Information needs in parents of children with a rheumatic disease

Incorporating the patient's perspective and expectations into the delivery of health care has become an important indicator of today's quality of medical care. Our aim was consequently to explore the information needs of parents of children with juvenile idiopathic arthritis and other rheumatic diseases.

Cross-sectional, anonymous survey using a purpose-designed questionnaire, which separately assessed sources of information and topics. With respect to sources, we also asked about their degree of helpfulness, and regarding topics, we also asked about further interests (information needs). The questionnaire was sent to 146 families continuously attending our paediatric rheumatology outpatient clinic. The response rate was 79.5%. The mean age of the children was 6.9 +/- 4.3 years, 69% were girls and disease duration averaged 2.6 +/- 4.3 years. Mean Child Health Assessment Questionnaire score as a measure of functional disability was 0.259 (+/-0.45; range 0.0-2.13).

Regarding sources, those with a professional medical background were appreciated, while information from friends and family members, in particular, was not. Overall, parents considered themselves well-informed. Parents had frequently received information on core domains of medical aspects. They described deficits related to psychosocial impact, to (vocational) education and to complementary therapy. However, their interest in further information was high almost irrespective of the amount of prior information.

For further tailored information and support strategies it should be taken into account that even for topics largely covered by usual medical advice, residual interest and information needs of parents remain high.