Six-Month Data From a Pilot Self-Management Intervention ForAdolescents With Sickle Cell Disease

Tanabe and colleagues (2010) highlighted the importance of engaging patients with Sickle Cell Disease (SCD) in disease self-management activities to improve health outcomes. Specifically, they recommended interventions that address disease self-efficacy, patient-provider communication, healthy lifestyle behaviors, future planning, and advocacy. The Stanford Chronic Disease Self-Management Program (CDSMP) is a six-week, structured intervention for adults with a chronic disease that helps them develop self-management skills in all of these areas. The CDSMP has been implemented with adults with a variety of chronic diseases (e.g., arthritis, Type II diabetes), and outcome data has shown improvements in health utilization, health status and self-management behaviors for participants six-months post participation in the CDSMP (Lorig et al. 2001). There is limited data available on the effectiveness of the CDSMP for adults with SCD, particularly young adults and adolescents. As a first step in examining the effectiveness of the CDSMP in adolescents with SCD, we conducted two CDSMP intervention groups with SCD patients 16-24 years of age.

The objective of the study was to assess: 1) the feasibility, acceptability and utility of the CDSMP with this population, and, 2) changes in disease self-efficacy, quality of life (QOL), and self-management behaviors from pre to 6-months after participation in the CDSMP.

Patients were eligible if they: 1) had a diagnosis of SCD; 2) were followed by the University of Cincinnati Health Complex or Cincinnati Children’s Hospital Medical Center (CCHMC) sickle cell clinics; 3) were between the ages of 16 -24; and, 4) had no significant cognitive limitations. Participants received a letter followed by a phone call inviting them to participate in the CDSMP and were compensated at the end of each weekly session.

Eighteen adolescents completed the CDSMP (i.e., attended four of the six sessions) and have completed their 6-month follow-up. The majority of patients were female (56%) and had Hb SS (SS 67%; SC 28%; Sβ⁺Thal 5%); the mean age for participants was 19.06 (SD = 2.44). Acceptability data indicated that sessions 2 and 6 (physical activity and exercise, managing difficult emotions, working with your healthcare provider, and planning for the future) were the most beneficial. Overall participant satisfaction with the CDSMP was high, M=8.88 (SD=1.67) on a scale of 1-10 (10=totally satisfied). Qualitative comments suggest that the participants enjoyed interacting with other patients and learning skills to help manage their illness. Repeated measures ANOVAs were used to examine the QOL and disease self-efficacy data. There was not a significant improvement on PedsQL total scores over time. Patient-reported disease self-efficacy scores showed a positive trend (F(1.572, 9.432) = 3.442, P = .083). Participants reported continuing to use a number of the self-management skills/strategies they learned during the intervention such as better breathing (86.7%), problem solving (73.3%), and action planning (66.7%).

Initial Results from this small pilot suggest that the CDSMP may have some promising benefits as an intervention for adolescents and young adults with SCD given its feasibility, acceptability, and potential impact on disease self-efficacy and utilization of skills learned. In addition to participants being satisfied with the content, structure, and opportunity to interact with other participants, they also reported that they continued to use the self-management skills that they had developed. Disease self-efficacy also trended upwards for participants over the course of the intervention. Although improvements in quality of life were not observed at six-months post-intervention, the small sample size likely had an impact. The next steps will be to examine these outcomes for the duration of the post-intervention period (i.e., nine and twelve-month follow-ups) to determine whether the improvements in disease self-efficacy are maintained and whether we see quality of life improving once analyses are completed with a more complete sample size.

No relevant conflicts of interest to declare.