Results
Between January 1, 2017 and October 10, 2018, 18 children and adolescents, 50% female, between the ages of 1.9-17.8 years (median 4.78 years) participated in SPRINT program. Majority of patients live >11 miles away from the facility, 38.9% with homes >50 miles away. All patients had generalized muscle weakness or deconditioning as a rehabilitation diagnosis, and 44.4% carried an additional diagnosis of peripheral neuropathy (Table 1). Leukemia, lymphoma, and CNS tumor consisted of the most common oncologic diagnoses for SPRINT participants, and 10 participants received chemotherapy while participating in SPRINT program (Table 2). During their hospitalization prior to SPRINT course, 16 patients experienced medical complications (Table 1), and 13 patients required ICU-level care, ranging 3-25 ICU days with an average of 10.6 days. Hospital LOS varied widely from 8 to 404 days, with a median of 68 days.
The change in PEDI caregiver assistance levels at the start and end of-SPRINT was significant in all tasks under Self-Care and Mobility domains (p = 0.001-0.048), demonstrating an overall reduction in assistance needs of participants after completion of SPRINT (Table 3). Functional expression was the only task under Social Function domain that reached significance (t(6) = -2.83, p = 0.030).
All 18 patients received PT and OT in SPRINT. Average number of PT sessions was 8.39 across SPRINT courses, which was 84% of planned PT sessions, with overall average of 377 minutes of total PT minutes. Average OT session number was 8.83, which was 88% of planned OT sessions with an average of 467 total OT minutes. Only 7 patients required ST as part of their SPRINT program, receiving an average of 7.14 sessions, which consisted of 88% of planned ST sessions for an average total of 306.43 minutes.
Regarding barriers to therapy participation as documented in therapy notes, either resulting in reduction of planned therapy minutes or cancellation of entire sessions, 71% consisted of patients’ symptoms or complaints (pain, fatigue, nausea or vomiting, general unwell feeling, being asleep, irritability, and poor participation), 22% of patient care (procedure, medication administration, care provider discussion, diaper change/bathroom use), and 7% of unexpected transfer to ICU or discharge from hospitalization before completion of the two-week SPRINT course.
No adverse events related to SPRINT participation were identified for all patients. At the end of hospitalizations after SPRINT completion, 9 patients were able to eventually discharge home, 6 patients transitioned to inpatient rehabilitation for additional intensive therapies, 2 were transferred to other acute care facilities closer to home, and 1 patient died after an extraordinarily prolonged hospitalization due to infection progression and neurologic deterioration with eventual withdrawal of care.
Only 11 parents and 4 patients completed both pre- and post-SPRINT questionnaires (Table 4). No significant difference between the pre- and post-SPRINT questionnaire responses was documented; however, trends toward reduced report of sadness by parent report and of tiredness by self report were appreciated.