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Journal of Pediatric Psychology 8(4) pp. 367-377, 1983
© 1983 Society of Pediatric Psychology

research-article

Behavioral Assessment and Management of Adherence to Factor Replacement Therapy in Hemophilia1

Elaine Sergis-Deavenport2 and James W. Varni2

Childrens Hospital of Los Angeles, Orthopaedic Hospital and University of Southern California

2All correspondence should be addressed to Elaine Sergis-Deavenport, Division of Hemeatology Oncology, Childrens Hospital of Los Angeles, 4650 Sunsent Boulevard, Los Angeles, California 90027: or James W. Varni, Behavioral Pediatrics Program, Orthopaedic Hospital, 2400 South Flower Street, Los Angeles, California 90007.

A clinical research study was undertaken to evaluate the systematic application of behavioral techniques to teaching factor replacement therapy (FRT) for the hemophilia home care program. During FRT, the performance and level of proficiency of two groups of parents were assessed and compared. In the treatment group, the parents had no previous training in FRT. In the comparison group, the parents were experienced in FRT for one or more years on the home care program. Both groups were tested on three classifications of factor replacement behaviors (reconstitution, syringe preparation, and infusion) considered essential for safe and correct administration of factor concentrate. A behavioral assessment checklist was developed to systematically and objectively record parental performance. Behavioral intervention consisted of modeling, observational learning, behavioral rehearsal, corrective feedback, and social reinforcement during the teaching of FRT. The findings indicated that the systematic integration of behavioral techniques with FRT significantly increased the proficiency of the treatment group from a mean percentage correct performance of 15% during baseline to 92% during the intervention phase. The results also demonstrated a significantly greater long-term adherence to proper technique by the treatment group (97% correct performance) in contrast to the comparison group (65% correct performance). The findings suggest the potential of the systematic implementation of behavioral techniques in FRT to enhance health care delivery for this chronic disorder.

Key words: Therapeutic adherence; hemophilia; factor replacement therapy; behavioral assessment.


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