Teens with sickle cell are armed and ready

April 17, 2014

Adolescents with sickle cell disease (SCD) are highly knowledgeable about their condition and generally have a positive outlook about transition programs and life beyond, according to a small pilot study.

 

Adolescents with sickle cell disease (SCD) are highly knowledgeable about their condition and generally have a positive outlook about transition programs and life beyond, according to a small pilot study.

The information comes from a new SCD-specific assessment tool developed by Amy Sobota, MD. and colleagues. The questionnaire helps determine the readiness of young adults with SCD to transition from pediatric to adult care and deal with adult life. The tool measures 5 knowledge skill sets (medical, educational/vocational, health benefits, social, and independent living) and 3 psychological areas (feelings, stress, and self-efficacy).

The researchers tested the tool in a small pilot study involving 47 teenagers who were being seen at Boston Medical Center’s SCD transition clinic. The researchers explain that, historically, SCD patients have high numbers of hospital admission and emergency department visits surrounding the time when they transition from child to adult care. The clinic tries to address their specific needs.

Of the 33 18- to 22-year-olds who completed the assessment:

  • 97% said they could adequately explain their condition to others and that they understood how they came to have SCD.

  • 94% understood the disease could be passed to their children.

  • 100% intended to pursue college or some other type of post-high school education.

  • 70% knew where to find information about job training and opportunities.

  • 73% reported already having full-time or part-time job experience.

  • 79% said they were ready to go to doctor appointments by themselves.

  • 64% said they understood the various types of health insurance available to them, but only 13% had drawn up a portable medical history form to give to healthcare providers.

  • 97% claimed to have a good social support system.

According to the National Institutes of Health, SCD affects between 70,000 and 80,000 Americans. Because of improved treatments and care, people who have the disease are now living into their 40s, 50s, and beyond.

 

 

To get weekly clinical advice for today's pediatrician, subscribe to the Contemporary Pediatrics eConsult.