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. 

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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).

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:

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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.  

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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. 

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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. 

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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. 

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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. 

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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. 

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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. 

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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. 

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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. 

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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.

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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:

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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). 

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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. 

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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. 

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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. 

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We are grateful to Mattie Miracle for their generous support of this study.

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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

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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

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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

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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:

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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. 

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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.

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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. 

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.

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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. 

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Click on Read More, to learn about this grant opportunity and how to apply. 

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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.

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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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

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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.  

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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:

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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.

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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.

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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.

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:

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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.  

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.

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.

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. 

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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.

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The following areas were scored:

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• 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

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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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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.

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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.

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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. 

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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.  

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A Message From Susan Burke (APHON President):

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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.