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Adherence to treatment in chronic diseases in adolescents : psychosocial caracteristics of patients and caregivers in HIV infection and cystic fibrosis

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Aline Santarem Ernesto
Total Authors: 1
Document type: Doctoral Thesis
Institution: Universidade Estadual de Campinas, Faculdade de Ciências Médicas
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Background: This study had the aim of evaluating adherence to treatment in chronic diseases, HIV/Aids and cystic fibrosis (CF), affecting adolescents followed up at reference services and to analyzing associations between adherence and psychosocial features of patients and caregivers. Methods: Analytical, observational, cross-sectional study. Fifty-four adolescents with HIV/Aids and 45 caregivers, and 43 adolescents with CF and 35 caregivers were evaluated. Adherence in the group of adolescents with chronic diseases was evaluated by self-report (from the person responsible for medicine administration) about medication intake in the 24 hours and 7 days preceding the interview. In the group of HIV-infected adolescents, we consulted the pharmacy dispensing records (PDR) about medicine withdrawing in the 3 months preceding the interview. Data about demographic, psychosocial and clinical variables were collected, together instruments for evaluation of resilience (Wagnild-Young resilience scale), depression and anxiety (Beck's inventories), family support perception (Inventory of Family Support Perception) and quality of life (QOL) (Brazilian version of Youth Quality of Life Instrument-Research). For the caregivers the same resilience, depression and anxiety scales were applied, beyond the Neo Five Factor Inventory-Revised (NEOFFI-R) and also the abbreviated version of World Health Organization Quality of Life (WHOQOL-Bref). Demographical and psychosocial outcomes were compared to a healthy control group (CG) composed of 69 adolescent/caregiver dyads. Results: Mean adherence values by self-report were 86.8% (24h, HIV), 89.2% (7d, HIV), 88,1% (24h, CF) and 89,9% (7d, CF), being adherence prevalence by PDR in the HIV group 53.7%. A significantly higher risk of the following outcomes was observed: depression in HIV-infected adolescents in relation to CG; depression in caregivers of HIV adolescents in relation to CF and CG caregivers; anxiety in caregivers of HIV-infected adolescents in relation to CG. Caregivers of HIV-infected adolescents showed lower physical health QOL and personality domain extroversion scores, when compared to CF and CG. A significantly higher rate of adherence was observed for the 7-day interval in the HIV group. The following independent variables showed statiscally significant associations with adherence: 24-hour and 7-day self-report: Adolescents: lower adherence related to missing consultations and alcohol use. Higher adherence related to religious practice, caregivers responsible for medication, family adaptation, relational and environmental QOL. Caregivers: lower adherence related to perception of adverse effects of medicines for adolescents and tobacco smoking. Higher adherence related to lower number of home dwellers and less time spent with treatment. PDR: Adolescents: lower adherence related to missing consultations, adverse effects, more time spent with therapy, depression. Higher adherence related to family adaptation. Caregivers: lower adherence related to depression. Conclusion: Psychosocial outcomes were related to chronic disease experience and adherence to treatment. These findings prompt the need of a systematic approach to mental health in the chronic diseases scenario in adolescents (AU)

FAPESP's process: 13/10710-5 - Adherence to treatment in chronic diseases in adolescents: characteristics of patients and caregivers in HIV infection and cystic fibrosis.
Grantee:Aline Santarem Ernesto
Support type: Scholarships in Brazil - Doctorate