Assessment and management of pain in children and adolescents with bleeding disorders: a cross‐sectional study from three haemophilia centres

Rambod, Masoume; Forsyth, Katherine L.; Sharif, Farkhondeh; Khair, Kate

doi:10.1111/hae.12765

Cited by 30 publications

(38 citation statements)

References 27 publications

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“…Pain in children with haemophilia is probably unrecognized and under treated. A recent study revealed that 20.8% of children and adolescents with bleeding disorders suffered from moderate pain most commonly involving joints in a non‐acute bleeding state this may impact on functional ability and HRQoL. In our cohort, 26% of boys reported pain in the Haemo‐QoL SF in the last six months.…”

Section: Discussionmentioning

confidence: 61%

Study of physical function in adolescents with haemophilia: The SO‐FIT study

Khair

Holland²,

Bladen

et al. 2017

Haemophilia

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Section: Discussionmentioning

confidence: 61%

Study of physical function in adolescents with haemophilia: The SO‐FIT study

Khair

Holland²,

Bladen

et al. 2017

Haemophilia

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“…Healthcare professionals are known to have poor recognition and understanding of pain management in children with haemophilia . A recent publication by Tagliaferri et al concurs that pain is under‐recognized and unsatisfactorily addressed, with discrepant clinician and patient views.…”

Section: Discussionmentioning

confidence: 99%

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

et al. 2019

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Introduction Treatment burden for the people with haemophilia has been documented, as has the burden of caring for a child with a common chronic disease such as asthma or diabetes. However, there remains a paucity of data about caregiver burden in haemophilia. Aims The aim of this study was to evaluate the impact of bleeding on caregivers of children with haemophilia. Caregiver burden was stratified by the clinical status of their child. Methods A multinational, non‐interventional study of caregivers of children with severe or moderate haemophilia, using the HEMOCABquestionnaire to evaluate caregiver burden. Results A total of 144 caregivers from seven EU countries participated in the study. Differences in caregiver burden were identified based on the clinical situation of the child. Greater burden was seen in caregivers of children who experienced joint bleeding in the preceding 12 months, or had target joints or reduced range of motion in most domains of the HEMOCAB. Caring for a child with a current inhibitor also caused significantly higher burden for caregivers when compared to caring for a child with tolerized inhibitor or without inhibitor. Caregivers of children with chronic pain reported significantly higher burden in all domains of the HEMOCAB except for “interaction with the father.” Conclusion Caregiver burden can be affected by the child's haemophilia status, particularly if joint health is impacted (eg bleeds, decreased mobility) or if the child suffers from chronic pain which was moderately correlated with joint bleeds.

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“…One likely assumption is that parents of children with current inhibitors might report even higher scores of the HEMOCAB. However, children with past inhibitors could have target joints and chronic pain (Rambod, Forsyth, Sharif, & Khair, ; Vulpen, Holstein, & Martinoli, ) which may increase the burden for the parent (DeKoven, Karkare, Lee, et al, ).…”

Section: Discussionmentioning

confidence: 99%

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Westesson

Sparud-Lundin

Baghaei

et al. 2019

Journal of Clinical Nursing

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Aims and objectives To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this. Background Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents. Design A multicentre, cross‐sectional study. Methods Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5‐point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process. Results Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self‐infused, had another family member with haemophilia or if the parent had more children. Conclusions Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity. Relevance to clinical practice More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists.

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Assessment and management of pain in children and adolescents with bleeding disorders: a cross‐sectional study from three haemophilia centres

Cited by 30 publications

References 27 publications

Study of physical function in adolescents with haemophilia: The SO‐FIT study

Study of physical function in adolescents with haemophilia: The SO‐FIT study

The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

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