Parent Reported Outcomes Measure development and implementation in pediatric clinical practice

This thesis focusses on parents of a child with a chronic disease or health condition. The main goals of the research reported in this thesis were 1) to get insight into Parent Reported Outcomes (anxiety, depression, Health-Related Quality of Life and distress), 2) the development of a Parent Reported Outcome Measure (ParROM, a questionnaire) and 3) the use Patient Reported Outcome Measures (PROMs) and ParROMs in clinical practice.
1) Results showed that parents, both mothers and fathers, of a child with a chronic disease are at risk for developing psychosocial problems, compared to parents of healthy children.
2) Therefore, it is important for healthcare professionals to know how parents are doing and whether they need or want support. To screen parental distress and everyday problems in an efficient and reliable way, we developed the Distress Thermometer for Parents (DT-P) and collected Dutch normative data.
3) In the last part of this thesis, implementation and feedback of PROMs and ParROMs in daily clinical practice using the KLIK portal (www.hetklikt.nu) are described.
Healthcare professionals should assess both mothers and fathers on an individual level, structurally monitor their well-being and ask about concrete, everyday problems instead of overall functioning. This could be achieved by implementing ParROMs like the DT-P in pediatric clinical practice. ParROMs can be administered online using the KLIK PROM portal. Using the DT-P, the ultimate goal in supporting parents in pediatrics can be achieved: offering the right interventions at the right time by the right professional.