How Pediatric Outcomes Research Can Impact Patient Care: The CARES Study
The Children's Outcomes Research (COR) Program is partially funded by the Research Institute at Children's Hospital Colorado. Its mission is to improve child health, both locally and nationally, by conducting state-of-the-art pediatric outcomes research that can be translated into clinical practice and child health policy. The COR Program, with Allison Kempe, MD, as Director, has extensive experience investigating pediatric health outcomes using both quantitative and qualitative methodologies.
In 2008, COR researchers were asked to help several of the musculoskeletal surgeons and the coordinating spine nurse to evaluate their Care Pathway for Spinal Surgery (CAPSS) Care program. This clinical program is designed to manage children with scoliosis caused by neuromuscular or central nervous system disorders who are undergoing spinal fusion surgery. These high-risk patients are challenging surgical cases due to comorbidities and higher perioperative complication rates than idiopathic scoliosis patients. The CAPSS Care program includes the coordination of multiple subspecialty evaluations (pulmonologists, cardiologists, gastroenterology, neurology, nutrition, respiratory therapy, physical therapy) and both preoperative and discharge planning with the spinal nurse coordinator and social work staff.
We conducted a program evaluation from the perspective of both the clinical and surgical team and family caregivers to better understand what parts of the program were effective, what parts needed improvement and what the impact of the surgery and the Care Pathway were on families and children undergoing the procedure. This evaluation was called Caregivers' and Relatives' Expectations for Spinal Surgery (CARES) Study. As part of our evaluation we completed 30 structured in-depth interviews with 14 program clinical and surgical team members (pediatric orthopedic surgeons, spine nurses, physical and respiratory therapists and the program social worker, dietician and scheduler) and 16 family caregivers of children with neuromuscular-caused scoliosis who had program evaluations and spinal fusion surgeries in 2006.
Our results showed that from the perspective of both clinical and surgical providers and family caregivers, the program was effective in improving pre-operative surgical evaluation, informing families regarding the surgical experience and aiding in hospital discharge for challenging cases. Although outcomes related to program effectiveness in the hospital were very positive, our data also clearly demonstrated the profound emotional impact of spinal fusion surgery on patients and family caregivers. The strong emotional impact on the child and family was related to pre-operative testing, the surgery itself and demands upon the family caregiver of post-operative home-based care giving. Our research suggested that the program providers underestimated the extent of emotional trauma experienced by patients and families with this surgery and recovery process. Additional issues identified for many families once discharged to home included the need for more social support services, visiting home nurses and equipment.
Our results were presented to the CAPSS providers and to key nursing and social work staff. As a result of the CARES study, the CAPSS Program team has instituted changes to improve patient care in areas identified as deficient by the CARES data. These have included all of the following:
- An in-home social work visit immediately following the hospital discharge to assess social, medical and equipment needs.
- Phone follow-up by the spine nurse one week after discharge.
- Increased involvement of the psychology department in evaluating families before surgery to anticipate problems that might arise during and after surgery.
- Increased availability of psychological services after surgery and after discharge to help the child and family cope with the significant trauma of surgery.
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