Abstract:Osteoporosis is one of the most prevalent skeletal disorders and has enormous public health consequences due to the morbidity and mortality of the resulting fractures. This article discusses the developmental origins of osteoporosis and outlines some of the modifiable and non-modifiable risk factors in both intrauterine and postnatal life that contribute to the later onset of osteoporosis. Evidence for the effects of birth size and early growth in both preterm and term born infants are discussed and the role of epigenetics within the programming hypothesis is highlighted. This review provides compelling evidence for the developmental origins of osteoporosis and highlights the importance of osteoporosis prevention at all stages of the life course.
Background: Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered. Aim: To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development. Design: A qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients ( n = 10) and family caregivers ( n = 4). Thematic analysis was underpinned by a constructivist approach. Setting/participants: All patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one month after infusion and follow-up post-treatment (5–18 months). Results: Identified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist – an expert, consistent point of contact – was essential. Conclusion: Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.
health care record) and key themes (e.g. need for clinician education & communication skills, executive leadership and dedicated people & systems resource). A targeted QI strategy includes coordinated communication 'do not attempt resuscitate' pathways between care settings, dedicated training resource for rolling clinician education, fit-for-purpose documentation of treatment escalation considerations and a public awareness campaign. Conclusion(s)The detailed exploration of EoLDM across the region has resulted in a targeted QI strategy. It acts as a springboard for future work to normalise EoLDM. Our vision is that everyone in North Wales can have discussions to support their EoL decision-making at the right time supported by skilled clinicians. Fit-for-purpose pathways and documentation should ensure decisions and preferences are acted upon, within a robust governance framework. Only by learning from one another have we been able to grow together for the people of North Wales.
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