Table 1.
Themes by adherence category
| Components of adherence | Nonadherence themes | ||||
|---|---|---|---|---|---|
| Intentional | No. of participants | Unintentional | No. of participants | ||
| Total | 31 | 69 | |||
| Initiation | Decided not to start | Negative attitudes or perceptions of hydroxyurea | 5 | External influencers | 11 |
| Fear of adverse effects | 4 | Doctor did not prescribe hydroxyurea | 7 | ||
| Does not like taking medication in general | 1 | Witnessed hydroxyurea not helping others | 3 | ||
| Uncertainty of potential effectiveness | 2 | Caregiver made decision to not start | 1 | ||
| Implementation | Adherence while taking | Does not like taking medicines in general | 6 | Forgetfulness | 22 |
| Did not perceive any benefits, contributing to lack of motivation to take regularly | 2 | Competing life demands | 3 | ||
| Complexity of treatment regimen (eg, multiple medications, different dosages, multiple pills) | 6 | ||||
| Taking hydroxyurea with food; forgetting or not getting a chance to eat so misses dose | 1 | ||||
| Physical and emotional state on any day | 1 | ||||
| Logistics of obtaining hydroxyurea (laboratory visits, pharmacy trips) | 1 | ||||
| Discontinuation | Decision to discontinue taking | Grew concerned about hydroxyurea because of potential adverse effects, history of hydroxyurea as a cancer drug, preference for treatments other than hydroxyurea (eg, chronic transfusions), did not perceive hydroxyurea as being effective | 8 | Experienced adverse effects | 16 |
| 3 | Hydroxyurea was not effective per medical team report | 10 | |||
| 5 | Taken off hydroxyurea because of poor adherence | 1 | |||
| 5 | Pregnancy | 3 | |||
| 4 | Medical team decision | 7 | |||