Background In adolescents diagnosed with chronic rheumatologic conditions, self-management skills are an essential component of their transition to adult independent health care.
Objectives The aim of this cross-sectional survey was to assess medication and exercise adherence, medical regimen knowledge and health care tasks in adolescents diagnosed with chronic rheumatic disease.
Methods The study was conducted on 75 adolescents aged 13-20 years with a confirmed diagnosis of chronic rheumatic disease attending the rheumatology clinic of our institution. Exclusion criteria included cognitive impairment. Disease self-management assessment included assessing degree of medication and exercise adherence and completing health care tasks. Medication adherence wasassessed by asking participants if they missed doses of medication, frequency of doses missed per week and the reason for missing the doses. Participants were said to be adherent if they took all doses of their medication and performed the prescribed exercise programme. Medication regimen knowledge was assessed by asking patients the name, dosage and purpose of each medication. Independence in self-management tasks was assessed using a detailed 15-question survey. The participants were asked to report whether a given health care task such as refilling prescriptions and keeping a calendar of appointments was completed independently, completed with some assistance or completed by some other person.
Results The mean age of the patients was 15.5 years, 77% were female, mean disease duration was 5.8 years, and mean medication usage was 3.2 (2.3). Fifty-one percent had juvenile idiopathic arthritis, 28 (37%) had systemic lupus erythematosus, 3% had dermatomyositis, 4% had systemic sclerosis, 3% had ankylosing spondylitis, 1% had Behcet’s Disease and 1% had Familial Meditteranean disease. Fifty-six per cent and 37% reported complete adherence to medications and exercise prescription respectively. Forty-five per cent reported missing 1-2 medication doses per week, 51% knew medication names, 72% knew correct dosage regimens and 52% knew the purpose of their medication. The most common cause for missing medication was forgetfulness. For health care tasks, 69% knew symptoms of their disease, 64% asked their doctors questions, 19% scheduled their own medical and/or laboratory appointments, 20% got their prescriptions refilled and 17% had their own medical file. Health care self-tasks failed to improve with increasing age.
Conclusions The findings of the present study indicate that adolescents with chronic musculoskeletal and rheumatic diseases have inadequate self-management skills. Additional patient education interventions and support is required to enable them to take better control of their illness and thereby improve health outcomes and quality of lifeas these adolescents enter into adult life.
Disclosure of Interest None Declared