Teens With Cystic Fibrosis, Other Chronic Diseases Adapt To their Condition Easier Into Adulthood With Technology

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by Charles Moore |

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CF teen with tablet

CF teen with tabletA new study by researchers at the University of California, San Diego School of Medicine finds that technology helps adolescents with chronic diseases (ACD) in developing the independent, self-management skills they need as they assume the responsibilities and privileges of adulthood.

Teens with chronic diseases such as cystic fibrosis, gastrointestinal disorders (eg: Crohn’s disease) and Type 1 diabetes often find the transition of managing their health care needs in adulthood challenging, and preparations for this transition are often clinic-based, costly and fall short of fully or effectively engaging this patient population. The UCSDSM researchers found that the answer to helping ACD individuals developing the skills they need could be right at the patients fingertips.

The study, which is published in the June issue of Pediatrics entitled “Preparing Adolescents With Chronic Disease for Transition to Adult Care: A Technology Program” (Pediatrics peds.2013-2830; published ahead of print May 19, 2014, doi:10.1542/peds.2013-2830) is coauthored by Jeannie S. Huang, MD, of the Department of Pediatrics at UC San Diego School of Medicine and Rady Childrens Hospital – San Diego; Laura Terrones, MPH, and Trevor Tompane, MPH, Department of Pediatrics, UC San Diego; Mark Pian, MD, and Michael Gottschalk, MD, PhD, Department of Pediatrics, UC San Diego and Rady Childrens Hospital San Diego; Lindsay Dillon, MPH, and Gregory J. Norman, PhD, Department of Family and Preventative Medicine, UC San Diego; and L.K. Bartholomew, EdD, MPH, University of Texas School of Public Health, Houston, Texas.

The coauthors observe that adolescents with chronic disease are obliged develop independent disease self-management and learn to communicate effectively with their health care team in order to transition successfully from pediatric to adult-oriented health care systems. They note that disease-specific interventions have been implemented to aid specific ACD groups through transition, and that a generic approach might be effective and cost-saving.

For the study, eighty-one ACD, aged 12 to 20 years, were recruited for a randomized clinical trial evaluating an 8-month transition intervention (MD2Me), and MD2Me recipients assigned to the intervention group received a two-month intensive Web-based and text-delivered disease management and skill-based intervention via the Internet and mobile phone system. Patients were asked to use a secure web site weekly to receive theme-based materials and lifestyle tips. Automated text messages were also sent three to five times a week to help patients perform a variety of tasks, such as monitoring symptoms, keeping appointments and interpreting medical bills. This was followed by a 6-month review period.

The intervention was applicable to adolescents with diverse chronic illnesses. Controls received mailed materials on general health topics. Disease management, health-related self-efficacy, and health assessments were performed at baseline and at 2 and 8 months. Frequency of patient-initiated communications was recorded over the study period, and outcomes were analyzed according to assigned treatment group over time.

The researchers found that MD2Me recipients demonstrated significant improvements in performance of disease management tasks, health-related self-efficacy, and patient-initiated communications compared with controls, and that outcomes for these ACD improved significantly among recipients of a generic, technology-based intervention.

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Consequently, they conclude that technology can deliver transition interventions to adolescents with diverse chronic illnesses, and a generic approach offers a cost-effective means of positively influencing transition outcomes, but that further research is needed to determine whether improved short-term outcomes translate into an improved transition for ACD.

huangj“Parents usually take a leading role when treating adolescents with chronic disease, but we want teenage patients to have a voice and become advocates for their own health,” says principal investigator Jeannie Huang, MD Associate Professor of Pediatrics in Residence in the UCSDGIFacultyDepartment of Pediatrics at UC San Diego School of Medicine, and Rady Childrens Hospital – San Diego in a UCSD release. The goal of the program is ultimately to improve communications between affected teens and their doctors.”

Dr. Huang’s current research interests focus on how to improve outcomes in pediatric chronic disease including obesity, inflammatory bowel disease, cancer, diabetes, and cystic fibrosis. In particular, she is involved in projects addressing chronic disease self-management by adolescents and young adults and in programs improving weight management among obese children and their families. Her projects incorporate available mobile and internet technologies to improve patient-healthcare interactions and communications. As a research member of the Center for Wireless & Population Health Systems, Dr. Huang works with other investigators to determine how the health of individuals, families, social networks, and populations can be improved through creative use of networked technologies and ubiquitous computing (https://cwphs.ucsd.edu).

Dr. Huang says poor transition experiences are commonly reported among ACD and have been linked to an increase in mental health and psychosocial issues. However, “by communicating using technology in a secure way, we are meeting these patients where they are and becoming more intimately involved in their health care journey and preparation into adulthood,” she comments.

Participating patients in the UCSD study had access to a texting communication system that allowed them to report health concerns via text messages directly sent to the patients health care team. Dr. Huang says this feature resulted in one patient in particular accessing timely emergency care when he might otherwise not have or would likely have waited until his condition had dramatically declined.

“The study found patients were communicating more with their physicians via text message and phone, and health care providers were utilizing the technology to start a productive dialogue with young patients and triage in an innovative way,” observes Dr. Huang. “In prior patient interviews, we found that advice given via a technology-based intervention appeared to be better tolerated. Patients felt they weren’t being judged when reporting issues by technology rather than in person.”

The study also resulted in no adverse events, no confidentiality breaches and showed that patients reported better self-efficacy and confidence in managing their own health care issues.

Dr. Huang notes that use of technology embedded within a medical program provides a low-cost alternative for intervention in at-risk populations distributed across time and geography and is independent of the clinic setting. “We hope to do further studies to understand how to keep this momentum going and continue to empower adolescents as they enter the next phase of their life while managing their disease,” she concludes.

This research was supported by the National Institutes of Health (grant 1 RC1 MD004721).

University of California, San Diego School of Medicine

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University of California, San Diego