Investigating self‐efficacy, disease knowledge and adherence to treatment in adolescents with cystic fibrosis

Abstract

Aim Patient adherence is integral to the effectiveness of prescribed treatment, and is associated with beneficial disease outcomes, yet in adolescents with cystic fibrosis, adherence is often sub‐optimal. Multiple factors may contribute to treatment adherence, including disease knowledge and self‐efficacy. In adolescents with cystic fibrosis: (i) to compare the disease knowledge of adolescents and their parents before transition to adult care; (ii) to determine the relationship between disease knowledge (adolescent, parent) and adherence; and (iii) to evaluate self‐efficacy and its association with disease knowledge and adherence. Methods Adolescents with cystic fibrosis and their parents were recruited from a tertiary children's hospital. Disease knowledge and self‐efficacy was assessed using the Knowledge of Disease Management‐CF and General Self‐Efficacy Scales respectively. Using pharmacy records, medication possession ratio was calculated to measure treatment adherence in the preceding year. Results Thirty‐nine adolescent (aged 12–17 (median 14) years) and parent pairs were recruited. Adherence to hypertonic saline, but not other medications, was significantly associated with disease knowledge in adolescents (r 2 = 0.40, P = 0.029). Mean (SD) adolescent self‐efficacy was 30.8 (4.0), and not associated with disease knowledge or adherence. Mean (SD) disease knowledge was less in adolescents than parents (55 (16)% and 72 (14)% respectively, P < 0.001). Conclusion Disease knowledge is sub‐optimal in adolescents with cystic fibrosis, even in the 2 years immediately before transition to adult care. Given that adherence with some treatments has been associated with disease knowledge our results suggest the need for educational interventions in adolescents with cystic fibrosis to optimise self‐management and health outcomes.

Greater number of perceived barriers to hydroxyurea associated with poorer health‐related quality of life in youth with sickle cell disease

“…Although not among the most frequently reported barriers, a lack of knowledge about hydroxyurea was acknowledged by one in four adolescents in this sample. Knowledge about medications is a prerequisite for but does not guarantee medication adherence . During adolescence, youth begin to assume more self‐management responsibility .…”

“…Barriers to hydroxyurea frequently endorsed by at least 25% of parents and/or youth Parents of females or female youth only; barriers reported by ≥25% of the sample are bolded. Knowledge about medications is a prerequisite for but does not guarantee medication adherence 54,55. During adolescence, youth begin to assume more self-management responsibility 56.…”

Impact of home spirometry on medication adherence among adolescents with cystic fibrosis

“…Barriers to medication adherence among adolescents with CF include forgetfulness, competing time pressures, and doubts about the necessity, or usefulness of the prescribed treatment regimen . There is a decline in parental supervision during adolescence, which has been shown to negatively impact treatment adherence in this group .…”

“…There is a decline in parental supervision during adolescence, which has been shown to negatively impact treatment adherence in this group . Knowledge about the disease, which is often deficient among adolescents, has also been shown to influence adherence . With worsening disease severity, the complexity of the prescribed treatment regimen increases in patients with CF .…”

“…Many of the same studies that elicited the aforementioned barriers have also identified multiple adherence motivators such as recognition of the impact of non‐adherence on health outcomes, a strong relationship with the CF care team and encouragement from friends and family . Interventions that promote self‐management skills, whether they be a knowledge‐based intervention such as providing more education about the disease process and available treatments, or a behavioral intervention like motivational interviewing, appear to improve medication adherence in individuals with CF .…”