The SickleFit Exercise Pilot Study for older adults with sickle cell disease: feasibility, safety, and acceptability

Background

Despite increases in lifespan for adults with sickle cell disease (SCD), older adults with SCD experience progressive functional impairment. Due to a critical need for interventions to maintain mobility and independence, we piloted SickleFit--an exercise program for older adults with SCD (≥40 years) adapted from Gerofit.

Methods

We enrolled 30 older adults with SCD across 5 cohorts in a single academic center. We excluded individuals with unstable cardiac disease, oxygen-dependence, moderate or severe cognitive impairment, and wheelchair-bound. The virtual exercise sessions were personalized for functional status and included low to moderate intensity cardio, strength, balance, mobility, and mindfulness training. The feasibility endpoint was for ≥80% of participants to attend ≥50% of classes. The safety goal was no major or life-threatening adverse events (AEs) related to the intervention. Participants completed acceptability surveys. Exploratory outcomes included change in physical performance.

Results

The feasibility endpoint was met by 83% of participants. There were 46 minor AEs with 12 related to the intervention and 16 major AEs with 3 related to the intervention. All participants who had an exercise-related AE were able to return and successfully compete the program without further issue. No life-threatening adverse events occurred. Nearly all (96.7%) reported satisfaction with the program and a routine of regular exercise (93%). The majority of participants saw improvements in their timed up-and-go (76.9%), gait speed (69.2%), 6 minute walk distance (65.2%), plank (64.7%), and left leg balance (52.4%). Some of the participants saw improvement in grip strength (34.6%) and chair stands (42.3%). All participants reported their health and fitness improved (100%), while the majority felt their cardiovascular endurance (85.7%), mobility (78.6%), and strength (64.2%) improved. A portion of the participants found the mindfulness portion to be life-altering (14.3%), while a majority found it helpful (64.3%).

Conclusions

This pilot study demonstrated SickleFit is feasible and enjoyable for older adults with SCD, as most AEs were unrelated to the program and many participants chose to continue exercising by further tailoring their routine. While many participants displayed measurable improvements in function that agreed with their subjective responses, investigation is still needed in a fully-powered study to determine clinically meaningful change values for older adults with SCD. Future studies will investigate how SickleFit improves function and quality of life for older adults with SCD, as well as identify barriers for implementation of a random control trial at multiple sites.

SickleFit baseline characteristics of participants table

SickleFit exploratory changes in physical function

*Clinically meaningful improvement values: Usual Gait Speed: .05 m/s; Timed Up-and-Go: 1.1 s ; Six minute walk distance: 20 meters; Grip Strength: 5 kg; Chair Stand: 2 repetitions; Plank: 10 seconds and Single leg balance: 13.1 seconds are not validated, strictly theoretical