UPDATES

Continual Progress Towards Implementation

A distinguished team of domain experts works toward ensuring that children with cancer and their families have access to psychosocial care throughout the cancer trajectory

FOCUS ON IMPLEMENTATION

A multi-discplined core leadership team has been assembled to work on the impementation phase of the Psychosocial Standards of Care for Children with Cancer and their Families project,

 

The core team represents many 

healthcare professional organizations and institutions from around the Country and Canada, and is united around the vision that all children with cancer and their families receive an optimal standard of psychosocial care from the date of diagnosis, through survivorship, or end of life and bereavement care.

 

Pictured to the right are:

Top Row (L to R):

Lori Wiener, Ph.D., DCSW (Co-Director, Behavioral Health Core; Head, Psychosocial Support and Research Program, National Cancer Institute)

Mary Jo Kupst, Ph.D. (Professor Emerita of Pediatrics, Medical College of Wisconsin)

Anne Kazak, Ph.D., ABPP (Co-Director of the Nemours Center for Healthcare Delivery Science)

Wendy Pelletier, MSW (Social Worker at Alberta Children's Hospital)

Bottom Row (L to R):

Robert Noll, Ph.D. (Professor of Pediatrics, University of Pittsburgh School of Medicine)

Nina Muriel, MD (Chief, Division of Pediatric Psychosocial Oncology Senior Physician at Dana Farber Cancer Institute)

Katherine Kelly, Ph.D., RN (Nurse Scientist, Department of Nursing Research and Quality Outcomes, Children's National Health System)

Pamela Hinds, Ph.D., RN, FAAN (Associate Center Director, Center for Translational Science; Director, Nursing Research and Quality Outcomes, Children's National Health System)

Not Pictured:

Andrea Patenaude, Ph.D. (Dana-Farber Cancer Institute) ** Legacy Member

Victoria Sardi-Brown, Ph.D. (Co-Founder, President Mattie Miracle Cancer Foundation)

Peter J. Brown, MBA (Co-Founder, CEO, Mattie Miracle Cancer Foundation)

RECENT ACTIVITIES

Most Downloaded Publication

October 2019

In 2015, Mattie Miracle funded the publication of the Psychosocial Standards of Care for Children with Cancer and Their Families in a supplemental issue of Pediatric Blood & Cancer. The Foundation is proud to report that the Standards are the most downloaded publication in this journal over the past five years. The Standards were designed to ensure that all children with cancer and their families have access to optimal psychosocial care from the time of diagnosis, throughout treatment, into survivorship or end of life and bereavement care. Since the Foundation is committed to evidence based psychosocial research and care, it paid for on-line open access to the Standards. 

Pediatric Blood & Cancer publishes the highest quality manuscripts describing basic and clinical investigations of blood disorders and malignant diseases of childhood including diagnosis, treatment, epidemiology, etiology, biology, and molecular and clinical genetics of these diseases. It is the official journal of The American Society of Pediatric Hematology/Oncology and The International Society of Paediatric Oncology. Dr. Peter Newburger, the Editor-in-Chief of Pediatric Blood & Cancer, had this to say about the Psychosocial Standards of Care: 

Pediatric Blood & Cancer, the leading journal in the field of pediatric oncology, reports that the Psychosocial Standards of Care for Children with Cancer and Their Families is its most frequently downloaded publication since 2015. This demonstrates the immense value and strength of the evidence-based Standards in terms of their robustness of content and utility for clinicians. It also signals that the clinical, research, and advocacy communities are pursuing and embracing the scientific rigor that guide psychosocial interventions and care.

The Standards were designed to ensure that all children with cancer and their families have access to optimal psychosocial care from the time of diagnosis, throughout treatment, into survivorship or end of life and bereavement care. As psychosocial care is a vital part of comprehensive cancer care. PBC commends the vast number of healthcare providers who worked tirelessly to develop the Standards of Care and to the co-founders of Mattie Miracle who turned the tragedy of the death of their son, Mattie, into his legacy that will help countless children with cancer and their families. PBC is honored to be the publication home of the Psychosocial Standards of Care.

Implementation of the Psychosocial Standards of Care

September 2019

Spencer Moorman, MSSW, CSW, was hired as the first full time Pediatric Hematology/Oncology Social Worker at The University of Louisville Physicians Pediatric Cancer and Blood Disorders/Norton Children’s Hospital, in 2015. Without a previously established psychosocial path to emulate and the overwhelming responsibility of every oncology and bleeding disorder patient under her umbrella, Spencer began tallying the various topics, issues, and concerns encountered in daily practice in an effort to identify the resources, assessments, and foundational support needed to help fill gaps in patient care. When she stumbled upon the Standards of Care in early 2016, they immediately provided her an invaluable template from which to work from in categorizing topics, organizational resources, talking points, interventions, and to access baseline psychosocial care delivery. Their establishment motivated Spencer to create a psychosocial road map and tracking tool complete with individualized checklists pertinent to each standard in an effort to promote proactive psychosocial support, operationalized care across the board, and clearly defined expectations for families.
 
The Standards also provided Spencer with the evidence-based artillery needed to advocate for increased support at her institution in order to improve psychosocial standard of care execution and holistic wellness for children and families impacted by childhood cancer. Thanks to Mattie Miracle’s mission and the gift of these game changing Standards, two additional full-time social workers have recently joined forces with Spencer while the continued building of a comprehensive psychosocial program remains a priority at her center amidst the exciting integration of healthcare institutions. Spencer recognizes Mattie’s legacy and the strength of these crucial Standards in helping to make rapid growth, progress, and ever widening awareness that “It’s not just about the medicine” possible. 

A New Addition to the Psychosocial Standards Core Team

July 2019

Mattie Miracle has a long standing connection with Wendy Pelletier (MSW, social worker at Alberta Children's Hospital in Canada).  We met Wendy in 2013, at a think tank we hosted at the American Psychosocial Oncology Society Conference in Huntington Beach, CA.  Instantaneously we felt connected to her as it is very clear Wendy understands the true psychosocial impact of a childhood cancer diagnosis on families, and brings great empathy and compassion to her work with bereaved parents. 

 

Wendy authored two of the 15 Psychosocial Standards of Care that were published in Pediatric Blood and Cancer in 2015, and has been an integral part of the Standards research project for over seven years.  Given Wendy's extensive work and commitment to the implementation of the Standards, we are thrilled Wendy has accepted to officially become a member of the Core Research Team.  The Core Research Team is affectionately called the "rain makers" by Mattie Miracle.  Since this distinguished group of professionals uses scientific means to define, shape, and enhance the quality of psychosocial care provided to children with cancer and their families.

Mattie Miracle Psychosocial Implementation Policy Roundtable

January 24, 2017

Mattie Miracle hosted a Psychosocial Implementation Roundtable on Capitol Hill. The Roundtable represented a historic step that united researchers, payers, legislators, and cancer advocates together to brainstorm strategies to implement the Psychosocial Standards of Care for Children with Cancer and their Families at treatment sites across the Country. Implementing these Standards will ensure that children with cancer and their families have access to quality psychosocial care from the time of diagnosis, throughout treatment, into survivorship or end of life and bereavement care. Even if we achieve a 100% medical cure rate for all childhood cancers, children and families will still have to cope and live with the damaging psychological, social, and emotional impacts of living through the cancer experience.

​​​

Five years ago, Mattie Miracle hosted the first ever Psychosocial Symposium for Childhood Cancer on Capitol Hill. At that event, we shared our vision for the establishment of evidence based psychosocial standards of care. Thanks to an incredibly talented and dedicated team of psychosocial researchers, the Standards were published in a special issue of Pediatric Blood & Cancer in December of 2015.

​​

There were 30 invited participants to the Roundtable and the day was divided into six topical areas (Outcomes, Legislative/Policy, Resourcing, Reimbursement, Accreditation, and Delivery Models). Each topical area was introduced by a professional speaker and then questions were posed to the entire group of participants to discuss and develop strategies.

Mattie Miracle Legislative Champions

January 24, 2017

Mattie Miracle is deeply grateful to Senator Van Hollen and Representatives McCaul and Speier for their continued leadership to give childhood cancer a voice on Capitol Hill. We thank them for their encouragement to host the Psychosocial Roundtable at the Cannon Office Building. The Roundtable's presence on the Hill signals continued Congressional interest in the Standards of Care and the understanding that childhood cancer is not just about the medicine.

Mattie Miracle was honored to award a Childhood Cancer Psychosocial Champion plaque to Senator Van Hollen, Rep. McCaul, and Rep. Speier as they continue to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care.

Mattie Miracle Psychosocial Roundtable Co-Sponsors

January 24, 2017

Mattie Miracle was fortunate to have the American Cancer Society, the American Cancer Society Cancer Action Network, and Dominion Consulting co-sponsor the Roundtable. We value their participation, support, and commitment to the implementation of the Psychosocial Standards of Care. 

Strategic Planning Meeting with the Core Leadership Team

July 21, 2016

The three year long international project to develop evidence based psychosocial standards of care for children with cancer and their families ended on December 29, 2015, when the Standards were published in a dedicated supplement of Pediatric Blood & Cancer.  The project, involved 85 health care professionals from 44 institutions across the U.S., Canada, and the Netherlands.  The project resulted in the largest and most comprehensive compilation of psychosocial standards to date in which 1,217 journal articles were reviewed and appraised for rigor.  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.  

On July 21, 2016, the core leadership team for the implementation phase of the Standards project convened in Washington, DC for a day long strategic planning meeting. The team brainstormed goals, objectives, and targeted activities necessary to operationalize the standards from theory into practice.  The team understands a multi-proned approach that addresses legislation, payors, training programs, and institutional accreditation will be necessary to integrate standardized psychosocial care into overall comprehensive cancer care. 

New Members to the Core Leadership Team

July 21, 2016

The Core Leadership Team of the Psychosocial Standards of Care Project gained two new members, Dr. Pamela Hind (Children's National Health System) and Dr. Nina Muriel (Dana Farber Cancer Institute). Psychosocial care is provided by a multitude of professionals and as such this diversity is reflected in the project's leadership. Here is what Dr. Hinds and Dr. Muriel had to say about joining the Team:

Dr. Hinds stated, "I find the work with this team to be inspirational - the work is focused and at the same time very visionary. I believe that having both of these elements in operation at the same time is almost impossible - and yet it is very present with this work."

 

Dr. Muriel stated, “I am very excited to join with Mattie Miracle and this team of pediatric psycho-oncology leaders as they plan for next steps in disseminating the Standards of Psychosocial Care for Children with Cancer and their Families. The vision and commitment of the group is incredibly inspiring as we look forward to a time when pediatric oncology care routinely implements the compassionate and skillful psychosocial care that every child and family deserves.”

Children's Oncology Group (COG) Supportive Statement

July 5, 2016

Dr. Peter Adamson, Chairman of the Children's Oncology Group (COG), released a declarative statement providing COG's support for the Psychosocial Standards of Care for Children With Cancer And Their Families.  Dr. Adamson's endorsement of the project and its efforts to document and provide a framework for psychosocial standards of care will help the COG in focusing future research efforts to enhance the services that are essential for comprehensive psychosocial care for children and their families.  Click the "Read" button below to view the official statement.

APHOES Endorses Psychosocial Standards of Care

April 1, 2016

Mattie Miracle values its long-standing connection with the Association of Pediatric Hematology Oncology Educational Specialists (APHOES).  APHOES is comprised of a group of professionals who tirelessly advocate to address the educational needs of children with cancer.  We are proud that standard #11 addresses these educational issues and supportive needs.   

Mary Kay Irwin, EdD, Chair of APHOES and Megan Elam, EdD, Chair of the APHOES Legislative Committee represented the educational expertise in this important project.  Irwin and Elam were both invited authors and collaborated with other multidisciplinary psychosocial experts in the development of the "Academic Continuity and School Reentry Support" Standard of Care.  Click the "Read" button below to learn more. 

Please reload

© 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