Disease impact and disease-unrelated strain in parents of children with rheumatic disease: is there an influence on disease-related information needs?

OBJECTIVE

To explore the information needs of parents of children with juvenile idiopathic arthritis and other rheumatic diseases with emphasis on possible intervening factors, such as disease-related or disease-unrelated strain.

METHODS

A cross-sectional, anonymous survey using a purpose-designed questionnaire, incorporating, among others, the Impact on Family Scale. The questionnaire was sent to 146 families continuously attending a pediatric rheumatology outpatient clinic. The response rate was 80%. The mean age of the children was 6.9 (± 4.3) years. Mean CHAQ score was 0.259 (± 0.45; range 0.0 to 2.13).

RESULTS

Parents considered themselves well-informed. They frequently mentioned having 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. Unexpectedly, neither disease impact on the family nor the presence and number of disease-unrelated life events seemed to have an influence (positive or negative) on the parents' information needs.

CONCLUSION

With respect to individually tailored information strategies, it should be taken into account that even for topics largely covered by usual medical advice, residual interest and information needs remain high. We were furthermore able to ascertain topics of particular interest but failed to substantiate our clinical impression that families who feel burdened with disease-related and or disease-unrelated stressors are less likely to be interested in further disease-related information.