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Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making.

ABSTRACT: Several organizations have underscored the crucial need for patient-centered decision tools to enhance shared decision-making in advanced heart failure. The purpose of this study was to investigate the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement.In-depth, structured interviews with LVAD patients, candidates and caregivers (spouse, family members) (n = 45) were conducted. We also administered a Decisional Regret Scale.Participants reported LVAD decision-making to be quick and reflexive (n = 30), and deferred heavily to clinicians (n = 22). They did not perceive themselves as having a real choice (n = 28). The 2 most prevalent informational domains that participants identified were lifestyle issues (23 items), followed by technical (drive-line, battery) issues (14 items). Participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement (n = 31), and to have an involved caregiver (n = 28) to synthesize information. Some participants demonstrated a lack of clarity regarding transplant probability: 9 of 15 patients described themselves as on a transplant trajectory, yet 7 of these were destination therapy patients. Finally, we found that decisional regret scores were low (1.307).Informed consent and shared-decision making should: (a) help patients offered highly invasive technologies for life-threatening disease get past the initial "anything to avoid thinking about death" reaction and make a more informed decision; (b) clarify transplant status; and (c) focus on lifestyle and technical issues, as patients have the most informational needs in these domains.

SUBMITTER: Blumenthal-Barby JS

PROVIDER: S-EPMC5500175 | biostudies-literature | 2015 Sep

REPOSITORIES: biostudies-literature

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Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making.

Blumenthal-Barby Jennifer S JS Kostick Kristin M KM Delgado Estevan D ED Volk Robert J RJ Kaplan Holland M HM Wilhelms L A LA McCurdy Sheryl A SA Estep Jerry D JD Loebe Matthias M Bruce Courtenay R CR

The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation 20150331 9

<h4>Background</h4>Several organizations have underscored the crucial need for patient-centered decision tools to enhance shared decision-making in advanced heart failure. The purpose of this study was to investigate the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement.<h4>Methods</h4>In-depth, structured interviews with LVAD patients, candidates and caregivers (spouse, family members) (n = 4 ...[more]

PMID: 26087668

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Project description:BACKGROUND/AIMS:Participant understanding is a key element of informed consent for enrollment in research. However, participants often do not understand the nature, risks, benefits, or design of the studies in which they take part. Research on medical practices, which studies standard interventions rather than new treatments, has the potential to be especially confusing to participants because it is embedded within usual clinical care. Our objective in this randomized study was to compare the ability of a range of multimedia informational aids to improve participant understanding in the context of research on medical practices. METHODS:We administered a web-based survey to members of a proprietary online panel sample selected to match national US demographics. Respondents were randomized to one of five arms: four content-equivalent informational aids (animated videos, slideshows with voice-over, comics, and text) and one no-intervention control. We measured knowledge of research on medical practices using a summary knowledge score from 10 questions based on the content of the informational aids. We used analysis of variance and paired t-tests to compare knowledge scores between arms. RESULTS:There were 1500 completed surveys (300 in each arm). Mean knowledge scores were highest for the slideshows with voice-over (65.7%), followed by the animated videos (62.7%), comics (60.7%), text (57.2%), and control (50.3%). Differences between arms were statistically significant except between the slideshows with voice-over and animated videos and between the animated videos and comics. Informational aids that included an audio component (animated videos and slideshows with voice-over) had higher knowledge scores than those without an audio component (64.2% vs 59.0%, p?<?.0001). There was no difference between informational aids with a character-driven story component (animated videos and comics) and those without. CONCLUSION:Our results show that simple multimedia aids that use a dual-channel approach, such as voice-over with visual reinforcement, can improve participant knowledge more effectively than text alone. However, the relatively low knowledge scores suggest that targeted informational aids may be needed to teach some particularly challenging concepts. Nonetheless, our results demonstrate the potential to improve informed consent for research on medical practices using multimedia aids that include simplified language and visual metaphors.

Project description:ImportanceAlopecia areata (AA) is an autoimmune disorder of hair loss with a complex and evolving treatment landscape, making it an ideal setting for shared decision-making (SDM) between patients and physicians. Given the varying efficacy, experience, and risks of treatments for AA, we sought to evaluate patient preferences for SDM and the association of SDM with decisional regret.ObjectiveTo evaluate patient preferences for SDM and the association of SDM with decisional regret.Design, setting, and participantsA cross-sectional online survey using the validated SDMQ9 scale for shared decision-making and Decisional Regret Scale (DRS) was distributed using the National Alopecia Areata Foundation (NAAF) with the aim of assessing (1) patient preferences in SDM when making treatment decisions, (2) how patients perceived the last decision to have been made, (3) which components of SDM were incorporated into the last decision, and (4) decisional regret related to their last treatment decision. The survey was distributed from July 12, 2021, to August 2, 2021, and data analysis occurred from October 2021 to March 2022.Main outcomes and measuresPrimary outcomes included (1) patient preferences in incorporation of SDM, (2) how patients made their most recent treatment decision, (3) which components of SDM were incorporated into their most recent treatment decision measured with the validated SDMQ9, and (4) an assessment of decisional regret in relation to SDM components and the most recent treatment modality used by the patient as measured by the validated DRS.ResultsOf 1387 individuals who initiated the survey, 1074 completed it and were included in the analysis (77.4% completion rate). Overall, 917 respondents were women (85.4%). There were 5 American Indian or Alaska Native respondents (0.5%), 33 were Asian (3.1%), 112 Black or African American (10.4%), 836 White (77.8%), and 36 were multiracial (3.4%) or other (36 [3.4%]). The mean age (SD) was 49.3 (15.4) years. Most respondents preferred making the final treatment decision themselves after considering their physician's opinion (503 [46.8%]). Of those who preferred to make treatment decisions using SDM, most made the last AA treatment decision with their physician (596 [55%]; 95% CI, 53%-58%; P < .001). The components of SDM implemented by the patients' dermatologists most identified were the physician "explained the advantages and disadvantages of treatment options" (472 [44%]), and the physician "asked me which treatment option I prefer" (494 [45.9%]). Incorporation of SDM by physicians was generally associated with decreased decisional regret (all ORs with 95% CIs greater than 1.1; P < .01). The treatments associated with the lowest decisional regret were Janus kinase (JAK) inhibitors, followed by biologics, and deciding not to treat; whereas, the highest decisional regret was reported with anthralin and minoxidil.Conclusions and relevanceThe findings of this cross-sectional survey study suggest that patients with AA prefer to make treatment decisions with their dermatologist using SDM. When SDM is used, patients report less decisional regret, indicating that SDM may help improve the patient-reported quality of treatment decisions. Newer, more efficacious therapies such as JAK inhibitors may be related to lower decisional regret. Future studies should seek to devise solutions to implement SDM as the AA treatment landscape continues to evolve.

Project description:BackgroundInformed consent is one of the safeguarding of the patient in medical practice at different standards such as ethical, legal, and administrative purposes. Patient knowledge and perception of informed consent are one of the priority concerns in surgical procedures. Patient knowledge and perception towards informed consent increased patient satisfaction, feeling high power on their determination, and accountability for the management, and facilitated positive treatment outcomes. Despite this, in Ethiopia, there are small-scale primary studies with inconsistent and inconclusive findings. Therefore, this systematic review and meta-analysis study estimated the pooled prevalence of patient knowledge and perception of informed consent and its determinants in Ethiopia.MethodsWe searched major databases such as PubMed, Hinary, MEDLINE, Cochrane Library, EMBASE, Scopus, African Journal Online (AJO), Semantic Scholar, Google Scholar, google, and reference lists. Besides this, University databases in the country were also searched from August 20, 2023, until September 30, 2023,. All published and unpublished studies that report the prevalence of patient knowledge and perception toward informed consent and its associated factors were included. All studies reported in English were included. Studies conducted between January 01, 2015 to September 30, 2023 were included. There are three outcome measurements pooled level of patient knowledge towards informed consent, pooled level of patient perception towards informed consent, and pooled effect that affects patient knowledge of informed consent. Three reviewers (MMM, NK, and YT) independently screened the articles that fulfilled the inclusion criteria to avoid the risk of bias. The studies' quality was appraised using a modified Newcastle-Ottawa Scale (NOS) version.ResultsThe pooled prevalence of appropriate patient knowledge and perception towards informed consent was 32% (95% CI: 21, 43) and 40% (95% CI: 16, 65) respectively. Having formal education 2.69 (95% CI: 1.18, 6.15) and having a history of signed informed consent before 3.65 (95% CI:1.02,13.11) had a statistically significant association with good patient knowledge towards informed consent.ConclusionThe appropriate patient knowledge and perception of informed consent in Ethiopia is low. Formal education and history of signed informed consent were positive factors for appropriate patient knowledge of informed consent in Ethiopia. Physicians, policymakers, and health facility managers should focus on patients without prior experience with signed informed consent and not have formal education to improve patient knowledge towards informed consent. The protocol was registered at Prospero with number CRD42023445409 and is available from: https://www.crd.york.ac.uk/PROSPERO/#myprospero .

Project description:BackgroundThe informed consent process is a vital component of daily medical practice. It involves providing patients with sufficient, accurate, and understandable information to decide on a contemplated therapy. The study aims to evaluate the patient experience and satisfaction with the preoperative informed consent process.MethodsA cross-sectional study was performed on adult women admitted for elective gynecologic surgery in a tertiary training hospital. Participants were recruited on their second postoperative day and were asked to answer a structured questionnaire assessing decisional satisfaction and experience with the informed consent process. Satisfaction was measured using a 6-item Satisfaction with Decision Scale. Knowledge of the surgery and experience with the informed consent were measured using an Informed Consent Questionnaire. Bivariate associations between highly satisfied and not highly satisfied groups were tested using Fisher exact test.ResultsA total of 150 patients were enrolled in the study with a mean age of 44.5 years. The resident-in-charge provided the information and assisted in the documentation of the informed consent in 86.7% and 67.3% of patients, respectively. There was an overall high decisional satisfaction with a mean score of 27.4 and 52.7% of patients strongly agreeing to all statements of the Satisfaction with Decision Scale. The majority of the respondents were informed and acknowledged comprehension of the surgery including its risks, benefits, and alternative treatment options. Knowing the success rate and benefits of the procedure as well as being informed of the need for postoperative catheterization were significantly associated with high satisfaction.ConclusionKnowledge and understanding of the key components of informed consent influence patient satisfaction. The current study highlights the high decisional satisfaction rates of patients who underwent elective gynecologic surgery. Strategies to further improve this patient-physician encounter include the establishment of standard policies on personnel involved, timing, and quality of information given to patients. Patient satisfaction should serve as an indicator of the quality of healthcare rendered and guide for continuous improvement of services.

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Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making.

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Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making.

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