History of Mattie Miracle Cancer Foundation Standards of care

HISTORY

How An Evidence-Based Standard of Care Was Created

The story behind the international, four year long project

THE STORY BEGINS

The Brown's cancer experience inspired them to voice a vision for there to be psychosocial standards of care, in which every child and family should receive an optimal level of psychosocial support regardless of where a child is treated.

After Mattie's death, they began advocating on Capitol Hill. Though staffers were supportive of the concerns addressed, the number one question posed at each visit was, "where's the data?" Meaning does the research support the need for psychosocial care and are there evidenced-based practices to assist children with cancer and their families?"

Mattie Miracle did not have answers to this question, but felt compelled and motivated to find them. In 2011, Mattie Miracle had the opportunity to connect with Brett Thompson, a lobbyist and now Partner at Banner Public Affairs. Brett worked with the Foundation on a pro-bono basis and convinced the co-founders that they should take a risk and hold the first ever Childhood Cancer Psychosocial Symposium at the Capitol Hill Visitor's Center.

The goal of this event was to provide the community and law makers with access to cutting edge psychosocial research and clinical practice delivered by a panel of psychosocial oncology experts. The Brown's invited key leaders in the field (Anne Kazak, Ph.D., Scientific Chair of the Symposium; Bob Noll, Ph.D., Andrea Farkas Patenaude Ph.D., Ken Tercyak, Ph.D., and Lori Wiener, Ph.D.), and asked parents whose children battled cancer to share their insights with participants.

The Symposium was filled to capacity with registrants representing 12 different States from across the Country. Mattie Miracle wanted to capitalize on the momentum from the Symposium on Capitol Hill and consulted with Dr. Lori Wiener and Dr. Anne Kazak on next steps. They encouraged Mattie Miracle to think broadly and to sponsor a psychosocial think tank where leaders in the field could brainstorm the creation of Standards for Care for children with cancer and their families.

The American Psychosocial Oncology Society, a National organization dedicated to psychosocial aspects of cancer care, invited Mattie Miracle to host the think tank at their 2013 annual conference. It was at this think tank that the Psychosocial Standards for Care Project was born.

THE GOAL

To develop evidence-based clinical standards for the psychosocial care of children with cancer and their families from the time of diagnosis through survivorship or end-of-life and bereavement care.

FIRST THINK TANK

The think tank was held on February 14, 2013. Dr. Lori Wiener spearheaded this effort.
The beauty of the think tank was its multi-disciplinary nature which included 20 psycho-oncology leaders from the U.S. and other international institutions.
The following fields were represented: social work, psychology, psychiatry, and nursing.
The following organizations were represented: Association of Pediatric Oncology Social Workers, Children’s Oncology Group (Behavioral Science Committee), International Society of Paediatric Oncology, International Psycho-Oncology Society, American Psychosocial Oncology Society, and parent advocates.
Reviewed all available published guidelines, recommendations, standards, and consulted with developers of adult psycho-oncology standards in preparation of the meeting.
As a result of the Think Tank, five working groups were formed (cognitive issues, neurocognitive, child and family psychotherapeutic interventions, screening and assessment, and staff and documentation) .

OUR CORE TEAM

Mattie Miracle is fortunate to be working with some of the leading researchers and clinicians in the world, and especially fortunate that five of them formed our core "Dream Team" for the standards project:

Mary Jo Kupst, Ph.D. - Read Bio...

Lori Wiener, Ph.D. - Read Bio...

Anne Kazak, Ph.D. - Read Bio...

Andrea Farkas Patenaude, Ph.D. - Read Bio...

Robert B. Noll, Ph.D. - Read Bio...

BETWEEN THE FIRST AND SECOND THINK TANK

Work group participants were comprised of:

24 Psychologists, 3 Psychiatrists, 7 Social Workers, 1 Nurse (Ph.D.), 6 Oncologists, 5 Parent Advocates, 1 Advanced Practice Nurse, 1 Child Life Specialist, 1 Chaplain, 1 Educator from the United States, Canada, and the Netherlands

Work groups were comprised of the following organizations:

American Academy of Child and Adolescent Psychiatry (AACAP)
American Psychological Association, Division 54 (Society of Pediatric Psychology)
American Psychosocial Oncology Society (APOS)
Association of Pediatric Hematology Oncology Educational Specialists (APHOES)
Association of Pediatric Hematology/Oncology Nurses (APHON)
Association of Pediatric Oncology Social Workers (APOSW)
Children’s Oncology Group (COG)
International Psycho-Oncology Society (IPOS)
International Society of Paediatric Oncology (SIOP)

Each work group had a monthly conference call. The first call started in February of 2013 and group work was just completed in July 2015.

The groups were comprised of think tank participants as well as additional members recruited by group leaders.
Groups followed a similar method for rigorous literature review, so that standards were evidence based.
Groups followed the Appraisal Guidelines for Research and Evaluation (AGREE II) for the creation of standards, so that the process was streamlined despite a division of the workload.

SECOND THINK TANK

The think tank was held on February 13, 2014. Dr. Lori Wiener spearheaded this effort.
Small working groups reviewed the created Standards, evidence summaries, rating forms, and conducted an additional review of a specific portion of the Standards that they were not involved in developing.
In addition to achieving consensus on the recommendations, think tank participants were asked to rate whether each recommendation should continue to be considered an essential standard.
Post think tank, the standards were further revised and GRADE (Guyatt et al., 2008) analysis for each Standard element by working group members was performed.

2015 APOS/IPOS WORLD CONGRESS

On July 31, 2015, Mattie Miracle and the core team of psychosocial professionals who have been instrumental at creating the Standards hosted a 90 minute Symposium at the International IPOS/APOS Conference.

The Symposium highlighted the developmental history of the Standards, the methodology used to generate the final 15 Standards, the evidence behind them, the struggles the team faced during the developmental phase, and the next steps toward mandating and implementation.

Watch a brief yet informative video summarizing the symposium, presented by ASCO POST featuring Andrea Patenaude, Ph.D, Director of Psychology research and Clinical Services, Dana-Farber Cancer Institute