Introduction: Gastroenteropancreatic neuroendocrine neoplasms (GEPNENs) are often diagnosed in an advanced stage. As the optimal sequence of therapy remains largely unclear, all treatment-related outcomes, including health-related quality of life (HRQoL) prospects, should be assessed according to patients' preferences. Methods: A targeted search was performed in PubMed and EMBASE to identify studies on treatment effect and HRQoL, measured using the EORTC QLQ-C30 tool, in patients with advanced, well-differentiated GEPNENs. Study quality was assessed, and meta-analyses were performed for global health status/QOL and tumour response. Results: The search yielded 1,322 records, and 20 studies were included, examining somatostatin analogues (SSA), peptide receptor radionuclide therapies (PRRT), chemotherapy, SSA-based combination therapies, and targeted therapies. Global HRQoL was stable, and rates for disease stabilisation were moderate to high across all treatments. Meta-analyses for global health status/QOL after SSA treatment were not significant (mean difference: –0.3 [95% CI: −1.3 to 0.7]). The highest pooled overall tumour response rate was 33% (95% CI: 24–45%) for PRRT. The highest pooled clinical benefit rate was 94% (95% CI: 65–99%) for chemotherapy. Conclusion: All treatments appeared beneficial for disease stabilisation while maintaining stable global health status/QOL. High-quality HRQoL reporting was lacking. HRQoL should be a central outcome next to well-established outcomes.
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Emergency care (from ambulance to emergency room) is focused on somatic care: fixing the body. When a patient with mental dysregulation who experiences ‘disproportionate feelings like fear, anger, sadness or confusion, possibly with associated behaviours’ (Van de Glind et al. 2023) does not get appropriate attention, this can result in the disruption of treatment and even psychological trauma upon trauma. To improve the emergency care process, the authors of this paper - health researchers and design researchers engaged in a project based on the experience-based co-design (EBCD) approach (Donetto et al. 2015; Bate and Robert 2007). EBCD is a method used to design better experiences in healthcare settings, in cooperation with (former) patients and healthcare professionals. The process of EBCD involves partnerships between stakeholders and the discovery and sensemaking of experiences through specialized methods to gain an understanding of the interface between user and service, to design new experiences (Bate and Robert 2007, 31). There is, however, an interesting challenge in bringing patients and care professionals together. In emergency care, patients depend greatly on their healthcare providers. The patients in this study had existing mental vulnerabilities and may have been traumatized by previous visits. We needed to enable these stakeholders to be equal partners with ownership and power, one of the characteristics of co-design in EBCD (Donetto et al. 2015). In this paper, we describe how we adapted and applied the EBCD method, with a focus on creating equal partnerships. We also reflect on the extent of our success and the diBiculties we encountered in attaining this objective.
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