Parent values and preferences underpinning treatment decision making in poor prognosis childhood cancer: a scoping review protocol.
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ABSTRACT: Introduction
Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer.Methods and analysis
The Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries.Ethics and dissemination
Ethical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations.This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f).
SUBMITTER: Pearson H
PROVIDER: S-EPMC8126319 | biostudies-literature |
REPOSITORIES: biostudies-literature
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| S-EPMC5875325 | biostudies-literature
Project description:BackgroundPregnant women with prior venous thromboembolism (VTE) are at risk of recurrence. Low molecular weight heparin (LWMH) reduces the risk of pregnancy-related VTE. LMWH prophylaxis is, however, inconvenient, uncomfortable, costly, medicalizes pregnancy, and may be associated with increased risks of obstetrical bleeding. Further, there is uncertainty in the estimates of both the baseline risk of pregnancy-related recurrent VTE and the effects of antepartum LMWH prophylaxis. The values and treatment preferences of pregnant women, crucial when making recommendations for prophylaxis, are currently unknown. The objective of this study is to address this gap in knowledge.MethodsWe will perform a multi-center cross-sectional interview study in Canada, USA, Norway and Finland. The study population will consist of 100 women with a history of lower extremity deep vein thrombosis (DVT) or pulmonary embolism (PE), and who are either pregnant, planning pregnancy, or may in the future consider pregnancy (women between 18 and 45 years). We will exclude individuals who are on full dose anticoagulation or thromboprophylaxis, who have undergone surgical sterilization, or whose partners have undergone vasectomy. We will determine each participant's willingness to receive LMWH prophylaxis during pregnancy through direct choice exercises based on real life and hypothetical scenarios, preference-elicitation using a visual analog scale ("feeling thermometer"), and a probability trade-off exercise. The primary outcome will be the minimum reduction (threshold) in VTE risk at which women change from declining to accepting LMWH prophylaxis. We will explore possible determinants of this choice, including educational attainment, the characteristics of the women's prior VTE, and prior experience with LMWH. We will determine the utilities that women place on the burden of LMWH prophylaxis, pregnancy-related DVT, pregnancy-related PE and pregnancy-related hemorrhage. We will generate a "personalized decision analysis" using participants' utilities and their personalized risk of recurrent VTE as inputs to a decision analytic model. We will compare the personalized decision analysis to the participant's stated choice.DiscussionThe preferences of pregnant women at risk of VTE with respect to the use of antithrombotic therapy remain unexplored. This research will provide explicit, quantitative expressions of women's valuations of health states related to recurrent VTE and its prevention with LMWH. This information will be crucial for both guideline developers and for clinicians.
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Project description:Background and purpose - There is increasing evidence that several commonly performed surgical procedures provide little advantage over nonoperative treatment, suggesting that doctors may sometimes be inappropriately optimistic about surgical benefit when suggesting treatment for individual patients. We investigated whether attitudes to risk influenced the choice of operative treatment and nonoperative treatment. Methods - 946 Swedish orthopedic surgeons were invited to participate in an online survey. A radiograph of a 4-fragment proximal humeral fracture was presented together with 5 different patient characteristics, and the surgeons could choose between 3 different operative treatments and 1 nonoperative treatment. This was followed by an economic risk-preference test, and then by an instrument designed to measure 6 attitudes to surgery that are thought to be hazardous. We then investigated if choice of non-operative treatment was associated with risk aversion, and thereafter with the other variables, by regression analysis. Results - 388 surgeons responded. Nonoperative treatment for all cases was suggested by 64 of them. There was no significant association between risk aversion and tendency to avoid surgery. However, there was a statistically significant association between suggesting to operate at least 1 of the cases and a "macho" attitude to surgery or resignation regarding the chances of influencing the outcome of surgery. Choosing nonoperative treatment for all cases was associated with long experience as a surgeon. Interpretation - The discrepancy between available evidence for surgery and clinical practice does not appear to be related to risk preference, but relates to hazardous attitudes. It appears that choosing nonoperative treatment requires experience and a feeling that one can make a difference (i.e. a low score for resignation). There is a need for better awareness of available evidence for surgical indications.
| S-EPMC5560206 | biostudies-literature
Project description:BackgroundIn modern neurosurgery, there are often several treatment alternatives, with different risks and benefits. Shared decision-making (SDM) has gained interest during the last decade, although SDM in the neurosurgical field is not widely studied. Therefore, the aim of this scoping review was to present the current landscape of SDM in neurosurgery.MethodsA literature review was carried out in PubMed and Scopus. We used a search strategy based on keywords used in existing literature on SDM in neurosurgery. Full-text, peer-reviewed articles published from 2000 up to the search date February 16, 2021, with patients 18 years and older were included if articles evaluated SDM in neurosurgery from the patient's perspective.ResultsWe identified 22 articles whereof 7 covered vestibular schwannomas, 7 covered spinal surgery, and 4 covered gliomas. The other topics were brain metastases, benign brain lesions, Parkinson's disease and evaluation of neurosurgical care. Different methods were used, with majority using forms, questionnaires, or interviews. Effects of SDM interventions were studied in 6 articles; the remaining articles explored factors influencing patients' decisions or discussed SDM aids.ConclusionSDM is a tool to involve patients in the decision-making process and considers patients' preferences and what the patients find important. This scoping review illustrates the relative lack of SDM in the neurosurgical literature. Even though results indicate potential benefit of SDM, the extent of influence on treatment, outcome, and patient's satisfaction is still unknown. Finally, the use of decision aids may be a meaningful contribution to the SDM process.
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Project description:Advance directives are a sensitive issue among traditional Chinese people, who usually refrain from mentioning this topic until it is imperative. Medical decisions for cancer patients are made by their families, and these decisions might violate patients' personal will.This study aimed to examine the acceptance of advance directives among Chinese cancer patients and their families and patient participation in this procedure and, finally, to analyze the moral risk involved.While 246 patients and their family members refused official discussion of an advance directive, the remaining 166 patients and their families accepted the concept of an advance directive and signed a document agreeing to give up invasive treatment when the anti-cancer treatment was terminated. Of these, only 24 patients participated in the decision making. For 101 patients, anti-cancer therapy was ended prematurely with as many as 37 patients not told about their potential loss of health interests.Participants were 412 adult cancer patients from 9 leading hospitals across China. An advance directive was introduced to the main decision makers for each patient; if they wished to sign it, the advance directive would be systematically discussed. A questionnaire was given to the oncologists in charge of each patient to evaluate the interaction between families and patients, patients' awareness of their disease, and participation in an advance directive.Advance directives were not widely accepted among Chinese cancer patients unless anti-cancer therapy was terminated. Most cancer patients were excluded from the discussion of an advance directive.
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