16 research outputs found
Metal-macrofauna interactions determine microbial community structure and function in copper contaminated sediments
Peer reviewedPublisher PD
ETFDH mutations as a major cause of riboflavin-responsive multiple acyl-CoA dehydrogenation deficiency
Clinical features, molecular heterogeneity, and prognostic implications in <em>YARS2</em>-related mitochondrial myopathy
Recontacting in clinical practice: the views and expectations of patients in the United Kingdom
This is the author accepted manuscript. The final version is available from Springer Nature via the DOI in this record.This paper explores the views and expectations of patients concerning recontacting in clinical practice. It is based on 41 semi-structured interviews conducted in the UK. The sample comprised patients or parents of patients: without a diagnosis; recently offered a test for a condition or carrier risk; with a rare condition; with a Variant of Unknown Significance (VUS) â some of whom had been recontacted. Participants were recruited both via the National Health Service (NHS) and through online, condition-specific support groups.
Most respondents viewed recontacting as desirable, however there were different opinions and expectations about what type of new information should trigger recontacting. An awareness of the potential psychological impact of receiving new information led some to suggest that recontacting should be planned, and tailored to the nature of the new information and the specific situation of patients and families.
The lack of clarity about lines of responsibility for recontacting and perceptions of resource constraints in the NHS tended to mitigate respondentsâ favorable positions towards recontacting and their preferences. Some respondents argued that recontacting could have a preventative value and reduce the cost of healthcare. Others challenged the idea that resources should be used to implement formalized recontacting systems â via arguments that there are âmore pressingâ public health priorities, and for the need for healthcare services to offer care to new patients.The project is funded by the Economic and Social Research Council of the United Kingdom (grant reference: ES/L002868/1)