Bleeding episodes, chronic pain, and the presence of inhibitors in children with hemophilia cause emotional stress for caregivers and increase their burden, according to an European study that recommended early access to support services.
Caring for a child with hemophilia, particularly when coping with poor joint health, leads to emotional stress, a changed perception of the child, and the need for more medical management, the study said. Researchers recommended early access to psychosocial support services to help caregivers.
The study, “The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study),” was published in the journal Haemophilia.
“Almost from the time of their child’s diagnosis, parents of children with hemophilia face additional stresses such as bleed recognition, treatment, including pain management and uncertainty about the future,” the researchers wrote, adding that healthcare professionals “are known to have poor recognition and understanding of pain management” in children with hemophilia.
The burden of caring for a child with a chronic disease, like asthma, diabetes, cancer, or cystic fibrosis, has been studied. But there is little data about the impact on those caring for children with a bleeding disorder.
Researchers conducted a study — the Burden of Bleeds in Caregivers (BBC) — to measure the burden caused by hemophilia on caregivers of children across Europe with this disease. They also looked at clinical variables with the greatest impact on the caregivers’ burden.
They focused on the difficulties parents feel when dealing with their child’s bleeds, a time they say is marked by a “loss of control and additional stress,” particularly when hospital visits are required.
A total of 144 caregivers of hemophilia A or hemophilia B patients were surveyed across seven European countries: Germany, Italy, the Netherlands, Poland, Sweden, Turkey, and the UK. Caregivers ranked their impressions of burden on a validated, hemophilia-specific, and self-reported scale, called a HEMOCAB questionnaire.
Differences in disease impact were grouped and analyzed according to the child’s clinical situation, including disease severity, treatment modality, presence of inhibitors (immune reaction to clotting factor concentrates), joint health, and chronic pain.
Greater burden was seen in caregivers of children who had problems in joint health, including joint bleeds in the last 12 months, or reduced mobility. Caring for a child with chronic pain also represented a particularly high overload, the study found.
“Better recognition, assessment and treatment of pain would, therefore, have a twofold impact: on the child himself and on his caregivers,” the researchers said.
Caring for children with inhibitors also created a greater burden, compared with patients without inhibitors, or children who have been treated by immune tolerance therapy. Caregivers of children with inhibitors reported issues, particularly related to “emotional stress.” According to another report, this may happen because these caregivers face more transportation issues and often must make greater personal sacrifices to provide needed care.
Overall, the highest burdens on caregivers of children with chronic pain were related to “perception of child,” “emotional stress” and “medical management”; the lowest was “interaction with the father.”
The researchers said more research focusing on pain, joint health and caregiver burden should be pursued “as emerging therapeutic options such as extended half‐life products and subcutaneous [under-the-skin] injections are used in routine clinical care.”
“Caregivers of children with higher morbidity in terms of chronic pain, presence of inhibitor and joint impairments would benefit from early access to psychosocial support services,” they said.
The study also investigated the psychosocial determinants of the caregiver burden. These results will be reported in a separate publication.