Perceived first contact care for disabled children.

Area of Science:

• Pediatric Healthcare
• Chronic Illness Management
• Healthcare Access

Background:

• Families of children with myelodysplastic syndromes (MDS) often face challenges accessing specialized care.
• Geographic distance and healthcare provider perceptions influence care-seeking behaviors.

Purpose of the Study:

• To investigate care-seeking preferences of mothers for various health issues in children with MDS.
• To compare these preferences with the recommendations of local physicians and clinic staff.

Main Methods:

• Mail-back questionnaire survey of 169 mothers of children with MDS.
• Surveys administered to 91 local physicians and 27 clinic staff members.
• Assessment of preferences for 24 distinct health-related problems.

Main Results:

• Mothers' first contact choices were influenced by child's condition severity, hospitalization history, and travel time.
• Clinic staff preferred self-referral, contrasting with the clinic's policy of community resource utilization.
• Local physicians favored self-referral, aligning with primary care principles for chronically disabled children.

Conclusions:

• Care-seeking behaviors for pediatric MDS are complex, involving patient, provider, and logistical factors.
• Discrepancies exist between clinic policies, patient preferences, and provider recommendations.
• Optimizing care coordination requires understanding and addressing these differing perspectives.