RESEARCH
Expanding the Message to Include Psychosocial Care
Through Publications, Conferences, and Presentations
GRANTS
Supporting Innovation
February 14, 2023
On February 14, Mattie Miracle donated $42,000 to the American Psychosocial Oncology Society (APOS), to support our innovative psychosocial research grant program. The grants are designed to support the implementation of the Psychosocial Standards of Care for Children with Cancer and Their Families. 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 coordinates and administers our grants and we are honored to be connected to this outstanding professional association. Twelve strong Letters of Intent (LOIs) were submitted and six 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:
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Significance to psychosocial oncology and the implementation of the pediatric Standards
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Scientific Merit
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Innovation
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Appropriateness of Methods
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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 Research Grant:
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Christina Amaro, Ph.D. (Rutgers Cancer Institute, NJ) is awarded $10,000 to conduct a research study entitled, Community Engagement in Developing a Web-Based Single-Session Psychosocial Intervention for Adolescent Siblings of Youth with Cancer. Mentors: Melissa Alderfer, Ph.D. and Katie Devine, Ph.D., MPH
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Lydia Chevalier, Ph.D. (Dana-Farber Cancer Institute, MA) is awarded $10,000 to conduct a research study entitled, Developing Sexual Health Questionnaire for Young Adult Childhood Cancer Survivors: A Modified Delphi Project. Mentors: Sharon Bober, Ph.D. and Christopher Recklitis, 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 Implementation Grant recipients:
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Sherilynn Chan, Ph.D. (Seattle Children’s Hospital, WA) is awarded $7,500 to conduct a research study entitled, Telehealth Group Intervention for Adolescents and Young Adults with Cancer: A Feasibility Pilot Study. Mentors: Nancy Lau, Ph.D., Joanna Patten, Psy.D., and Abby Rosenberg, M.D.
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Kristen Uhl, Ph.D. (Dana-Farber Cancer Institute, MA) is awarded $7,500 to conduct a research study entitled, CAP CANCER: A Cognitive Behavioral Intervention for Pediatric Cancer-Related Pain. Mentors: Rachael Coakley, Ph.D. and Anna Muriel, M.D., MPH
Reflections from The American Psychosocial Oncology Society (APOS):
We are excited to announce that two 2023 APOS/Mattie Miracle Implementation Grants were selected for funding by an APOS scientific review committee. These two grants were chosen to move the field of pediatric psycho-oncology forward on the Implementation of the Pediatric Psychosocial Standards of Care.
In addition, two Mattie Miracle Implementation Grants were selected by the Foundation based upon the caliber of the proposals and the ability to provide additional deliverable outcomes. Such tangible research is vital toward the Mattie Miracle Cancer Foundation mission to implement the Psychosocial Standards of Care.
It is our pleasure to continue to partner with Mattie Miracle Cancer Foundation in our shared missions.
United to Improve Care
February 2023
Mattie Miracle announced in November of 2022, that The Andrew McDonough B+ Foundation awarded the Standards Research Team a $115,000 grant to pursue a large-scale implementation study of the Psychosocial Standards of Care. 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.
We are honored that Momcology has partnered with us to become an integral member of the Standards Research Team. Momcology is a national 501c3 committed to empowering and healing pediatric cancer families through the resource of peer support. Momcology's national platforms allow parents to connect with each other from anywhere and at any time of day. Their modern and accessible social media platforms enable parents to find important lines of support across the world with just a few keystrokes. Currently they connect over 200 families a month to their secure, moderated and guideline-based online support.
For the Psychosocial Standards of Care to become operationalized, the support of pediatric patients and their families is crucial. Having the opportunity to engage family caregivers in a meaningful discussion about the Psychosocial Standards of Care, seeking their feedback on the Standards, and identifying the importance of specific Standards, are necessary in order to successfully move towards the implementation of the Standards. Given Momcology's extensive membership network of family caregivers, their solid and trustworthy reputation within the childhood cancer community, and their commitment to evidence based psychosocial care, Mattie Miracle feels they are an asset to the implementation of the Psychosocial Standards of Care.
Reflections from Kim Buff
(Founder & Executive Director of Momcology):
Momcology is honored to be a new partner in the implementation process of The Standards of Psychosocial Care. For many years, Momcology has leaned on the guidance of The Standards in the creation and delivery of caregiver-based programs. Being tapped by the Mattie Miracle Cancer Foundation to be involved in this research process with the goal of making evidence-based psychosocial interventions more accessible to children and families is a responsibility we are enthusiastic and eager to pursue.
Momcology’s direct connection to patient families and our ancillary mission of utilizing the patient family experience to accelerate all aspects of research and care is a perfect fit for helping to identify the most urgent psychosocial needs families face and the opportunity to create sustainable solutions.
It is common practice to hear that those closest to the problem are often also closest to the solution. We look forward to engaging the full breadth of the Momcology community’s expertise and experience to analyze and innovate what true wrap-around care means for families facing childhood cancer.
Psychosocial support from the time of diagnosis is critical to the pediatric cancer care journey. Being a conduit to the caregiver community has taught us repeatedly that there is a great unmet need in ongoing and accessible psychosocial support for children and families. We believe a protocol in psychosocial wellbeing has the opportunity to be just as important in the trajectory of life after diagnosis as a medical one.
Vicki and Peter Brown, the co-founders of Mattie Miracle, have been thought leaders in psychosocial support for over a decade. We believe there is a great opportunity to access the patient family experience to influence research like never before. We are proud that Momcology’s community and network is now being valued in this important role in the ongoing advancement of knowledge and care.
The B+ Foundation gives us a lot to "be positive" about!
November 2022
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.”
Community Partner
March 2022
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:
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Alexandra Psihogios, Ph.D.; Children’s Hospital of Philadelphia, Pennsylvania
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Kimberly Canter, Ph.D.; Nemours Center for Healthcare Delivery Science, Delaware
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Kathryn Davis, M.A.; Boston University, Massachusetts
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Stephanie Hullmann, Ph.D., HSPP; Indiana University School of Medicine, Indiana
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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,
Enabling Innovation
March 2022
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!
Supporting Adherence
February 2022
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
October 2021
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
September 2021
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
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Scientific Merit
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Innovation
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Appropriateness of Methods
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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:
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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
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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.
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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.
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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.
Supporting Psychosocial Innovation
November 02, 2020
In 2018, Mattie Miracle created two psychosocial research grant programs. Our grants are coordinated through the American Psychosocial Oncology Society (APOS) and the Association of Hematology/Oncology Nurses (APHON). Both grant programs are designed to fund innovative research addressing the implementation of the 15 Psychosocial Standards of Care. These Standards were designed to guide the optimal level of psychosocial care provided to all children with cancer and their families.
To date, Mattie Miracle has awarded $67,000 in research grants, and has funded 12 studies. Many of these studies have resulted in research published in a peer reviewed journal as well as helped researchers qualify for National Institutes of Health Research Project grants (R01).
Research on Palliative Care
November 02, 2020
Mattie Miracle was proud to award Dr. Marie Barnett, at Memorial Sloan Kettering Cancer Center, a $5,000 psychosocial standards implementation grant. Here is what Dr. Barnett had to say about our support:
The care of children and adolescents with advanced cancer is complex and multifactorial. These patients and their families may experience highly distressing symptoms as they strive for optimal quality of life in the face of the increasing burden of illness. The palliative care psychosocial standard highlights two areas: Youth with cancer and their families should be introduced to palliative care concepts to reduce suffering throughout the disease process regardless of disease status, and when necessary, youth and families should receive developmentally appropriate end-of-life care.
With support from the Mattie Miracle Cancer Foundation, our research team at MSK aimed to establish and implement standardized, disease=specific eligibility criteria and clinical care recommendations for early introductions and referrals to the pediatric palliative care team for the sarcoma, neuroblastoma, and leukemia and lymphoma teams.
By asking care providers directly using a qualitative and iterative methodology (called the RAND-modified Delphi process), this project addressed traditional barriers for involving palliative care by establishing collaboratively developed and standardized recommendations specific to each oncology team for both introductions (defined as when the concepts and definition of palliative care are initially presented to a patient and their family by the primary medical team) and referrals (when an appointment is scheduled with the palliative care team) to pediatric palliative care.
Overall, providers endorsed that early introductions to palliative care are important and helpful, but there was disagreement or ambivalence (neutrality) on whether this should be standardized for both the introduction and actual referral. In following with palliative care philosophy that you meet the patient and family where they are, identifying a standardized process for introductions and referrals was not recommended or desired. Rather, providers recommended that these introductions and referrals be made in line with care teams' practices for referring to other treatment methods (e.g., physical and occupational therapy, psychiatry, nutrition), which are done in response to patients' needs as they arise.
There was agreement on specific clinical scenarios when introductions and referrals are highly appropriate. Notably, providers shared how helpful and important it can be to have palliative care providers managing and focusing on specific areas of palliative care (such as goals of care discussions, care coordination, complex pain control, and psychosocial support) while they remain focused on treating a patient's disease. Specific concepts that were most appropriate for palliative specialists to provide included anticipatory grief and bereavement, spiritual or existential support, meaning making and legacy building, and provider or team support.
Results from this study illuminate areas of discrepancy and at times contradictory views that providers hold on palliative care services and how they are incorporated into their oncology practice. Future directions will develop educational and training materials that harmonize the published Standards of Care with the providers' views demonstrated in this study. Implementation can include development of a screening tool for palliative care introductions that highlights the clinical scenarios described in this study for introductions, reducing both subjectivity regarding the appropriateness and discomfort for providers.
Additionally, providers felt they are moderately successful in demystifying the common perceptions that palliative care means that doctors have given up and that it is associated with death, dying, or hospice. Providers endorsed some emotional distress or discomfort when providing introductions and referrals to palliative care, as well as perceiving some level of distress or discomfort from colleagues. Training and education can target this with communication and knowledge building, role-playing, and supervision on what palliative care is and what it provides.
Future research, education, and program development should consider logistical and perceived barriers identified by providers. These barriers were disease-specific (e.g., many neuroblastoma patients are seen for a second opinion only when the introduction of palliative care may not be appropriate); included patient and family factors (e.g., families that associate a leukemia diagnosis with high cure rates are less prepared for palliative care conversations); were provider-specific (e.g., specific providers on a team are known for avoiding palliative care conversations); and system-specific (e.g., pediatric palliative care teams are short-staffed). These factors can all be addressed with a customized, multilevel approach that includes patient and provider education as well as adequate staffing.
Given that the unique nature and complexities of pediatric oncology vary by diagnosis and treatment team, more research is needed in streamlining and implementing comprehensive palliative care that is both patient-centered and addresses providers' concerns.
References:
Weaver, M.S., et al. (2015). Palliative care as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62 (suppl 5), S829-33.
Research on School Intervention
November 02, 2020
Mattie Miracle was proud to award Dr. Kathy Kirkpatrick, at Nationwide Children's Hospital in Columbus, Ohio, a $5,000 psychosocial standards implementation grant. Here is what Dr. Kirkpatrick had to say about our support:
School is a central part of every child's life, even when a diagnosis of pediatric cancer gets in the way. Psychosocial Standard #11 calls for school re-entry support for every school age patient newly diagnosed with pediatric cancer (Thompson et al., 2015). Given budgetary limitations experienced by most pediatric oncology centers and the fact that school liaison services are generally not reimbursable, it is important to use available staff in the most efficient way possible to serve as many patients as possible in the most appropriate way (Scialla et al., 2018).
The study "Evaluation of a tiered service model to support academic continuity and school re-entry for children with cancer" was designed to pilot and evaluate the efficacy of using the Brief School Needs Inventory (BSNI; Elam et al., 2019) to provide a level of service for each family commensurate with their needs. One aim of the study was to assess whether the BSNI could adequately identify patients at highest need of school intervention. Another aim was to assess the acceptability of a tiered service model - for both providers and families.
The study was designed for collection of data over two school years. For a broader assessment of the BSNI, we included both newly diagnosed patients and those who were attending their first long term survivorship clinic appointment. Data was gathered at enrollment and again a year later. During year one of the study, 50 students were enrolled. Enrollment for year two of the study was interrupted by the school closures related to COVID-19 in March 2020 with a total of 60 students in the cohort. Of the total patients enrolled, 40 were long term survivors and 70 were newly diagnosed. At the time of enrollment, 32 patients were assessed as low need, 49 as moderate need, and 29 as high need.
Follow up data will continue to be collected through late Spring 2021. We will review the satisfaction survey responses from providers and families to determine the acceptability of this model. We will also analyze the amount of time required per family (high vs. moderate vs. low risk) to assess the efficacy and reliability of the assessment tool for such a service model. After analysis of the data, we will submit the findings for publication and produce guidance for other medical centers wishing to establish such a model of care.
We are grateful to Mattie Miracle for their generous support of this study.
References:
Elam, M., Murphy, C., Irwin, M.K. (2019). Validity, reliability, and feasibility of the Brief School Needs Inventory: Evaluation educational risk for students with chronic health conditions. Psycho-Oncology, 28, 1483-1489. DOI: 10.1002/pon/5104
Scialla, M.A., Canter, K.S., Chen, F.F., Kolb, E.A., Sandler, E., Wiener, L., & Kazak, A.E. (2018). Delivery of care consistent with the psychosocial standards in pediatric cancer: Current practices in the United States. Pediatric Blood & Cancer, 65, e26869. DOI: 10.1002/pbc.26869
Thompson, A.L., Christiansen, H.L., Elam, M., Hoag, J., Irvin, M.K., Pao, M., Voll, M., Noll, R.B., & Kelly, K.P. (2015). Academic continuity and school reentry support as a Standard of Care in Pediatric Oncology. Pediatric Blood & Cancer, 65 (Suppl 5), S805-17. DOI: 10.1002/pbc.25760
Research on Bereavement
November 02, 2020
Mattie Miracle was proud to award Dr. Gillian Regan, at Levine Children's Hospital in Charlotte, NC, a $2,500 psychosocial standards implementation grant. Here is what Dr. Regan had to say about our support:
One of the 15 critical Psychosocial Standards of Care is specific to bereavement and emphasizes the importance of continued psychosocial support for families after the death of their child from cancer. At Levine Children's, we provide a monthly, online bereavement support group to families whose children were treated by our institution. The platform for this group is managed by a local community-based organization and we partner to provide this important support. The goal of the group is to provide ongoing bereavement support that helps to mitigate the psychosocial effects of losing a child to cancer, as research suggests that caregivers who have lost a child to cancer are at risk for poor mental and physical health outcomes.
With the generous support of the Mattie Miracle Cancer Foundation, we were able to gather information from some of the pre-existing and new members of our group to identify clinical characteristics and improve services provided. In addition, one of the main aims of this grant was to create a manual to assist with dissemination of this novel group.
Data collection is complete, and the manual is its final stages of preparation for dissemination to other pediatric institutions looking to provide similar online bereavement support. Our data have provided us with information about bereavement support provided through a social media platform, including recommendations for how to best support our families, as well as information about symptoms of prolonged grief present in our sample of bereaved caregivers. We look forward to continuing to provide this psychosocial service to our bereaved families and to increasing access to similar supports around the country as the manual is made available for dissemination.
Mattie Miracle Research Grants
October 01, 2020
Starting in 2018, Mattie Miracle created an Early Investigator Research Grant program in partnership with the American Psychosocial Oncology Society (APOS). To date, we have supported over $60,000 worth of innovative research through APOS.
Early investigators are invited to submit a letter of intention for our upcoming grant cycle. Two, $10,000 grants are available. Grants will be selected based on scientific merit determined by an APOS scientific review committee. In addition, other smaller grants will be offered by Mattie Miracle to applicants whose projects show great promise in developing a deliverable product and directly align with the Foundation's mission.
Click on Read More, to learn about this grant opportunity and how to apply.
Supporting Innovative Research
July 01, 2020
Mattie Miracle is proud to award Dr. Alex Psihogios, at the Children’s Hospital of Philadelphia, a $5,000 psychosocial standards implementation grant. Here is what Dr. Psihogios had to say about our support:
Childhood cancer treatment protocols are incredibly complex and require patients and their family members to manage several medications from home. Despite the critical importance of adherence for optimizing cancer outcomes, taking medications every day is difficult to achieve, especially for adolescents and young adults (AYA). The Adherence Standard states that “adherence should be assessed routinely and monitored throughout treatment”. However, our research and others have shown that there are many implementation challenges related to assessing adherence routinely in practice (e.g., lack of time and competing priorities).
Mobile technology, which is constantly consumed by AYA, represents a scalable approach for addressing this Standard-to-practice gap. With the support of the Mattie Miracle Cancer Foundation, we piloted assessing oral chemotherapy adherence via daily text messages in 18 AYA with acute lymphoblastic leukemia. Surveys were sent once per day, for 28 days, via a low-cost text message platform (Twilio/REDCap). In addition to assessing medication adherence, AYA completed brief surveys about other daily contexts relevant to their adherence (e.g., mood, physical symptoms, and where they were and who they were with during the dose).
Recruitment is closed and results are being prepared for a peer-reviewed manuscript. Findings will yield critical information about the utility of text message surveys for improving implementation of the Adherence Standard, as well as facilitating the identification of real-time adherence barriers. These findings may also have generalizable benefits to other pediatric cancer populations. In the next phase of our research, we are conducting a larger National Cancer Institute-funded study that will deliver daily adherence surveys via a gamified mobile app. In combination, these studies will support the development of a personalized mobile health intervention for assessing and improving adherence to life-saving pediatric cancer medications.
Supporting Implementation Research
March 13, 2020
On March 13, Mattie Miracle was scheduled to host a symposium at the American Psychosocial Oncology Society's 17th annual conference in Portland, OR. Unfortunately the conference was canceled because of the Coronavirus. The Foundation is committed to supporting implementation research for the Psychosocial Standards of Care for Children with Cancer and their Families and we are honored to support the following professionals:
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Dr. Kim Canter, Nemours Center for Healthcare Delivery Science, DE
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Dr. Kristin Long, Boston University, MA
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Dr. Alex Psihogious, Children's Hospital of Philadelphia, PA
These researchers have designed studies to address Standard 1 (Psychosocial Assessment), Standard 10 (Supporting Siblings), and Standard 12 (Medication Adherence) of the Psychosocial Standards of Care. For more information about these studies, please Read More below.
Continuation Grant Awarded
October 29, 2019
Mattie Miracle is proud to award Dr. Kristin Long, at Boston University, a $5,000 Continuation Grant. Here is what Dr. Long had to say about our support:
Childhood cancer affects all members of the family, including siblings. Although some siblings report positive adaptation to childhood cancer (e.g., family closeness, hopefulness, and maturity), many report strong negative emotions such as anger, worry, fear, sadness, guilt, and posttraumatic stress (Long et al., 2018). Many siblings feel disconnected from their families during cancer treatment and uninformed about their brother’s or sister’s diagnosis or treatment, which makes them feel left out and confused. Siblings also report high levels of unmet needs for social support and indicate needing help coping with cancer-related stressors (Patterson et al., 2011). The Standards for Psychosocial Care for Children with Cancer and their Families (Wiener et al., 2015) included a call for routine assessment and psychosocial support for siblings (Gerhardt et al., 2015). However, the Sibling Standard is among those least likely to be implemented (Scialla et al., 2018), with only one-third of centers consistently offering psychosocial care to siblings (Jones et al., 2018).
With the support from the Mattie Miracle Cancer Foundation, our research team aims to better understand and problem-solve barriers to offering psychosocial services to siblings. To this end, a national sample of psychosocial providers have shared their expertise regarding the amount and nature of psychosocial services provided to siblings, the factors that impede and facilitate implementation of the Sibling Standard, and ideas about how to overcome these barriers. We have learned that sibling-specific psychosocial screening and support are rarely achieved due to many barriers. For example, siblings are not routinely present at the hospital or clinic and therefore are disconnected from hospital-based services. Even when siblings are present, there are barriers regarding psychosocial providers’ availability, physical space in which to meet with siblings, procedures for documenting work with siblings (e.g., in the electronic medical record), and compensation for sibling work. Some centers offer written materials to educate families about common sibling needs or reactions. However, cancer-related stressors may limit the extent to which families can absorb these materials, and these educational materials remain inaccessible for families with limited literacy or English fluency. On a broader level, there remains limited awareness of siblings’ needs within hospitals and the larger medical community.
In response to our findings about barriers to meeting siblings’ needs, we have crafted a blueprint for siblings’ psychosocial services. The blueprint highlights the need for repeated sibling screening in the months or years after cancer diagnosis, emphasizes linkage to community-based sibling supports, and includes ideas that can be implemented with few resources. Currently, we are collecting feedback from psychosocial providers in order to revise the blueprint and increase its feasibility. This blueprint will serve as the basis for an application for future, larger-scale funding to assess the implementation of the blueprint in pediatric oncology settings. The ultimate goal of this research is to foster positive adaptation for all family members affected by childhood cancer, including siblings.
References
Gerhardt, C., Lehmann, V., Long, K., & Alderfer, A. (2015). Supporting siblings as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62, S678-S732.
Jones, B., Currin-Mcculloch, J., Pelletier, W., Sardi-Brown, V., Brown, P., & Wiener, L. (2018). Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers. Social Work in Health Care, 57, 221-249.
Long, K., Lehmann, V., Gerhardt, C., Carpenter, A., Marsland, A., & Alderfer, M. (2018). Psychosocial functioning and risk factors for siblings of children with cancer: An updated systematic review. Psychooncology. 27, 1467-1479.
Continuation Grant Awarded
October 01, 2019
Mattie Miracle is proud to award Dr. Kim Canter, at the Nemours Children's Health System in Delaware, a $10,000 Continuation Grant. Here is what Dr. Canter had to say about our support:
As a researcher, nothing is more important than the voices of patients and their families in terms of identifying and shaping research priorities. The Standards for Psychosocial Care for Children with Cancer and Their Families are a gold standard example of the amazing work that can develop when researchers, clinicians, and families come together behind a common cause. I am privileged to be the inaugural recipient of the Mattie Miracle Early Investigator Award, which supports my psychosocial research that aligns with Psychosocial Standard #6 (Standards of Psychosocial Care for Parents of Children With Cancer). Specifically, this grant supports my work on the Electronic Surviving Cancer Competently Intervention Program (eSCCIP), which is an online and telehealth psychosocial intervention for parents and caregivers of children with cancer.
eSCCIP is a three-session intervention focused on supporting parents and providing additional coping tools as they navigate their family’s experience with pediatric cancer. eSCCIP is designed to reduce distress and anxiety while improving overall family functioning. In order to overcome many challenges related to scheduling and time management, eSCCIP is intentionally flexible and can be completed anywhere with an internet connection. Generous support from the Mattie Miracle Cancer Foundation is currently funding a pilot test of eSCCIP in partnership with Inova Life with Cancer, a psychosocial center supporting families dealing with cancer in the D.C. metro area. Through this partnership, we are training social workers to become proficient in eSCCIP delivery, thus expanding the reach of this intervention program. The Mattie Miracle Cancer Foundation is also providing additional funding to test a Spanish-language adaptation of eSCCIP, filling a critical gap in the field by providing psychosocial support to parents who are not proficient in English. This support is critical in terms of being competitive for a large research grant from the National Cancer Institute, which will allow our team to run a randomized clinical trial of eSCCIP. This will be the “final step” in obtaining gold standard evidence that eSCCIP is an effective intervention, providing critical psychosocial care in line with the standards and connecting the dots between science and clinical care.
Focus Group & Plenary held at National Conference
April 10, 2019
Mattie Miracle helped to both run a focus group and deliver a plenary at the Association of Pediatric Oncology Social Workers conference in Phoenix, AZ. There were 20 focus group participants comprised of pediatric social workers who work at cancer treatment sites from around the Country. The focus group participants did significant pre-conference work, in which they evaluated the newly created Matrix and Guidelines for the Psychosocial Standards of Care for Children with Cancer and their Families. The Matrix provides a scoring system for treatment sites to assess their current implementation of each of the Standards. Whereas the guidelines provide a road map to help sites obtain a higher score on the Matrix and thereby provide the optimal psychosocial care children with cancer and their families deserve.
The two hour plenary was attended by 200 conference members. Within this session we highlighted the history behind the Psychosocial Standards project. Then two studies which examined implementation of the Standards within pediatric oncology settings were reviewed. The Matrix and Guidelines were unveiled and future directions and plans for the Psychosocial Standards of Care project were discussed.
Research Symposium held at National Conference
March 01, 2019
Mattie Miracle funded a research Symposium entitled, Pediatric Psychosocial Standards of Care: A Review and Discussion of In-Progress Research Projects on Implementation of the Standards at the 16th annual American Psychosocial Oncology Society Conference in Atlanta, GA.
In 2015, the Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC)—a large interdisciplinary group of expert stakeholders, published 15 evidence-based standards for pediatric psychosocial care. The Standards provide a blueprint on what evidence-based care should consist of at treatment sites.
This year, Mattie Miracle partnered with APOS to provide funding to help support researchers who design high quality studies that aim to help implement any of the 15 pediatric Standards. The Symposium, highlighted Mattie Miracle's funded research projects addressing novel interventions for caregivers, adherence, integration of palliative care, sibling support, school re-entry, and parental bereavement.
$33,700 in Implementation Grants
September 04, 2018
The Mattie Miracle Cancer Foundation is partnering with the American Psychosocial Oncology Society (APOS) on a new initiative. The funding of research grants 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. Twenty-six strong Letters of Intent (LOIs) were submitted and 12 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:
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Significance to psychosocial oncology and the implementation of the pediatric standards
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Scientific Merit
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Innovation
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Appropriateness of Methods
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Qualifications of the investigator (research team) to conduct the study
Based on the above criteria, we wish to congratulate Kimberly Canter, Ph.D. (Nemours Center for Healthcare Delivery Science, DE) for becoming the first recipient of the Mattie Miracle/APOS Early Investigator Award. Dr. Canter is awarded $10,000 to conduct a research study entitled, Community Implementation of a Psychosocial eHealth Intervention for Parents of Children with Cancer. Mentor: Anne Kazak, Ph.D., ABPP
Our intention was to fund one grant, however, based on the caliber of proposals submitted, Mattie Miracle selected an additional 5 research studies to fund at a lower level. We congratulate the five Mattie Miracle Grant awardees and are pleased that each of these studies address a different Psychosocial Standard of Care.
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Marie Barnett, Ph.D. (Memorial Sloan Kettering Cancer Center, NY) Study: Team-based Integration of Palliative Care in Pediatric Oncology Practice: Implementing the Pediatric Psychosocial Standards of Care. ($5,000) Mentor: Julia Kearney, MD
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Kathryn Kirkpatrick, Ph.D. (Nationwide Children's Hospital, OH) Study: Evaluation of a tiered service model to support academic continuity and school re-entry for children with cancer. ($5,000) Mentors: Kathryn Vannatta, Ph.D. & Tammi Young-Saleme, Ph.D.
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Kristin Long, Ph.D. (Boston University, MA) Study: On the Outside Looking In: A Nationwide Examination of Barriers to and Facilitators of Implementing the Standard of Psychosocial Care for Siblings of Children with Cancer. ($5,000) Mentor: Melissa Alderfer, Ph.D.
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Alexandra Psihogios, Ph.D. (The Children's Hospital of Philadelphia, PA) Study: Real-time Medication Adherence Assessments among Adolescents and Young Adults with Leukemia. ($5,000) Mentors: Lamia Barakat, Ph.D. & Lisa Schwartz, Ph.D.
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Gillian Regan, Ph.D. (Levine Children's Hospital, NC) Study: Life after death: A novel on-line support group for parents who have lost a child to cancer. ($1,257) Mentor: Amii Steele, Ph.D.
$10,000 to Support An Early Investigator Research Grant
March 23, 2018
Mattie Miracle is honored to partner with the American Psychosocial Oncology Society (APOS) by annually funding an Early Investigator Research grant. This grant will help to support the implementation of the Psychosocial Standards of Care for Children with Cancer and Their Families. APOS was formed in 1986 to bring together professionals working in the psychological, behavioral and social aspects of cancer. Its mission broadened in the early 2000's to network professionals from all disciplines working in psychosocial oncology: nurses, social workers, psychologists, counselors, clergy and psychiatrists.
APOS is the professional association which invited Mattie Miracle to host both of its think tanks at their annual conferences, think tanks that were instrumental to the creation of the Standards of Care. APOS is also a professional endorser of the Psychosocial Standards of Care.
$10,000 to Support Evidence Based Practice Grants
January 22, 2018
Mattie Miracle is honored to partner with the Association of Pediatric Hematology/Oncology Nurses (APHON) by annually funding three $2,500 Evidence Based Practice grants. These grants will help to support the implementation of the Psychosocial Standards of Care for Children with Cancer and Their Families. APHON is a professional association dedicated to promoting optimal nursing care for children, adolescents, and young adults with cancer and blood disorders, and their families.
APHON was the first professional organization to endorse the Psychosocial Standards of Care and we are pleased that they are committed to our mission of implementing the Standards at treatment centers around the Country. The implementation of Standards would ensure that all children with cancer and their families have access to optimal psychosocial care.
A Message From Susan Burke (APHON President):
The universal understanding that treatment of childhood cancer involves more than just medicine provides us with opportunities to improve and enhance the quality of life for children with cancer and their families. The development of these Standards provides the necessary framework for establishing psychosocial interventions and sets the stage for future research initiatives.
APHON would like to express their appreciation to the Mattie Miracle Cancer Foundation for providing grant funding to support the implementation of selected psychosocial Standards at the institutional level. They are a true partner in our continued advancement towards excellence in the psychosocial care of children and adolescents with cancer.
PUBLICATIONS
Sarcoma: A Multidisciplinary Approach To Treatment
May 31, 2017
Mattie Miracle was invited to contribute a psychosocial chapter to a leading medical textbook designed to address a multidisciplinary approach to Sarcoma treatment. The chapter is entitled, Psychosocial Issues in Children with Cancer: The Role of Patient Advocacy and Its Impact on Care.
Abstract:
When a child is diagnosed with cancer, life as the family once knew it ceases to exist. Families are faced with their greatest fear. Childhood cancer is a family disease that impacts the psychological, social, and emotional health of the entire family system. Providing psychosocial care for the child and the family throughout the cancer trajectory, from the time of diagnosis through survivorship or end-of-life care, is vital to achieving optimal health and wellness. This chapter highlights the importance of psychosocial care, discusses the role and strategies of patient advocacy with the impact parents can have on the effectiveness of medical care, and reviews the National project that is underway to develop and implement standards of psychosocial care for childhood cancer. The perspective of parents and psycho-oncology professionals are incorporated in this chapter and together they give voice to Mattie's courageous battle against osteosarcoma.
Pediatric Psychosocial Oncology: Textbook For Multidisciplinary Care
November 16, 2015
Mattie Miracle was invited to contribute a chapter to a leading psychosocial oncology textbook. The chapter is entitled, Parents' perspective on the role of psychosocial care: Conversations and approaches.
Abstract:
When a child is diagnosed with cancer, the lives of an entire family are changed forever. In an instant, the vision of your perfectly healthy and happy family and the future you envisioned gets wiped away and is replaced with foreign medical jargon, treatment protocols, and great fear and anxiety about the survival of your child. Providing psychosocial care for the child and the family along the cancer continuum, from the time of diagnosis through survivorship or end-of-life care, is vital to achieving optimal health and wellness. This chapter highlights the importance of psychosocial care for childhood cancer families and the perspectives of two parents who have lived the cancer journey as they cared for their son Mattie, who courageously battled osteosarcoma. As a result of their experiences, they share their conversations and approaches with psychosocial providers and also discuss their vision that inspired the national project that is underway to develop standards of psychosocial care for childhood cancer.
IOM Report on Comprehensive Cancer Care for Children and Families Mentions Mattie Miracle and Calls for Psychosocial Support
July 20, 2015
The Institute of Medicine report on Comprehensive Cancer Care for Children and Their Families (July 2015) profiles Mattie Miracle's Co-Founder Victoria Sardi-Brown and covers extensively the need for psychosocial support for children with cancer. Read the full report by clicking the Read More link.
CONFERENCE PRESENTATIONS
Implementing Psychosocial Standards of Care
October 12, 2017
Panel presentation at the 49th Congress of International Society of Paediatric Oncology, Washington, DC.
Brown, P., Kazak, A., Kupst, M., Patenaude, A., Sardi-Brown, V., & Wiener, L.
Pediatric Psychosocial Standards of Care: Development, Implementation, and Future Directions Plenary
February 17, 2017
Plenary at the American Psychosocial Oncology Society Annual Conference, Orlando, FL.
Brown, P., Patenaude, A., Sardi-Brown, V., & Wiener, L.
Psychosocial Standards of Care for Children with Cancer and Their Families
January 19, 2017
Panel Presentation at National Institutes of Health, Bethesda, MD.
Authors: Brown, P., Kazak, A., Sardi-Brown, V. & Wiener, L.
Psychosocial care for children with cancer and their families.
June 23, 2016
Panel presentation at the Coalition Against Childhood Cancer Summit and Annual Meeting, Philadelphia, PA.
Brown, P., Barakat, L., Kazak, A. Keeler, C., Rector, R., & Sardi-Brown, V.
Psychosocial Standards of Care for Children with Cancer and Their Families.
April 16, 2016
Professional presentation at the Association of Pediatric Oncology Social Workers (APOSW) Conference, Providence, RI.
Brown, P., Jones, B., Pelletier, W., Sardi-Brown, V.A., & Wiener, L.
When tragedy inspires hope: The development of the National Psychosocial Standards of Care for Childhood Cancer
November 14, 2015
Plenary at the Florida Association of Pediatric Tumor Programs (FAPTP), St. Pete Beach, FL.
Brown, P., Sardi-Brown, V.A.
The Development of Childhood Cancer Psychosocial Clinical Care Standards
July 31, 2015
Symposium presentation at the IPOS/APOS World Congress, Washington, DC.
Brown, P., Kazak, A., Kupst, M. J., Noll, B., Patenaude, A., Sardi-Brown, V.A., & Wiener, L.
When tragedy inspires hope: The development of a National psychosocial standard of care for childhood cancer.
May 08, 2015
Keynote presentation at the Association of Pediatric Hematology/Oncology Nurses, Metro New York, Long Island & New Jersey Chapters, (APHON), Manhattan, NY.
Brown, P., Sardi-Brown, V.A.
Establishing psychosocial standards of care for childhood cancer
March 13, 2015
Poster presentation at the National Comprehensive Cancer Network Conference, Hollywood, FL.
Brown, P., Sardi-Brown, V.A.
Sharing a parent perspective. Presentation at the IOM Meeting: Comprehensive cancer care for children and their families,
March 08, 2015
Institute of Medicine Workshop on Comprehensive Cancer Care for Children with Cancer, National Academy of Sciences, Washington, DC.
Brown, P., Sardi-Brown, V.A.
When tragedy inspires hope: A parents' call to action to create a psychosocial standard of care for childhood cancer
October 25, 2014
Presentation at the International Society of Paediatric Oncology (SIOP), Toronto, Canada.
Sardi-Brown, V.A., and Brown, P.
Quality of life guides the development of the National psychosocial standard of care for childhood cancer
October 25, 2014
Presentation at the International Society of Paediatric Oncology (SIOP), Toronto, Canada.
Sardi-Brown, V.A., and Brown, P.
The journey toward a National psychosocial standard of care for childhood cancer
June 20, 2014
Keynote address at the Ohio Department of Health Conference, Columbus, OH.
Sardi-Brown, V.A., and Brown, P.
When tragedy inspires hope: The development of a national psychosocial standard of care for childhood cancer
May 01, 2014
Keynote address at the Association of Pediatric Hematology Oncology Educational Specialists (APHOES) Conference, Columbus, OH.
Sardi-Brown, V.A., and Brown, P.
Establishing pediatric psychosocial standards of care
May 01, 2014
Poster session at the Association of Pediatric Hematology Oncology Educational Specialists (APHOES) Conference, Columbus, OH.
Sardi-Brown, V.A., and Brown, P.
Second Mattie Miracle Childhood Cancer Psychosocial Think Tank
February 14, 2014
American Psychosocial Oncology Society Conference, Tampa, FL.
Sardi-Brown, V.A., and Brown, P.
First Mattie Miracle Childhood Cancer Psychosocial Think Tank
February 14, 2013
American Psychosocial Oncology Society Conference, Huntington Beach, CA.
Sardi-Brown, V.A., and Brown, P.
Mattie Miracle Childhood Cancer Congressional Psychosocial Symposium
March 20, 2012
Capital Hill Visitors Center, Capital Hill, Washington, DC.
Sardi-Brown, V.A., and Brown, P.