ObjectivesCraniosynostosis is typically diagnosed and surgically corrected within the first year of life. The diagnosis and surgical correction of the condition can be a very stressful experience for families. Despite this, there is little research exploring the impact that craniosynostosis has on families, especially in the period immediately following diagnosis and correction. In this study, the authors aimed to qualitatively examine the psychosocial experience of families with a child diagnosed with craniosynostosis.DesignQualitative study.SettingTertiary care paediatric health centre.ParticipantsMothers of children newly diagnosed with single-suture, non-syndromic craniosynostosis.InterventionSemistructured interviews regarding parental experience with the initial diagnosis, their decision on corrective surgery for their child, the operative experience, the impact of craniosynostosis on the family and the challenges they encountered throughout their journey.Primary and secondary outcome measuresThematic analysis, a type of qualitative analysis that provides an in-depth account of participant’s experiences, was used to analyse the interview data.ResultsOver a 4-year period, 12 families meeting eligibility criteria completed the study. Three main themes (six subthemes) emerged from the preoperative interviews: frustration with diagnostic delays (parental intuition and advocacy, hope for improved awareness), understanding what to expect (healthcare supports, interest in connecting with other families) and justifying the need for corrective surgery (influence of the surgeon, struggle with cosmetic indications). Two main themes (four subthemes) were drawn from the postoperative interviews: overcoming fear (the role of healthcare professionals, transition home) and relief (reduction in parental anxiety, cosmetic improvements).ConclusionsOverall, the diagnosis of craniosynostosis has a profound impact on families, leading them to face many struggles throughout their journey. A better understanding of these experiences will help to inform future practice, with a hope to improve this experience for other families moving forward.

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Background Diagnostic delays in pediatric neuro-oncology is a subject of distress for families and providers. We aimed to evaluate the symptom diagnostic interval (SDI) and influencing variables for children with CNS tumors. Methods This retrospective study analyzed 210 patients diagnosed from 2001–2018 and managed at the tertiary care facility in Halifax, Canada. SDI was defined as time from first symptom until tissue diagnosis or, if not available, imaging diagnosis. Non-parametric tests were used to compare SDI between groups. Results Median SDI was 12.4 weeks (IQR 4.3–30), longer than 7 other studies of 1308 children reporting medians of 4.5–10 weeks (p < 0.01). Most common tumors and their median SDI included low-grade glioma (LGG) (n=97, 46%; 17.9 weeks), medulloblastoma (n=31, 15%; 8.7 weeks), high-grade glioma (HGG) and DIPG (n=23, 11%; 5.6 weeks), and ependymoma (n=13, 6%; 13.6 weeks). The most common initial reported symptom included headache (n=63; 30%), nausea/vomiting (n=27, 18%), seizure (n=24, 12%), and visual impairment (n=13, 6.3%). Patients aged 0–3 years had a shorter SDI than patients 10 years and older (SDI 8.7 vs 14.6 weeks; p = 0.03). Tumor category showed longer SDI for LGG versus HGG (p = 0.003), DIPG (p = 0.02), medulloblastoma (p = 0.03) and other embryonal tumors (p = 0.03). Longer SDI was not associated with increased risk of disease progression for LGG (p = 0.93), medulloblastoma (p = 0.89), or ependymoma (p = 0.5). No difference in SDI was found with regard to diagnosis era, ethnicity, socioeconomic status, or distance to the tertiary care facility. Conclusion SDI at our centre is longer than previously reported studies. SDI is linked to tumor biology and its relevance within specific tumor groups deserves further investigation given it doesn’t appear to predict tumor progression/recurrence, yet families and providers feel distress when delays in diagnosis are perceived.