Assessing the supportive care needs of parents with a child with a bleeding disorder using the Parental Needs Scale for Rare Diseases (PNS-RD): A single-centre pilot study

Introduction Inherited bleeding disorders are rare, for some such as haemophilia, there is a growing body of evidence about caregiver burden and associated support needs. Whilst for other disorders, which may be present with less clinically significant bleeding, there is a paucity of data about parents support needs. Aims To evaluate the supportive care needs of parents of children with a range of inherited bleeding disorders. Methods A single-centre pilot study using the validated Parental Needs Scale for Rare Diseases to measure the overall support needs of parents of children with a bleeding disorder. Results 231 parents, including 99/231 (42.9%) fathers, completed the survey; half had a bleeding disorder themselves. Parents reported a good understanding of their child's condition, and overall were happy with the care provided by the specialist haemophilia team but reported a lack of knowledge in non-specialist settings. More than half of parents reported experiencing significant emotional issues relating to their child's condition. 42.6%-46.7% reported financial concerns related to paying for medical care and respite, respectively. Conclusion Overall, parents are confident about dealing with their child's bleeding disorder and are satisfied with the level of support and care that they and their child are receiving. The emotional and psychological impacts of having a child with a bleeding disorder remain a significant burden for many parents. The financial costs associated with caring for their child further impact on their ability to cope. Regular assessment of parental support needs should be part of routine clinical care.