Integrative Care is Promising Approach for Sickle Cell Youth

Up to 84% of younger patients note a positive experience with holistic therapeutic approaches to treating sickle cell-related pain.

Findings from a new sing-center study indicate that integrative approaches to sickle cell disease treatment may improve adolescent experiences with pain and lead to overall patient satisfaction.

“[Integrative health care] emphasizes a holistic, patient-focused approach to health care and wellness, often including mental, emotional, functional, spiritual, social, and community aspects, and treating the whole person rather than one organ system,” wrote the investigators.

Led by Laila Mahmood, MD, a team from the Sickle Cell Integrative Clinic at Children’s National Hospital, Washington, DC, evaluated 2-year patient experiences at their twice-monthly integrative clinic—which combined non-pharmacological interventions with standard of care management.

Responses to Integrative Treatment

The study included 31 patients attending the clinic. A majority (67.7%) were female, all patients were Black, and the mean age was 15 years (range, 11-22 years).

Most patients (74%) were on hydroxyurea, and 77% were taking short-term and/or long-acting opioids.

“Services offered during a comprehensive visit include hematology, psychology, and other integrative approaches such as healing touch, aromatherapy, acupuncture, and mindfulness,” noted Mahmood and colleagues.

Patient satisfaction was assessed in-clinic using the Treatment Evaluation Inventory-Short Form (TEI-SF) survey, with higher scores on a 5-point scale representing greater satisfaction with a treatment. 

Among the 31 patients who received integrative therapies, 25 completed the survey.

As such, a majority (72%) agreed that integrative treatment was an acceptable form of care for adolescent pain and pain related to sickle cell disease. 

As many as 64% believed these treatments will result in permanent improvement, and 84% reported having a positive experience with the therapies.

Nonetheless, despite believing this approach to be effective, more than 80% agreed that they should be offered following adolescent consent.

Further, 32% believed patients may experience discomfort during these treatments.

Perspectives and Challenges

The investigators noted that current challenges to implementing this integrative approach may include lack of insurance coverage, limited availability of resources and providers, and lack of funding and compensation of providers.

In terms of their studies, they recognized that the positive feedback may be indicative of individual preferences and bias towards this type of treatment.

They also noted a need to expand evidence-based research and patient populations to more accurately and comprehensively determine the effectiveness of these therapies. Doing so can help physicians further coordinate the use of appropriate therapies with more conservative and traditional methods so as to optimize patient outcomes.

“We would like to note that while integrative therapies may be beneficial in treating many symptoms, they also need to be used with caution,” Mahmood and team indicated.

They noted concerns that patients may desire to use alternative therapies over standard of care medical therapies, which could lead to adverse outcomes.

“Our experience suggests that encouraging conversations and offering certain safe integrative therapies alongside conventional sickle cell disease therapies allows patients to have an open discussion about their beliefs and treatment goals,” they concluded.

The study, “Integrative Holistic Approaches for Children, Adolescents, and Young Adults with Sickle Cell Disease: A Single Center Experience,” was published online in Contemporary Therapies in Medicine.