Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

Limperg, Perrine F.; Joosten, Mala M. H.; Fijnvandraat, Karin; Peters, Marjolein; Grootenhuis, Martha A.; Haverman, Lotte

doi:10.1111/hae.13420

Cited by 16 publications

(28 citation statements)

References 46 publications

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“…Furthermore, our data demonstrated that unplanned hospital visits interfered with school events and tended to limit meetings with friends. These social contacts provide the opportunity to enhance HRQOL . Neck and shoulder pain appeared to be a particular indicator of a low psychological state, although it remained unclear if the symptoms were due to haemorrhage.…”

Section: Discussionmentioning

confidence: 99%

“…These social contacts provide the opportunity to enhance HRQOL. 34 Neck and shoulder pain appeared to be a particular indicator of a low psychological state, although it remained unclear if the symptoms were due to haemorrhage. In contrast, bleeding into the knee, ankle and elbow joints, which is known to be a major feature in severe haemophilia, was not significantly associated with any HRQOL dimension, including physical and psychological states (data not shown).…”

Section: Discussionmentioning

confidence: 99%

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Assessment of self‐/parent‐reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN‐52

et al. 2020

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Introduction Assessing health‐related quality of life (HRQOL) is critical for providing comprehensive clinical care to patients with haemophilia. HRQOL in individuals with similar cultural backgrounds should be compared using internationally standardized, generic questionnaires. Aim To evaluate self‐/parent‐assessed HRQOL in Japanese children and adolescents with haemophilia A or B. Methods Children and adolescents aged 8‐18 years were enrolled. The haemophilia group comprised families with haemophilia, and the control group comprised those without chronic illness. HRQOL was assessed using the self‐/parent‐reported questionnaire KIDSCREEN‐52, the Japanese version. The Oslo 3‐Item Social Support Scale was investigated. Results The questionnaire was completed by 36 families in the haemophilia group and 160 parents and children in the control group. Haemophilia children aged 8‐12 years had lower scores for ‘moods and emotions’ than control children; the parents had lower scores in the haemophilia group than in the control group for ‘moods and emotions’, ‘social support and peers’, and ‘school environment’. No significant differences in HRQOL were observed between both groups of adolescents aged 13‐18 years or their parents. Neck‐shoulder pain was associated with a low psychological state, including ‘self‐perception’, but other joint pains did not affect the outcomes of the HRQOL indices. Social support weaknesses were associated with low physical and psychological states, whereas unexpected hospital visits identified low values for ‘self‐perception’, ‘autonomy’, and ‘school environment’. Conclusion Proactive mental and clinical care in haemophilia families, especially with young children, will foster a better environment for patients and their parents and ease concerns about progress in haemophilia.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Assessment of self‐/parent‐reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN‐52

et al. 2020

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“…HMB has negative impact on the quality of life in WBD, impairing their daily activities and social life 6,7 . The health‐related quality of life (HRQoL) in 13 years old girls with a bleeding disorder is lower compared to their healthy peers 8 . In contrast, there is no apparent difference in psychosocial functioning and HRQoL between young adult women with a bleeding disorder compared to peers 9 .…”

Section: Casementioning

confidence: 99%

Managing women‐specific bleeding in inherited bleeding disorders: A multidisciplinary approach

Mauser‐Bunschoten

Kadir

Laan³

et al. 2020

Haemophilia

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Introduction Multidisciplinary management of women‐specific bleeding is important to preserve quality of life, healthy reproduction and social participation of women and girls with bleeding disorders (WBD). Aim To support appropriate multidisciplinary care for WBD in haemophilia treatment centres. Methods Two case examples are presented and management issues discussed from different health care perspectives, including the nurse, patient, psychologist, gynaecologist, geneticist, psychosexual therapist and haematologist. Results Woman with bleeding disorders may experience heavy menstruation from menarche onwards. This has a physical and psychosocial impact requiring a multidisciplinary approach. If a woman with an inherited bleeding disorder desires to become pregnant, preconception counselling is essential, to discuss genetic diagnosis, state of the art treatment options for the bleeding disorder in question and possible choices to prevent having an affected child, as well as maternal bleeding risks during conception, delivery and the post‐partum period. Conclusion Adequate management and good education of WBD requires a patient‐centred multidisciplinary approach with experienced specialists in a haemophilia treatment centre.

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“…Absence from school is an important public health issue as it can lead to lower educational achievement, social difficulties, risk behaviour, school dropout, and ultimately, poor health [1][2][3][4][5][6][7][8]. School absence can be caused by underlying problems of both medical and social origin.…”

Section: Introductionmentioning

confidence: 99%

The prevalence of sickness absence among primary school pupils – reason to be worried?

et al. 2021

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Background Absence from school can lead to lower educational achievement and poor health. Little is known about school absence in primary education. This study’s first aim was to examine the prevalence of school absence in primary schools and differing types of absence, including sickness absence. The second aim was to determine which pupil characteristics and types of absence were associated with extensive sickness absence. Methods The school absence registries for the school year 2015–2016 were analysed retrospectively in eight mainstream primary schools with 2216 pupils, and six schools for special primary education with 1000 pupils in the West-Brabant region of the Netherlands. Descriptive analyses, χ2-tests, Mann-Whitney U tests and logistic regression analyses were performed. Results The one-year prevalence of school absence was 85% in mainstream primary schools and 79% in special schools. Sickness absence was the most prevalent type of absence, occurring in 75 and 71% of pupils, respectively The prevalence of extensive sickness absence was 13 and 23%, respectively. In mainstream schools, extensive sickness absence was associated with a young age, low parental educational level, more doctor’s visits and unauthorised absence, and in special schools with more doctor’s visits, other authorised absence, tardiness and unauthorised absence. Conclusions The prevalence of extensive sickness absence was high, and as this was associated with other types of absence, these pupils missed even more days of school. Public health research, policy and practice should address sickness absence among primary school pupils, to prevent adverse effects on children’s development.

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Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

Abstract: Continuing monitoring HRQOL in daily clinical practice for children with CBD is important, since possible influencing psychosocial factors can change over time, with special focus on adolescent girls, sports participation and school absence.

Cited by 16 publications

References 46 publications

Assessment of self‐/parent‐reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN‐52

Assessment of self‐/parent‐reported quality of life in Japanese children with haemophilia using the Japanese version of KIDSCREEN‐52

Managing women‐specific bleeding in inherited bleeding disorders: A multidisciplinary approach

The prevalence of sickness absence among primary school pupils – reason to be worried?

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