Access to physical therapy may be issue for young sickle cell patients
Adolescents, young adults with disease face numerous barriers to care: Study
Adolescents and young adults with sickle cell disease (SCD) may face challenges in accessing physical therapy that could help them manage symptoms, a study reports.
While young people with poorer quality-of-life metrics tended to receive more referrals to physical therapists, this did not translate to more physical therapy visits for this group.
“Poor attendance could suggest barriers, such as transportation challenges, time constraints, or limited understanding of the role of [physical therapy] in their condition,” researchers wrote.
The study, “Describing Outpatient Physical Therapy Use Among Adolescents and Young Adults With Sickle Cell Disease: A Single-Center Retrospective Study,” was published in Pediatric Blood & Cancer.
Pain most common reason for sickle cell physical therapy referrals
SCD is a genetic condition that causes red blood cells to become misshaped, die prematurely, and restrict or block blood flow. It can lead to a series of symptoms that reduce quality of life, including episodes of acute pain called vaso-occlusive crises. Some SCD treatments focus on easing pain associated with these crises, which can damage bones and joints over time.
People with SCD may seek physical therapy to address pain, joint problems, and other issues.
“Physical therapists are trained to provide targeted interventions to address a myriad of physical impairments and to promote independent functional ability for all ages,” the researchers wrote.
Despite the potential benefits of physical therapy for SCD, there’s limited data on its use by these patients.
To learn more, the researchers in this study assessed physical therapy referrals and visits for adolescents and young adults with SCD at Nationwide Children’s Hospital, in Ohio. They identified 150 patients, 13 and older, who visited the hospital’s SCD comprehensive clinic between 2010 and 2023. Through the clinic, patients can consult blood specialists (hematologists), psychologists, social workers, and nurses, as well as have access to other services.
Most patients were Black or African American and were a median age of 18.9 years. Each completed the Pediatric Quality of Life (PedsQL) questionnaire during at least one visit to the clinic.
Comprehensive clinic providers referred 40% of participants to physical therapy at the hospital or its outpatient clinics during the study period. Each of the referred individuals had a median of two referrals for different symptoms or reasons.
The most common reason clinicians recommended physical therapy was pain or issues relating to the joints. Other reasons included deconditioning (loss of fitness or strength due to limited physical activity), unspecific chronic pain, and other neurological and developmental issues.
Quality-of-life metrics affected likelihood of referral
Most referrals (70.6%) came from hematologists, but some were from other medical professionals, such as orthopedic specialists and rheumatologists. These non-hematology referrals translated to higher physical therapy attendance.
“This may be because non-hematology providers (e.g., orthopedics, sports medicine) frequently prescribe [physical therapy] as part of their care, and have experience addressing [physical therapy] access barriers and stressing the importance of attending [physical therapy] to patients and families,” the researchers wrote.
While age did not affect the likelihood of receiving a physical therapy referral, health-related quality-of-life metrics did. Participants who were referred to physical therapists had a lower overall score on the PedsQL questionnaire, indicating poorer health-related quality of life compared with those who did not receive referrals (mean of 73.3 vs 82.8). The researchers saw a similar pattern when comparing the PedsQL subscore for physical functioning.
This suggests that the most physically impaired [adolescents and young adults] with SCD, and the ones who may also have the most potential to benefit from [physical therapy], did not or were not able to access care that could improve their [health-related quality of life].
However, lower quality-of-life scores did not correlate with patients receiving more physical therapy. Of the 60 patients referred to physical therapy, 39% did not complete any appointments.
“This suggests that the most physically impaired [adolescents and young adults] with SCD, and the ones who may also have the most potential to benefit from [physical therapy], did not or were not able to access care that could improve their [health-related quality of life],” the researchers wrote.
The team noted future investigations could test the efficacy of various interventions in increasing access to physical therapy. For example, free transportation to appointments has improved attendance in other populations.
“Providing patient and family education on the importance of [physical therapy] could also yield improvements in [physical therapy] attendance,” the team wrote.
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