The daily phone diary in adolescents and young adults with spina bifida: utility and psychometric evidence.

OBJECTIVE

This study provided descriptive, psychometric, and correlational data on activity involvement, including engagement with and adherence to medical care activities, using the daily phone diary (DPD) methodology within the context of an ongoing longitudinal study of adolescents and young adults (AYAs) with spina bifida (SB).

METHODS

As part of a longitudinal study, AYAs with SB aged 16-24 at Time 5 (n = 68) and aged 19-26 at Time 6 (n = 75) completed a DPD across 3 days, along with measures of demographics, condition severity, and medically related psychosocial constructs.

RESULTS

Findings revealed that AYAs spent roughly two-thirds of their time either sleeping or engaged in recreational activities in their homes. They were more likely to spend time at home (with 50% of this time engaged in less active activities such as TV watching) and less time engaged in school and work activities than has been found in AYAs with other chronic medical conditions. Participants were also more likely to report low rates of catheterization, suggesting adherence challenges. The DPD method showed satisfactory stability over time. DPD data on medical care activities demonstrated adequate convergent validity as well as correlations with lesion level and measures of medical responsibility and medical skill mastery.

CONCLUSIONS

This study supports the use of the DPD method to assess engagement with and adherence to medical care activities in AYAs with SB. It also provides an assessment of engagement in other activities, such as in-home recreation and out-of-home school- and work-related activities.