No abstract

BackgroundEffectiveness of the donation request is generally measured by consent rates, rather than by relatives’ satisfaction with their decision. Our aim was to elicit Dutch ICU staffs’ views and experiences with the donation request, to investigate their awareness of (dis)satisfaction with donation decisions by relatives, specifically in the case of refusal, and to collect advice that may leave more relatives satisfied with their decision.MethodsFive focus groups with a total of 32 participants (IC physicians, IC nurses and transplant coordinators) from five university hospitals in the Netherlands. Transcripts were examined using standard qualitative methods.ResultsFour themes (donation request perceived by ICU staff from the perspective of relatives; donation request perceived by ICU staff from their own perspective; aftercare; donation in society) divided into 14 categories were identified.According to ICU staff, relatives mentioned their own values more frequently than values of the potential donor as important for the decision. ICU staff observed this imbalance, but reacted empathically to the relatives’ point of view. ICU staff rarely suggested reconsideration of refusal and did not ask relatives for arguments.ICU staff did not always feel comfortable with a request in the delicate context of brain death. Sometimes the interests of patient, relatives and those on the waiting list were irreconcilable.ICU staff were mostly unaware of relatives’ regret following their decisions. Aftercare did not provide this type of information.Donation request by IC physicians was influenced by the way organ donation has been regulated in society (law, donor register, education, media).ConclusionsOur findings lead to the hypothesis that giving relatives more time and inviting them to reconsider their initial refusal will lead to a more stable decision and possibly more consent.

Genetically-characterising full-length HIV-1 RNA is critical for identifying genetically-intact genomes, and comparing these RNA genomes to proviral DNA. We have developed a method for sequencing plasma-derived RNA using long-range sequencing (PRLS assay; ∼8.3 kb from gag to the 3’, or ∼5 kb from integrase to the 3’ end). We employed the gag -3’ PRLS assay to sequence HIV-1 RNA genomes from ART-naïve participants during acute/early infection (n=6) or chronic infection (n=2). On average only 65% of plasma-derived genomes were genetically-intact. Defects were found in all genomic regions, but were concentrated in env and pol . We compared these genomes to near-full-length proviral sequences from paired PBMC samples for the acute/early group, and found that near-identical (>99.98% identical) sequences were identified only during acute infection. For three participants who initiated therapy during acute infection, we used the int -3’ PRLS assay to sequence plasma-derived genomes from an analytical treatment interruption, and identified 100% identical genomes between pre-therapy and rebound timepoints. The PRLS assay provides a new level of sensitivity for understanding the genetic composition of plasma-derived HIV-1 RNA from viremic individuals either pre-therapy or after treatment interruption, which will be invaluable in assessing possible HIV-1 curative strategies. Importance: We developed novel plasma-derived RNA using long-range sequencing assays (PRLS assay; gag -3’ 8.3 kb and int -3’ 5.0 kb). Employing the gag -3’ PRLS assay, we found that 26-51% of plasma-derived genomes are genetically-defective, largely as a result of frameshift mutations and deletions. These genetic defects were concentrated in the env region compared to gag and pol , likely a reflection of viral immune escape in env during untreated HIV-1 infection. Employing the int -3’ PRLS assay, we found that analytical treatment interruption (ATI) plasma-derived sequences were identical and genetically-intact. Several sequences from the ATI plasma samples were identical to viral sequences from pre-therapy plasma and PBMC samples, indicating that HIV-1 reservoirs established prior to therapy contribute to viral rebound during an ATI. Therefore, near-full-length sequencing of HIV-1 particles is required to gain an accurate picture of the genetic landscape of plasma HIV-1 virions in studies of HIV-1 replication and persistence.

Among Dutch healthcare professionals, it is not a foregone conclusion that conversations with patients should be recorded electronically. This article first describes the discussion among patients about the pros and cons of electronic medical records (EMR). The authors then discuss the Dutch and European legislators’ requirements for the protection of patients’ privacy and therefore of their stories and how these requirements work out in the practice of EMR. The third section is devoted to the question of why spiritual caregivers should record their conversations with patients. The authors put forward various arguments for this. In their view, charting appears to serve both the interests of patients and those of the healthcare providers and of the spiritual care professionals themselves. The authors then describe various possible methods of registration, including G. Fitchett’s model in an adapted, more secular form. By means of two case descriptions, one fairly extensive and one more concise, they show how registration takes place in practice at the Radboud University Medical Center in Nijmegen, Netherlands. The article concludes with the formulation of a plan and goals for the near future.