Childhood cancer burden: a review of global estimates Estimating the total incidence of global childhood cancer: a simulation-based analysis Global childhood cancer survival estimates and priority-setting: a simulation-based analysis The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017 Click here to email Dr. Bhakta  

SIOP PODC Nursing Working Group: The Advocacy Toolkit Today on the podcast, we discuss a new advocacy toolkit that nurses can use to help improve the safety of their work environment and the quality of care they provide to patients. This discussion is a follow-up to episode 11, where we discussed the Baseline Nursing Standards that the SIOP PODC Nursing Working group had developed. In that episode we discussed what the standards are and why they are necessary. In this episode, we will explore how these standards can be implemented a treatment center.  To aid in implementation, the Nursing Working Group developed an advocacy toolkit to equip nurses to discuss the the standards with their bosses and other healthcare stakeholders. Nurses who are on the frontline of patient care are some of the best equipped providers to articulate how the delivery of care can be improved, so it is vital that they feel supported and effective in promoting change where they work! Find all the resources in the advocacy toolkit here!    

Where are all of the pediatric cancer patients? There are times where new research completely changes the way one looks at a problem.  The two articles we discuss on this episode changed the way I think about global oncology.  Prior to reading the articles, if you asked me what is the most common reason for mortality in global pediatric oncology, I would have probably said substandard or unavailable care.  It’s been demonstrated over and over in the literature, as care quality improves, survival curves dramatically increase. However, this answer is likely wrong. The real answer is a patient not being diagnosed. As you will hear today, it is estimated that there are around 400,000 new cases of childhood cancer each year for kids ages 0-14, and 43% of of these kids are not being diagnosed and therefore not receiving any treatment at all.  43%! That amounts to between 180,000 – 200,000 patients per year going undiagnosed, and around 3 million going undiagnosed by 2030. For comparison, prior to this study the best estimates reported a global incidence of 224,000 per year, meaning we now think we are not diagnosing almost as many patients as the number of previously estimated total cases.  This is a public health catastrophe! This means that medical care availability and strong health systems that can accurately diagnose and refer pediatric patients with cancer are key to improving survival. To better understand what these numbers mean and how they were estimated, I will be talking to two researchers, Dr. Jennifer Yeh and Zachary Ward, who together with their collaborators recently published papers in Lancet Oncology estimating global incidence and survival of childhood cancer using sophisticated simulation techniques.  Large scale simulations using super computers and fancy statistics may be new for many people in the medical field (including me) and understanding the reliability of these estimates may be difficult.  In this episode we will talk through not only the numbers the researchers reported, but how they went about calculating them, with the hope that the listener will come away with a better conceptual understanding of the techniques they used and greater confidence to interpret their findings for themselves.  This is not the last you will hear about these statistics.  In future episodes we are going to circle back around to these findings and discuss their implication for the biomedical side of global oncology as well as the public health and health policy sides, so stay tuned! Paper 1 – Estimating the total incidence of global childhood cancer: a simulation-based analysis Paper 2 – Global childhood cancer survival estimates and priority-setting: a simulation-based analysis About the guests: Dr. Jennifer Yeh, PhD is a decision scientist whose research focuses on improving health outcomes at the population level. She has extensive experience applying decision-analytic modeling and cost-effectiveness analysis methods to evaluate clinical guidelines and health policy. Her research focuses primarily on cancer control and spans across the cancer continuum, ranging from gastric cancer prevention to childhood cancer survivorship. Dr. Yeh has developed and applied methods of decision analysis, simulation modeling and economic evaluation to identify opportunities to enhance cancer screening and surveillance programs. In particular, she has developed novel approaches that incorporate the effects of early life exposures on long-term health outcomes. Her work on childhood cancer survivorship focuses on how treatment-related risks for secondary cancers, cardiac events and other late effects impact long-term health and quality of life. She was recently awarded a grant from the American Cancer Society to evaluate secondary cancer screening guidelines for childhood cancer survivors. Dr. Yeh is an Assistant Professor of Pediatrics at Harvard Medical School and Associate Scientific Researcher in the Division of General Pediatrics at Boston Children’s Hospital. She graduated from the University of Colorado at Boulder with a B.A. in Biology, received an M.S. in Health Policy and Management from the Harvard T.H. Chan School of Public Health, and completed her doctorate from the Health Policy PhD program at Harvard University, concentrating in Decision Sciences. Upon completing a NCI-sponsored post-doctoral fellowship at the Harvard T.H. Chan School of Public Health and Dana Farber/Harvard Cancer Center, she was awarded a NCI K07 Career Development Award. She is a current recipient of an American Cancer Society Research Scholar Grant. ———————————— Zachary Ward, MPH is a decision scientist and PhD candidate with research interests in computational science and global health. His research has been published in journals such as the New England Journal of Medicine, The Lancet Oncology, and Health Affairs. He has worked as a programmer/analyst at the Center for Health Decision Science at the Harvard T.H. Chan School of Public Health since 2011, and entered the Decision Sciences concentration of the Ph.D. Program in Health Policy at Harvard University in 2015.  He is also pursuing a secondary field in Computational Science and Engineering. He received his undergraduate degree in Global Health Management from Seattle Pacific University and his Masters of Public Health from l’Ecole des Hautes Etudes en Santé Publique (EHESP) in Paris, with a concentration in Epidemiology. Originally from Kenya, Zach has worked with various community-based NGOs in Tanzania, Malawi, and Rwanda, creating health information systems and management tools.  At Harvard he has developed microsimulation models focused on various topics, including childhood obesity, childhood cancer, and maternal mortality.

SIOP PODC Nursing Working Group: Baseline Nursing Standards Nurses are one of the most important members of the healthcare team for children with cancer. In many ways, nurses are the final common pathway for providing care in both inpatient and outpatient settings.  Oftentimes in low- and middle-income countries (LMIC), healthcare systems do not emphasize nursing education and standards for nursing care are poorly defined.  To meet this need, the International Society of Pediatric Oncology (SIOP) Pediatric Oncology in Developing Countries (PODC) Nursing Working group has published baseline nursing standards that describe the minimum requirements for nurses to deliver safe and effective care to pediatric oncology patients.  We’ll hear from three members of the Nursing Working Group, Lisa Morrissey, Glenn Mbah, and Julia Challinor, all of whom are highly involved in the developing and dissemination of the standards. 1. The baseline standards: Paediatric Oncology Nursing Care in Low- and Middle-Income Countries: A need for baseline standards 2.  Survey findings: Disparities in the delivery of pediatric oncology nursing care by country income classification: International survey results 3.  Further survey findings: Predictors of Hospitals’ Nonachievement of Baseline Nursing Standards for Pediatric Oncology 4.  Find out more about the baseline standards and how to implement them: SIOP PODCT Nursing Baseline Standards page Guest Biographies (from left to right in post picture) Lisa Morrissey, MPH MSN RN CPHONis a nurse leader in the Dana-Farber/Boston Children’s Hospital (DF/BCH) Cancer and Blood Disorders Program in Boston, MA. She holds an MSN degree in Nursing Administration from Northeastern University, and a MPH in Healthcare Management from Harvard School of Public Health. Lisa is the Nurse Manager for the Inpatient Hematology/Oncology/Research at BCH, and Director of the BCH Global Nurse Fellowship program. She has led several nursing global partnerships in resource-limited countries including Ghana, the Dominican Republic and Myanmar, promoting education, professionalism and collaboration for pediatric oncology nurses. Lisa is chair of the SIOP Nursing Committee and an active member of the SIOP Nursing Baseline Standards taskforce. Glenn Mbah Afungchwi, RN, MPH, is the programme coordinator for World Child Cancer in Cameroon and projects coordinator for the Cameroon Paediatric Oncology Group. He is the current nurse representative at the board of SIOP Africa, co-chair of the SIOP Pediatric Oncology in Developing Countries (PODC) Traditional and Complementary Medicine (T&CM) working group, and co-coordinator of the Supportive Care for Children with Cancer in Africa (SUCCOUR) project. He is involved in the WHO Global Initiative for Childhood Cancer. Glenn is also studying for a PhD at Stellenbosch University, South Africa, with a research interest in improving access to care for children with cancer. Julia Challinor, RN, PhD, MS in Education and MS in Med Anthropology, is a graduate of Wheelock College, Boston, MA; San Francisco State University, CA; the University of California, San Francisco, CA; and the University of Amsterdam, The Netherlands. A former teacher, Julia was the Educational Liaison for children with cancer and those who had survived their disease at the University of California, San Francisco from 1993-2003. During 1994-2006, she also headed A Tomorrow for Children Foundation and worked in partnership with pediatric oncology centers in Latin America. As an international nursing consultant for oncology with an anthropological perspective, Julia seeks to strengthen nursing resources and opportunities in countries with limited resources. From 2011-2017, Julia’s professional focus focused on mentorship of pediatric oncology nurses in Ethiopia and she has a current nursing collaboration in India (started in 2016). Julia works to develop an interconnected multidisciplinary approach to cancer care that acknowledges nurses and parents as key partners.

Parents of childhood cancer patients are arguably the most important members of a child’s treatment team.  Yet many times in resource-limited settings, parents are not equipped with the knowledge to successfully care for the specialized heath needs fo their children.  On this episode of GHCC, we discuss a multi-country assessment of the educational needs of parents.  Dr. Erin McCann at the Harvard T.H. Chan School of Public Health, along with partners in Guatemala, El Salvador, Mexico, and Panama, explored the lingering questions that parents expressed after their child’s cancer diagnosis, and developed multimedia educational tools to help answer their questions and support the parents.  We will hear from both Dr. McCann, and one of her collaborators from El Salvador, Dr. Fuentes Alabi explain the project and discuss what it took to successfully work together to make the project happen.  What’s more, Dr. McCann was able to finish this project as a medical trainee.  Her experience is instructive for other trainees in high-income countries who are interested in global oncology but find it difficult to successfully complete transnational projects. Download Dr. McCann’s poster about the project here. Download Dr. McCann’s powerpoint presentation about the project here.

Episode Summary On this episode we wrap up our 5-part series on treatment abandonment.  In the last 4 episodes on the topic, (here, here, here, and here), we discussed the reasons why people abandon treatment and different ways to fix the problem.  This episode is all about applying these insights anywhere in the world where abandonment is a problem.  Paola’s central message in this episode is clear: it is time to turn knowledge into action to end pediatric cancer treatment abandonment. Ways to get involved Join the SIOP-PODC Treatment Abandonment working group (Go to Cure4Kids.org -> make a FREE username and password -> go to GROUPS tab -> search “abandonment” -> click the group name -> click “subscribe”) Review the literature on the TA working group website Review the “Abandonment of Treatment” curriculum on Cure4Kids (Go to Cure4Kids.org -> click the “Curriculum” tab -> navigate down to “Abandonment of Treatment”) Email Dr. Friedrich about your interest in abandonment or if you have a story you would like to share (or you can email Mark with the GHCCpod) Learn implementation science methodologies and dissemination strategies to translate knowledge about abandonment into clinically-actionable insights  Download Dr. Friedrich’s presentation from SIOP 2018 to find out more!    

Episode Summary Today we talk to Dr. Saskia Mostert, MD, PhD, a pediatric oncologist in the Netherlands who has tremendous experience working with healthcare providers to improve the care of patients in Indonesia and Kenya. Much of her works centers around the time she has spent listen to families to understand how they experience treatment, so that providers can find ways to improve their experience.  She has found that a large proportion of treatment abandonment can be explained by lack of adequate communication between medical teams and the patients, and she has demonstrated through her work that providers can build trust with patients and improve their communication through parent-focused education programs.  Her approach has helped the global oncology community to better understand the social and cultural reasons why patients may abandon treatment and her insights have helped to dramatically reduced treatment abandonment in the locations she has worked. If you’re in interested contacting Dr. Mostert, you can email her at S.Mostert@vumc.nl  Download Dr. Mostert’s SIOP 2019 Treatment abandonment lecture here: 2018 SIOP Beyond Socio-Economics – Contribution S. Mostert PODCAST Find more of Dr. Mostert’s work on her Research Gate profile

Episode Summary Today we talk to Dr. Saskia Mostert, MD, PhD, a pediatric oncologist in the Netherlands who has tremendous experience working with healthcare providers to improve the care of patients in Indonesia and Kenya. Much of her works centers around the time she has spent listen to families to understand how they experience treatment, […]

This is the second of a two-part episode.  If you missed the first episode, you may want to listen to it first here.   Today on the podcast, we talk to Dr. Eyglo Gudmundsdottir about the incredible stress that parents experience while caring for their child with cancer.  She is unique authority on this subject, not only because she is a practicing clinical psychologist, has a PhD in medical science from Karolinska Institutet in Sweden, and wrote her thesis on vital exhaustion (we’ll discuss what this is in the show) in parents of children with cancer, but also because she cared for her son through his decade-long battle with cancer.  So from both the parental perspective and the research perspective, she has seen, as she says, “all the colors of this nightmare.” Further resources about Dr. Gudmundsdottir’s research: Download Dr. Gudmundsdottir’s lecture slides about Vital Exhaustion here. Selected Papers: Psychological outcomes in Swedish and Icelandic parents following a child’s cancer—in the light of site-related differences (paywall) Psychological resilience and long-term distress in Swedish and Icelandic parents’ adjustment to childhood cancer  

7. “All the Colors of this Nightmare” – Part 2 – Parental Stress and Vital Exhaustion with Dr. Eyglo Gudmundsdottir

Today on the podcast, we talk to Dr. Eyglo Gudmundsdottir about the incredible stress that parents experience while caring for their child with cancer.  She is unique authority on this subject, not only because she is a practicing clinical psychologist, has a PhD in medical science from Karolinksa Institutet in Sweden, and wrote her thesis on vital exhaustion (we’ll discuss what this is in the show) in parents of children with cancer, but also because she cared for her son through his decade long battle with cancer.  So from both the parental perspective and the research perspective she has seen, as she said, “all the colors of this nightmare.” Further resources about Dr. Gudmundsdottir’s research: Download Dr. Gudmundsdottir’s lecture slides about Vital Exhaustion here. Selected Papers: Psychological outcomes in Swedish and Icelandic parents following a child’s cancer—in the light of site-related differences (paywall) Psychological resilience and long-term distress in Swedish and Icelandic parents’ adjustment to childhood cancer