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G/THUR/ONC1 SICKLE CELL DISEASE AND ADOLESCENCE: FEARS AND LIMITATIONS
H. E. Jones, C. Turner, H. Appleby, B. Inusa.Evelina Children’s Hospital, London, UK
Objective: To explore the impact of sickle cell disease (SCD) in the life of adolescent patients and to understand their fears. To identify ways of improving interaction within the group.
Methods: A semistructured questionnaire jointly developed by doctors, psychologists, nurses and teenagers was administered to 41 adolescent sickle cell patients attending clinic. 24 males and 17 females completed the survey, ages spanning from 12 to 19 years (mean 15 years 5 months). 31 patients had HbSS, 9 had HbSC, and 1 had HbSβ0. 27 of the children were diagnosed from birth.
Results: One of the most commonly reported limitation in the patients’ experience was their inability to participate in sports compared to peers (15%). The respondents were also concerned about body image (13%) complaining about yellow eyes, being smaller than peers and needing to wear “excessive” less stylish clothing to keep warm. They were affected by the continuous aches and pains (13%), and up to 14% felt they missed out on normal activities and schooling. Their biggest fear (30%) was “fear of death” or dying at a young age. Some of the patients reported living with the fear of impending vaso-occlusive crisis (15%). The physical consequences of having SCD, for example, stroke (7%) was also a reported fear, or passing the sickle gene to their children. Over 56% did not have a friend with SCD. Up to 41% suggested setting up of a social group or camp to meet peers with chronic illness. Compliance with penicillin prophylaxis was poor with over 50% missing >1 dose/week.
Conclusions: This survey highlights the fact that sickle cell patients feel limited by their inability to participate in the daily activities that their peer group take for granted. It …