Health-care use and information needs of children with neonatal brachial plexus palsy: A cross-sectional survey among 465 Dutch patients

Abstract

To investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents seen in our NBPP clinic were invited to complete a survey comprising questions on HCU due to NBPP and current information needs. Outcomes were described for three age-groups (0-1/2-9/10-18 years), based on follow-up status (early/late/no-discharge). Four hundred sixty-five parents/patients participated (59 in the 0-1, 226 in the 2-9, and 180 in the 10-18-year group). Two hundred ninety-three patients had C5-C6 lesions, 193 were discharged from follow-up, 83 of whom categorized as 'early discharged' (<1 year of age). Over the past year, 198 patients had contact with the expert team (49 in the 0-1, 81 in the 2-9, and 68 in the 10-18-year group) and 288 with at least one other health-care professional (53 in the 0-1, 133 in the 2-9, and 102 in the 10-18-year group). Of the 83 patients discharged early, 34 reported health-care use. Two hundred twentyeight participants reported current information needs of whom 23 were discharged early. HCU and information needs of Dutch children with NBPP remains considerable even in children who were discharged. Stricter follow-up and information provision for these patients is needed.

Demographics and deprivation in obstetric brachial plexus palsy: a retrospective cohort study

“…Of patients, 10% presented with Horner's syndrome, which is associated with severe nerve injury (Narakas group IV) and is a predictor for microsurgical intervention (Al-Qattan et al, 2000;Huang et al, 2008;Shah et al, 2019). The relatively high incidence of Horner's syndrome (10%) in this cohort of patients with OBPP is similar to other reported studies from specialist centres confirming a possible bias toward severe injury in referral patterns (Al-Qattan et al, 2000;Smith et al, 2004) .…”

“…Obstetric brachial plexus palsy (OBPP) is rare, with a reported incidence in the UK of 0.42 per 1000 live births (Evans-Jones et al., 2003). However, the social, psychological and economic consequences for those affected with lifelong disabilities and their families are significant (van der Holst et al., 2020; Yau et al., 2018). Although previous literature suggests that most babies recover soon after delivery without long-term problems, more recent publications and expert consensus report that even patients who recover early may have some long-term deficits (Johansson et al., 2019; van der Holst et al., 2020).…”

“…However, the social, psychological and economic consequences for those affected with lifelong disabilities and their families are significant (van der Holst et al., 2020; Yau et al., 2018). Although previous literature suggests that most babies recover soon after delivery without long-term problems, more recent publications and expert consensus report that even patients who recover early may have some long-term deficits (Johansson et al., 2019; van der Holst et al., 2020). There are also socioeconomic and health economic implications, supported by published evidence describing the long-term usage of healthcare providers by these patients (Johansson et al., 2019; van der Holst et al., 2020).…”

Using parent metaphors for learning about the neonatal care experience: An interpretive perspective

“…More recently, Beck (2017) explored the metaphors used by parents of babies born with obstetric brachial plexus injury specifically. While research has highlighted significant information needs in parents of babies with this condition (van der Holst et al (2018), conversely, it was found that metaphors assisted mothers to express what they could not verbalise using medical terminology, providing useful insight for staff in understanding their perspectives. Again, while this study did not focus on prematurity, a powerful ‘dagger in the heart’ metaphor summarises the depth and intensity of emotion expressed by these mothers caring for a baby with a specific physical condition.…”