Managing childhood cancer and blood disorders – you don’t have to do it alone
Posted on October 15, 2019
Caring for a child with cancer or a serious blood disorder can be complex and stressful. Managing care may put additional strain on parents and caregivers, especially those with limited resources. These families face an array of financial and emotional stressors – from high medical bills to maintaining employment in the face of required work absences. The learning curve for navigating a complex treatment system is steep. As the primary advocate for their child, a parent or caregiver is faced with understanding not only their child’s illness – but deciphering an entirely new language of medical terminology.
The situation can become particularly stressful if the child requires specialty care from a hospital the family must travel to. Overcoming these obstacles takes time, an individualized approach and in-depth knowledge of available resources. Unfortunately, much of this work is poorly compensated by third party payers, if at all.
At Baystate Children’s Hospital, nurse practitioners assigned to these cases went above and beyond the scope of their work to ensure children were receiving the care they needed. To fill the void of crucial supportive roles these children and families need, the Childhood Hematology/Oncology Management Program (CHOMP) was formed.
Established in January of 2018, the CHOMP program is an integrative approach to improve education, access to care and compliance with treatment and psychological support of this small but vulnerable community. The majority of CHOMP’s work involves nurse practitioners performing necessary, but time consuming support and coordination of care. CHOMP strives to improve patient and family knowledge of home medications through face-to-face or phone review of medications. Written material is also provided, and used to assess family understanding using a “teach back” method.
To date, 96 children have benefited from the CHOMP program – which has produced measurable outcomes. Educational materials were personalized to align with a child’s treatment plan several times a year. Change was illustrated by a notable improvement in management of oral chemotherapy – with 25 med sheets used in 2019 (to date) compared to 147 med sheets used in 2018. The CHOMP nurse practitioners also led participation in the regional Make-A-Wish chapter with 100% of eligible patients referred versus 50% nationally.
Health New England understands the value the CHOMP program brings to our community and the families that they serve. That is why we are proud to be a contributing supporter of this program.
“We are grateful to Health New England for its support of the CHOMP program, which affords us the time and resources to support and coordinate the care of medically-complex, vulnerable children with cancer and blood disorders in this community,” said Matthew W. Richardson, MD, Chief, Pediatric Hematology/Oncology, Baystate Health. “This work is time-consuming and poorly reimbursed, but so important to the breadth and richness of ancillary support for these special children and their families. Our team is seeing the positive results and improved outcomes, which is a credit to Health New England’s commitment.”
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