Research priority setting activities in paediatric chronic disease cover many discipline areas and have elicited a broad range of topics. However, child/caregiver involvement is uncommon, and the methods often lack clarity. A systematic and explicit process that involves patients and families in partnership may help to inform a more patient and family-relevant research agenda in paediatric chronic disease.

BackgroundChronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.ObjectiveTo identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.SettingAn Australian paediatric hospital and health consumer organisations.MethodsRecruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed.ResultsSeventy-eight research questions were identified. Five themes underpinned participants’ priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services).ConclusionResearch priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.

Background Caesarean scar pregnancy is an uncommon form of ectopic pregnancy characterized by implantation into the site of a caesarean scar. Common clinical features include vaginal bleeding and abdominal pain; however, a significant proportion of cases are asymptomatic. The primary diagnostic modality is transvaginal ultrasound. There is no current consensus on best-practice management. Case presentation A 36-year-old woman, G7P2, presented to an early-pregnancy service with vaginal spotting and an ultrasound scan demonstrating a live caesarean scar ectopic pregnancy at 8 + 5 weeks' gestation. On examination she was hemodynamically stable with a soft abdomen. She was advised to have dilation and curettage (D&C) under ultrasound guidance; however, she was concerned that she might require more extensive surgery, such as a hysterectomy and so requested non-surgical management. On day 1 she underwent ultrasound-guided embryocide with lignocaine followed by inpatient multi-dose systemic methotrexate. Her beta-human gonadotrophic hormone level decreased. Repeat ultrasound on day 18 demonstrated a persistent caesarean scar ectopic pregnancy with increased vascularity, and so uterine artery embolization (UAE) was performed with a view to D&C the following day. This plan was altered to expectant management with ongoing follow-up by a different clinician who had had previous success with UAE alone. On day 35 the patient presented with life-threatening vaginal bleeding that required an emergency total abdominal hysterectomy. Conclusions Caesarean scar pregnancies are uncommon. Multiple treatment strategies have been employed, with variable degrees of success. Further research into risk stratification and management are needed to guide clinician and patient decision making.

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