Background: We previously developed a mobile health (mHealth) app (Roadmap) to promote the resilience of family caregivers during the acute phases of care in patients undergoing hematopoietic cell transplantation (HCT).
Objective: This study explored users’ perspectives on the uptake of Roadmap’s multi-component features and the app’s utility in promoting resilience.
Methods: Fifteen participants were randomized to the full version of the app that included resilience-building activities and the other 15 were randomized to the control version that included a limited view of the app (i.e., without any resilience-building activities). They were instructed to use the app for 120 days. Semi-structured qualitative interviews were then conducted with users as part of an ongoing, larger Roadmap study (NCT04094844). During the interview, caregiver participants were asked about their overall experiences with the app, frequency of use, features used, facilitators and barriers of use, and their perspectives on its utility in promoting resilience. Data were professionally transcribed, coded, and categorized through content analysis.
Results: Interviews were conducted with thirty participants, which included 23 females and 7 males. The median age of the population was 58 years (range, 23–82). The four main themes that emerged included app use, ease-of-use, user experiences, and ability to foster resilience. The sub-themes identified related to facilitators (convenience and not harmful); barriers (caregiver burden and being too overwhelmed during the acute phases of HCT care); resilience (optimism/positivity and self-care); and app design improvements (personalization and notifications/reminders).
Conclusions: The qualitative evaluation provided insights into which components were utilized and how one, or a combination of the multi-component features, may be enhancing users’ experiences. Lessons learned suggest that the Roadmap app contributed to promoting resilience during the acute phases of HCT care. Nonetheless, features that provided enhanced personalization may further improve longer-term engagement.
Background:
Lower preoperative pelvic obliquity (PO) and L5 tilt have been associated with good radiographic outcomes when the fusion ended short of the pelvis in children with neuromuscular scoliosis (NMS). Our purpose was to identify indications to exclude the pelvis in children with hypotonic NMS treated with growth-friendly instrumentation.
Methods:
This was a multicenter retrospective review. Children with spinal muscular atrophy and muscular dystrophy treated with dual traditional growing rod, magnetically controlled growing rod, or vertical expandable prosthetic titanium rib with minimum 2-year follow-up after the index surgery were identified.
Results:
A total of 125 patients met the inclusion criteria. Thirty-eight patients had distal spine anchors (DSAs) and 87 patients had distal pelvic anchors (DPAs) placed at the index surgery. Demographics and length of follow-up were similar between the groups but there was a greater percentage of DPA patients who were nonambulatory [79 patients (91%) vs. 18 patients (47%), P<0.0001]. Preindex radiographic measures were similar except the DSA patients had a lower PO (11 vs. 19 degrees, P=0.0001) and L5 tilt (8 vs. 12 degrees, P=0.001). Postindex and most recent radiographic data were comparable between the groups. There was no difference in the complication and unplanned returns to the operating room rates.
Subanalysis of the DSA group based on ambulatory status showed similar radiographic measures except the ambulatory patients had a lower PO at all time points (preindex: 5 vs. 16 degrees, P=0.011; postindex: 6 vs. 10 degrees, P=0.045; most recent follow-up: 5 vs. 14 degrees, P=0.028). Only 1 ambulatory DSA patient had a PO ≥10 degrees at most recent follow-up compared with 6 nonambulatory DSA patients. Three (8%) DSA patients, all nonambulatory, underwent extension of their instrumentation to the pelvis.
Conclusions:
Pelvic fixation should be strongly considered in nonambulatory children with hypotonic NMS treated with growth-friendly instrumentation. At intermediate-term follow-up, revision surgery to include the pelvis was rare but DSAs do not seem effective at maintaining control of PO in nonambulatory patients. DSA and DPA were equally effective at maintaining major curve control, and complication and unplanned returns to the operating room rates were similar.
Level of Evidence:
Level III—therapeutic.
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