Understanding the information needs of general practitioners managing a rare genetic disorder (osteogenesis imperfecta).
BACKGROUND
Lack of adequate knowledge is a common problem in medicine, but is a particular problem in a rapidly advancing field like genetics. This study uses the example of a rare genetic disorder (osteogenesis imperfecta) to understand the information needs of primary care physicians (GPs).


OBJECTIVE
To determine whether a knowledge gap is recognised, how GPs currently attempt to overcome it, and what features of an information resource are preferred by GPs.


METHODS
GPs of children affected by osteogenesis imperfecta in and around Greater London were interviewed, using both questionnaire-based semi-structured interview and a qualitatively analysed open-ended discussion. Consultations in both primary and tertiary care settings over a 5-year period were compared.


RESULTS
Problems due to osteogenesis imperfecta were presented to GPs in about one third of consultations with these patients. GPs reported finding such patients difficult to manage due to lack of knowledge. Knowledge from tertiary sources, which was authoritative, accessible and relevant, was preferred, particularly when reasoning was explained. Primary literature and clinical guidelines were not favoured.


CONCLUSIONS
Empirical evidence supports and elaborates theoretical models for provision of clinically useful information. A model for improved information services using authoritative web-based information linked to electronic patient records is suggested.
Zack
Philip
P
Osteogenesis Imperfecta Service, Great Ormond Street Hospital for Children NHS, Trust and Institute of Child Health, London, UK. p.zack@virgin.net
Devile
Catherine
C
Clark
Christine
C
Surtees
Robert
R
D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D002675:Child, Preschool; D004502:Education, Medical, Continuing; D005260:Female; D030342:Genetic Diseases, Inborn / Q000523:psychology / Q000628:therapy*; D005826:Genetics, Medical / Q000193:education; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007255:Information Services / Q000458:organization & administration; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010013:Osteogenesis Imperfecta / Q000523:psychology / Q000628:therapy*; D010821:Physicians, Family / Q000193:education*; D011795:Surveys and Questionnaires