Expanding the Message to Include Psychosocial Care
Through Publications, Conferences, and Presentations
The B+ Foundation gives us a lot to "be positive" about!
Mattie Miracle met Joe McDonough, the Founder of The Andrew McDonough B+ Foundation in March of 2012, when he and his daughter, Ali, attended Mattie Miracle’s Psychosocial Symposium for Childhood Cancer on Capitol Hill. The Symposium launched a three year long international research project to develop the first Psychosocial Standards of Care. The Standards were published in a special supplement of Pediatric Blood & Cancer in 2015. These historic evidence-based Standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care. Soon after the Standards were published, The B+ Foundation became one of the first professional endorsers of the Standards, signaling their commitment to evidence based psychosocial care.
The Andrew McDonough B+ Foundation is named in memory of Andrew McDonough. Andrew battled leukemia, septic shock, and complications of childhood cancer for 167 days before passing away on July 14, 2007, at the age of 14. Andrew’s B+ blood type became his family’s and friends’ motto throughout his fight against childhood cancer – to “Be Positive.” The B+ Foundation is the largest provider of financial assistance to families of kids with cancer in the US, helping over 4,000 families this year and have proudly provided funding to over 150 critical, cutting-edge childhood cancer research projects at top institutions globally.
Mattie Miracle is committed to seeing the Psychosocial Standards of Care operationalized at every cancer center in the Country. However, to achieve this goal, implementation research must be conducted to 1) assess the extent childhood cancer programs in the United States are delivering care consistent with the Standards, 2) capture the voice of family caregivers to determine which Standards of Care should be prioritized for implementation, and 3) identify barriers and facilitators of implementing the prioritized Standards.
To conduct a large-scale implementation study of this kind, requires significant funding. Mattie Miracle is thrilled to announce that The B+ Foundation has generously awarded the Standards Research Team a $115,000 grant to pursue this cutting-edge research. The team conducting this study represents a strong partnership between family advocacy groups (Mattie Miracle Cancer Foundation, Momcology) and researchers (Dr. Anne Kazak, Dr. Kimberly Canter, Michele Scialla, Dr. Emily Pariseau, Dr. Kamyar Arasteh, Dr. Lori Wiener) who are leaders in the development, testing and implementation of psychosocial care in pediatrics.
Victoria Sardi-Brown (Mattie Miracle Co-Founder and President) stated, “We are grateful to Joe McDonough and The B+ Foundation for their long-standing commitment to The Psychosocial Standards of Care. When it came time to seek funding for this groundbreaking implementation research study, Mattie Miracle chose to partner with The B+ Foundation. The B+ Foundation is a leader in the childhood cancer advocacy community, they generously support cutting edge research, and they have been an integral part of the Standards of Care development journey since 2012. I am confident with B+ Foundation’s financial support that the Standards will continue to guide and to support the psychosocial care of children with cancer and their families.”
Joe McDonough (The Andrew McDonough B+ Foundation Founder) stated, “There is no disputing the significant physical challenges that a child with cancer faces, but far too many people don’t realize the profound emotional challenges that the children – and their families – face. We have tremendous admiration for Mattie Miracle for advancing the need for and then creation and implementation of the Psychosocial Standards of Care. While there have been many people involved in the Standards, I will always thank Vicki and Peter Brown for being the catalysts. The Andrew McDonough B+ Foundation is proud to be a partner in their efforts.”
Mattie Miracle's educational and research home is within the American Psychosocial Oncology Society (APOS). We have held think tanks and symposia at their national conferences and we house our young investigator research grants within APOS.
On March 10, Mattie Miracle funded an invited symposia entitled, Implementing the Pediatric Psychosocial Oncology Standards of Care: Research and Lessons Learned from a Mattie Miracle Cancer Foundation/ APOS Partnership. The Symposia was moderated by Dr. Lori Wiener and featured the following Mattie Miracle Grantees:
Alexandra Psihogios, Ph.D.; Children’s Hospital of Philadelphia, Pennsylvania
Kimberly Canter, Ph.D.; Nemours Center for Healthcare Delivery Science, Delaware
Kathryn Davis, M.A.; Boston University, Massachusetts
Stephanie Hullmann, Ph.D., HSPP; Indiana University School of Medicine, Indiana
Karen Long-Traynor, Ph.D.; Rutgers Cancer Institute of New Jersey
Mattie Miracle was featured as a Community Partner at APOS' 2022 conference. Please listen to Mattie Miracle's opening greeting and learn more about our partnership with APOS,
I am pleased to provide an exciting update about the Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a web-based psychosocial intervention for parents and caregivers of children with cancer that I have been developing since 2015. The support of the Mattie Miracle Cancer Foundation has been extremely important as my program of research related to eSCCIP has grown over the past several years.
As the inaugural recipient of the Mattie Miracle Early Investigator Award, I was able to conduct a rigorous pilot test of eSCCIP in partnership with Inova Life with Cancer, a program of the Inova Schar Cancer Institute. At the conclusion of this award, the Mattie Miracle Cancer Foundation generously provided additional funding to develop a Spanish-language adaption of eSCCIP, helping to extend the reach of the program to a critical subset of parents who have been historically excluded from many research studies and intervention programs.
The work that I have been able to conduct with support from Mattie Miracle is closely aligned with the Standards for Psychosocial Care for Children with Cancer and Their Families. Additionally, this work helped to lay the groundwork for my successful R01 grant submission to the National Cancer Institute, funded in early 2022. This is a major research grant that will allow me to lead a multisite study to test the English and Spanish versions of eSCCIP at several pediatric hospitals across the United States. In additional to examining several important psychosocial outcomes, this award will also allow us to begin to explore possible cost savings of eSCCIP, an essential step in scaling up the intervention. This is an exciting and essential step in the process of extending the reach of eSCCIP to all parents and caregivers who might benefit from the intervention.
Generous support from Mattie Miracle has also helped me attend national conferences where I am able to share eSCCIP with the scientific community and discuss early findings from my pilot work. In April of 2022, after several long years of virtual conferences, I will be attending an in-person meeting of the Society of Pediatric Psychology and speaking as part of a panel about conducting psychosocial intervention work in pediatric oncology. I am also excited to present with other Mattie Miracle supported researchers at the 2022 virtual meeting of the American Psychosocial Oncology Society, and eagerly await the next time that we can gather in person.
On an additional personal and professional note, the Browns have become close colleagues and I am very fortunate to have their support and partnership as we work towards the shared goal of improving psychosocial care for children with cancer and their families. We have important future projects in the works, and I look forward to the next steps!
Mattie Miracle is proud to support innovative psychosocial research that supports children with cancer and their families. Alexandra Psihogios is a psychologist and behavioral scientist at Children's Hospital of Philadelphia (CHOP). Alex, with the help of a Mattie Miracle grant, developed an initiative to support adolescents and young adults (AYA) with cancer adhere to taking their oral medications.
Missing medications, even with the best of intentions, is not uncommon. Especially for adolescents and young adults who are learning how to be independent with medications for the first time, or want their lives to be as normal and medication-free as possible. There are many barriers to medication adherence such as forgetting, difficulties swallowing pills, not liking the taste of medications, and undesirable medication side effects.
Adolescents and young adults gravitate to technology and social media. Therefore, Alex developed adherence video clips with the help of Tik Tok, a video-focused social networking service. The five Tik Tok videos that were created can be used in: 1) clinical care (providers can share the video at the start of maintenance therapy), 2) as a component of app-based adherence promotion interventions, and 3) disseminated widely to other cancer centers via Twitter.
Funding Innovation -- Published Pilot Study
Mattie Miracle awarded a research grant to Dr. Alexandra Psihogios through the American Psychosocial Oncology Society. The grant funded a pilot study to explore the feasibility and acceptability of implementing text-based assessments of oral chemotherapy adherence in adolescents and young adults with leukemia. The Foundation is honored that this innovative work was recently published in Pediatric Blood & Cancer, a top-tier medical journal.
Non-adherence to treatment is a pervasive issue, particularly among adolescents and young adults, and this results in devastating health consequences and significant health care costs. Routine assessment of treatment adherence is one of the 15 evidence-based Psychosocial Standards of Care. The Standards are designed to ensure that optimal psychosocial care is provided to children with cancer and their families. We invite you to read Dr. Psihogios’ study and learn more about the benefits of daily text-based surveys as a feasible and acceptable method for delivering medication adherence.
$30,000 in Innovative Research Grants
The Mattie Miracle Cancer Foundation funds innovative research grants through the American Psychosocial Oncology Society (APOS). The grants are designed to support the implementation of the Psychosocial Standards of Care for Children with Cancer and Their Families. These 15 evidence-based Psychosocial Standards of Care were published in Pediatric Blood & Cancer, in 2015. Mattie Miracle is committed to funding research that produces clinical tools and models that can enable the implementation of the Psychosocial Standards of Care at treatment sites around the country.
APOS is housing and administrating our grants and we are honored to be connected to this outstanding professional association. Twelve strong Letters of Intent (LOIs) were submitted and seven were invited to submit a full proposal. Each proposal was reviewed by three experts in the area of the proposal.
The following areas were scored:
Significance to psychosocial oncology and the implementation of the pediatric standards
Appropriateness of Methods
Qualifications of the investigator (research team) to conduct the study
Based on the above criteria, we wish to congratulate the recipients of a Mattie Miracle/APOS Early Investigator Award:
Stephanie Hullman, Ph.D. (Riley Hospital for Children, IN) is awarded $10,000 to conduct a research study entitled, SibCARE: A Comprehensive Psychosocial Support Program for Siblings of Youth with Cancer. Mentor: Meghan Marsac, Ph.D. and
Karen Long-Traynor, Ph.D. (Rutgers Cancer Institute, NJ) is awarded $10,000 to conduct a research study entitled, Feasibility of a peer-to-peer parent mentoring program for parents of children recently diagnosed with cancer. Mentor: Katie Devine, Ph.D., MPH
Based on the caliber of proposals submitted, Mattie Miracle selected an additional two research studies to fund at a lower level. We congratulate the Mattie Miracle grant awardees and are pleased that the studies address the Standards and the implementation of the Standards using the evidence-based Matrix and Guidelines.
Taylor Buss, MSW (Cleveland Clinic Foundation, OH) is awarded $5,000 to conduct a research study entitled, Integrating Psychosocial Standards of Care into the Electronic Medical Record: A Visual Management Tool. Mentors: Stefanie Thomas, MD and Kate Eshleman, Psy.D.
Christina Sharkey, Ph.D. (Children's National Hospital, Washington, DC) is awarded $5,000 to conduct a research study entitled, Integrated Supports for Interrelated Needs: Child and Caregiver Perspectives on Multidimensional Implementation of the Psychosocial Standards of Care. Mentors: Kristina Hardy, Ph.D.; Steven Hardy, Ph.D.; Eugene Hwang, MD; Katherine Patterson Kelly, Ph.D.; and Robert Noll, Ph.D.