RESEARCH

Expanding the Message to Include Psychosocial Care

Through Publications, Conferences, and Presentations 

GRANTS

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:

  1. Dr. Kim Canter, Nemours Center for Healthcare Delivery Science, DE

  2. Dr. Kristin Long, Boston University, MA

  3. 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:

  • Significance to psychosocial oncology and the implementation of the pediatric standards

  • Scientific Merit

  • Innovation

  • Appropriateness of Methods

  • 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 CancerMentor: 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. 

  1. 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

  2. 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.

  3. 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.

  4. A​lexandra 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.

  5. 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.  

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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.

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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.

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© 2019  MATTIE MIRACLE CANCER FOUNDATION.  ALL RIGHTS RESERVED.

Mattie Miracle Cancer Foundation

P.O. Box 6485
Arlington, VA. 22206-0485

A 501(c)3 Public Charity

EIN: 27-1238358