Faint Nicholas R, Staton Janelle M, Stick Stephen M, Foster Juliet M, Schultz André
The University of Notre Dame, Perth, Western Australia, Australia.
Department of Respiratory and Sleep Medicine, Princess Margaret Hospital for Children and Telethon Kids Institute, University of Western Australia, Perth, Western Australia, Australia.
J Paediatr Child Health. 2017 May;53(5):488-493. doi: 10.1111/jpc.13458. Epub 2017 Feb 10.
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.
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.
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 = 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).
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.
患者依从性是规定治疗有效性的重要组成部分,且与有益的疾病转归相关,但在患有囊性纤维化的青少年中,依从性往往欠佳。多种因素可能导致治疗依从性,包括疾病知识和自我效能感。对于患有囊性纤维化的青少年:(i)比较青少年及其父母在转至成人护理之前的疾病知识;(ii)确定疾病知识(青少年、父母)与依从性之间的关系;(iii)评估自我效能感及其与疾病知识和依从性的关联。
从一家三级儿童医院招募患有囊性纤维化的青少年及其父母。分别使用疾病管理 - 囊性纤维化知识量表和一般自我效能感量表评估疾病知识和自我效能感。利用药房记录计算药物持有率,以衡量前一年的治疗依从性。
招募了39对青少年(年龄12 - 17岁(中位数14岁))及其父母。青少年对高渗盐水而非其他药物的依从性与疾病知识显著相关(r = 0.40,P = 0.029)。青少年自我效能感的平均值(标准差)为30.8(4.0),与疾病知识或依从性无关。青少年的疾病知识平均值(标准差)低于父母(分别为55(16)%和72(14)%,P < 0.001)。
患有囊性纤维化的青少年的疾病知识欠佳,即使在转至成人护理前的两年内也是如此。鉴于某些治疗的依从性与疾病知识相关,我们的结果表明需要对患有囊性纤维化的青少年进行教育干预,以优化自我管理和健康转归。