5 research outputs found
Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relativesâ experiences? A two country survey
Objectives Advance care planning (ACP) is
not systematically performed in Argentina or
Norway. We used the post-bereavement survey
of the ERANet-LAC International Care Of the
Dying Evaluation (CODE) project (2017â2020)
to examine the proportion of relatives who were
offered an ACP conversation, the proportion of
those not offered it who would have wanted
it and whether the outcomes differed between
those offered a conversation and those not.
Methods Relatives after cancer deaths in
hospitals answered the CODE questionnaire 6â
8weeks post bereavement, by post (Norway) or
interview (Argentina). Two additional questions
asked if the relative and patient had been invited
to a conversation about wishes for the patientâs
remaining lifetime, and, if not invited, whether
they would have wanted such a conversation.
The data were analysed using mixed-effects
ordinal regression models.
Results 276 participants (Argentina 98 and
Norway 178) responded (56% spouses, 31%
children, 68%women, age 18â80+). Fifty-
six per cent had been invited, and they had
significantly more positive perceptions about care
and support than those not invited. Sixty-eight
per cent of the participants not invited would
have wanted an invitation, and they had less
favourable perceptions about the care, especially
concerning emotional and spiritual support.
Conclusions Relatives who had been invited
to a conversation about wishes for the patientâs
remaining lifetime had more positive perceptions
about patient care and support for the relatives
in the patientâs final days of life. A majority of
the relatives who had not been invited to an ACP
conversation would have wanted it
Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relativesâ Survey within Seven Countries
Background. Recognized disparities in quality of end-of-life
care exist. Our aim was to assess the quality of care for patients
dying from cancer, as perceived by bereaved relatives, within
hospitals in seven European and South American countries.
Materials and Methods. A postbereavement survey was
conducted by post, interview, or via tablet in Argentina,
Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next
of kin to cancer patients were asked to complete the inter-
national version of the Care Of the Dying Evaluation (i-
CODE) questionnaire 6â8 weeks postbereavement. Pri-
mary outcomes were (a) how frequently the deceased
patient was treated with dignity and respect, and (b) how
well the family member was supported in the patientâs
last days of life.
Results. Of 1,683 potential participants, 914 i-CODE
questionnaires were completed (response rate, 54%).
Approximately 94% reported the doctors treated their fam-
ily member with dignity and respect âalwaysâ or âmost of
the timeâ; similar responses were given about nursing staff
(94%). Additionally, 89% of participants reported they were
adequately supported; this was more likely if the patient
died on a specialist palliative care unit (odds ratio, 6.3; 95%
confidence interval, 2.3â17.8). Although 87% of participants
were told their relative was likely to die, only 63% were
informed about what to expect during the dying phase.
Conclusion. This is the first study assessing quality of care for
dying cancer patients from the bereaved relativesâ perspective
across several countries on two continents. Our findings suggest
many elements of good care were practiced but improvement in
communication with relatives of imminently dying patients is
needed. (ClinicalTrials.gov Identifier: NCT03566732)
Assessing quality of care for the dying from the bereaved relativesâ perspective: Using pre- testing survey methods across seven countries to develop an international outcome measure
Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to
evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives.
Aim: The aim of this study is to translate and pre-test the âCare Of the Dying Evaluationâ (CODETM) questionnaire across seven
participating countries prior to conducting an evaluation of current quality of care.
Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing
using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group
technique to establish a common, core international version of CODE.
Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by
purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive
interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured
consensus meeting held to determine content of international CODE (i-CODE) questionnaire.
Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages.
No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be
culturally appropriate.
Conclusion: Patient and public involvement and bereaved relativesâ perceptions helped enhance the face and content validity of
i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying
Common and Rare Sequence Variants Influencing Tumor Biomarkers in Blood.
To access publisher's full text version of this article click on the hyperlink belowBackground: Alpha-fetoprotein (AFP), cancer antigens 15.3, 19.9, and 125, carcinoembryonic antigen, and alkaline phosphatase (ALP) are widely measured in attempts to detect cancer and to monitor treatment response. However, due to lack of sensitivity and specificity, their utility is debated. The serum levels of these markers are affected by a number of nonmalignant factors, including genotype. Thus, it may be possible to improve both sensitivity and specificity by adjusting test results for genetic effects.
Methods: We performed genome-wide association studies of serum levels of AFP (N = 22,686), carcinoembryonic antigen (N = 22,309), cancer antigens 15.3 (N = 7,107), 19.9 (N = 9,945), and 125 (N = 9,824), and ALP (N = 162,774). We also examined the correlations between levels of these biomarkers and the presence of cancer, using data from a nationwide cancer registry.
Results: We report a total of 84 associations of 79 sequence variants with levels of the six biomarkers, explaining between 2.3% and 42.3% of the phenotypic variance. Among the 79 variants, 22 are cis (in- or near the gene encoding the biomarker), 18 have minor allele frequency less than 1%, 31 are coding variants, and 7 are associated with gene expression in whole blood. We also find multiple conditions associated with higher biomarker levels.
Conclusions: Our results provide insights into the genetic contribution to diversity in concentration of tumor biomarkers in blood.
Impact: Genetic correction of biomarker values could improve prediction algorithms and decision-making based on these biomarkers.United States Department of Health & Human Services
National Institutes of Health (NIH) - USA
NIH National Institute of Dental & Craniofacial Research (NIDCR
Nusinersen versus Sham Control in Later-Onset Spinal Muscular Atrophy
International audienceBACKGROUND Nusinersen is an antisense oligonucleotide drug that modulates pre-messenger RNA splicing of the survival motor neuron 2 (SMN2) gene. It has been developed for the treatment of spinal muscular atrophy (SMA). METHODS We conducted a multicenter, double-blind, sham-controlled, phase 3 trial of nusinersen in 126 children with SMA who had symptom onset after 6 months of age. The children were randomly assigned, in a 2: 1 ratio, to undergo intrathecal administration of nusinersen at a dose of 12 mg (nusinersen group) or a sham procedure (control group) on days 1, 29, 85, and 274. The primary end point was the least-squares mean change from baseline in the Hammersmith Functional Motor Scale-Expanded (HFMSE) score at 15 months of treatment; HFMSE scores range from 0 to 66, with higher scores indicating better motor function. Secondary end points included the percentage of children with a clinically meaningful increase from baseline in the HFMSE score (>= 3 points), an outcome that indicates improvement in at least two motor skills. RESULTS In the prespecified interim analysis, there was a least-squares mean increase from baseline to month 15 in the HFMSE score in the nusinersen group (by 4.0 points) and a least-squares mean decrease in the control group (by -1.9 points), with a significant between-group difference favoring nusinersen (least-squares mean difference in change, 5.9 points; 95% confidence interval, 3.7 to 8.1; P< 0.001). This result prompted early termination of the trial. Results of the final analysis were consistent with results of the interim analysis. In the final analysis, 57% of the children in the nusinersen group as compared with 26% in the control group had an increase from baseline to month 15 in the HFMSE score of at least 3 points (P< 0.001), and the overall incidence of adverse events was similar in the nusinersen group and the control group (93% and 100%, respectively). CONCLUSIONS Among children with later-onset SMA, those who received nusinersen had significant and clinically meaningful improvement in motor function as compared with those in the control group. (Funded by Biogen and Ionis Pharmaceuticals; CHERISH ClinicalTrials. gov number, NCT02292537.