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Quality of life assessment in children commencing home INR self-testing
Sophie Jones1, Paul Monagle, Elizabeth Manias
1Department of Clinical Haematology, Royal Children's Hospital, Australia. sophie.jones@rch.org.au
Insights
Home INR self-testing significantly improved quality of life for parents and families managing children on oral anticoagulant therapy. Children reported satisfaction, though not statistically significant QoL improvements.
Area of Science:
- Pediatric Hematology
- Pharmacology
- Quality of Life Research
Background:
- Oral anticoagulant therapy (OAT) management in children presents challenges, with frequent International Normalized Ratio (INR) testing being burdensome.
- Home self-testing (home ST) programs offer a potential solution to mitigate these burdens.
Purpose of the Study:
- To evaluate the impact of a home INR self-testing program on the quality of life (QoL) of children requiring long-term OAT and their families.
- To determine if home ST improves QoL for pediatric patients and their caregivers.
Main Methods:
- A study involving children aged 8-18 years on long-term OAT and their parents.
- Quantitative data collected via validated QoL questionnaires (PAC QL©, PedsQL™, PedsQL FIM™) pre- and post-home ST initiation (6-12 months).
- Qualitative data gathered through open-ended questions; INR results from home testing were also collected.
Main Results:
- 71.3% of children's INRs were within their target therapeutic range.
- Parents reported statistically significant improvements in their own QoL (mean increase 6.9), family QoL (mean increase 8.6), and child's QoL (mean increase 11.1).
- Children did not report statistically significant improvements in their QoL.
Conclusions:
- Home INR self-testing led to significant QoL improvements for parents and enhanced family functioning.
- While children expressed satisfaction with home ST, they did not report significant QoL gains.
- Home ST demonstrates a positive impact on the family unit managing pediatric OAT.
Introduction:
Management of oral anticoagulant therapy (OAT) in children is complex and frequent testing of the International Normalised Ratio (INR) is a significant burden. This study evaluates the impact of a home INR self-testing (home ST) program on the quality of life (QoL) of children and their families. The aim of the study was to determine if participation in a home ST program improves QoL for children requiring long-term OAT and their families.
Materials And Methods:
Children aged eight to 18 years requiring long-term OAT and parents of children participated. Quantitative methods comprised three validated QoL questionnaires; the anticoagulation specific PAC QL©, the PedsQL™ and the PedsQL FIM™. Questionnaires were completed before commencing home ST and 6-12 months later. Qualitative methods consisted of open-ended questions which participants answered when completing the questionnaires for the second time. Results of INRs tested at home were collected.
Results:
Fifty-five parents and 35 children participated. The percentage of time the children's INRs were in their target therapeutic range was 71.3. Parents reported statistically significant improvements in QoL for themselves (mean increase 6.9), their family (mean increase 8.6) and their child (mean increase 11.1) following the commencement of home ST (difference p≤0.003 on all questionnaires). The children did not report a statically significant improvement in QoL.
Conclusion:
Parents reported significant improvement for their child's QoL, their QoL and the families' function following commencement of home ST. Children did not report a significant improvement in their QoL, but clearly identified satisfaction with home ST.
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