scholarly journals Autonomy Challenges in Epigenetic Risk-Stratified Cancer Screening: How Can Patient Decision Aids Support Informed Consent?

2019 ◽  
Vol 9 (1) ◽  
pp. 14 ◽  
Author(s):  
Maaike Alblas ◽  
Maartje Schermer ◽  
Yvonne Vergouwe ◽  
Ineke Bolt
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Cancer Screening ◽  
Decision Aids ◽  
Treatment Options ◽  
Specific Context ◽  
Patient Decision Aids ◽  
Autonomous Decision ◽  
Patient Decision ◽  
Screening Strategies

Information of an individual's epigenome can be useful in cancer screening to enable personalised decision making on participation, treatment options and further screening strategies. However, adding this information might result in complex risk predictions on multiple diseases, unsolicited findings and information on (past) environmental exposure and behaviour. This complicates informed consent procedures and may impede autonomous decision-making. In this article we investigate and identify the specific features of epigenetic risk-stratified cancer screening that challenge the current informed consent doctrine. Subsequently we describe current and new informed consent models and the principle of respect for autonomy and argue for a specific informed consent model for epigenetic risk-stratified screening programmes. Next, we propose a framework that guides the development of Patient Decision Aids (PDAs) to support informed consent and promote autonomous choices in the specific context of epigenetic cancer screening programmes.

Certified Patient Decision Aids: Solving Persistent Problems with Informed Consent Law

2017 ◽  
Vol 45 (1) ◽  
pp. 12-40 ◽  
Author(s):  
Thaddeus Mason Pope
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Treatment ◽  
Shared Decision Making ◽  
Decision Aids ◽  
Shared Decision ◽  
Legal Doctrine ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
Decision Making Processes

The legal doctrine of informed consent has overwhelmingly failed to assure that the medical treatment patients get is the treatment patients want. This Article describes and defends an ongoing shift toward shared decision making processes incorporating the use of certified patient decision aids.

What Is the Effectiveness of Patient Decision Aids for Cancer-Related Decisions? A Systematic Review Subanalysis

2018 ◽  
pp. 1-13 ◽  
Author(s):  
Kristen McAlpine ◽  
Krystina B. Lewis ◽  
Lyndal J. Trevena ◽  
Dawn Stacey
Keyword(s):  
Decision Making ◽  
Cancer Screening ◽  
Decision Aid ◽  
Weighted Mean Difference ◽  
Decision Aids ◽  
Decision Making Process ◽  
Patient Decision Aid ◽  
Weighted Mean ◽  
Patient Decision Aids ◽  
Patient Decision

Purpose To determine the effectiveness of patient decision aids when used with patients who face cancer-related decisions. Patients and Methods Two reviewers independently screened the 105 trials in the original 2017 Cochrane review to identify eligible trials of patient decision aids across the cancer continuum. Primary outcomes were attributes of the choice and decision-making process. Secondary outcomes were patient behavior and health system effects. A meta-analysis was conducted for similar outcome measures. Results Forty-six trials evaluated patient decision aids for cancer care, including 27 on screening decisions (59%), 12 on treatments (26%), four on genetic testing (9%), and three on prevention (6%). Common decisions were aboutprostate cancer screening (30%), colorectal cancer screening (22%), breast cancer treatment (13%), and prostate cancer treatment (9%). Compared with the control groups (usual care or alternative interventions), the patient decision aid group improved the match between the chosen option and the features that mattered most to the patient as demonstrated by improved knowledge (weighted mean difference, 12.88 of 100; 95% CI, 9.87 to 15.89; 24 trials), accurate risk perception (risk ratio [RR], 1.77; 95% CI, 1.22 to 2.56; six trials), and value-choice agreement (RR, 2.76; 95% CI, 1.57 to 4.84; nine trials). Compared with controls, the patient decision aid group improved the decision-making process with decreased decisional conflict (weighted mean difference, −9.56 of 100; 95% CI, −13.90 to −5.23; 12 trials), reduced clinician-controlled decision making (RR, 0.57; 95% CI, 0.41 to 0.79; eight trials), and fewer patients being indecisive (RR, 0.59; 95% CI, 0.45 to 0.78; nine trials). Conclusion Patient decision aids improve the attributes of the choice made and decision-making process for patients who face cancer-related decisions.

scholarly journals Do Decision Aids Benefit Patients with Chronic Musculoskeletal Pain? A Systematic Review

Pain Medicine ◽  
2019 ◽  
Vol 21 (5) ◽  
pp. 951-969 ◽  
Author(s):  
Emily Bowen ◽  
Rabih Nayfe ◽  
Nathaniel Milburn ◽  
Helen Mayo ◽  
M C Reid ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Musculoskeletal Pain ◽  
Decision Aid ◽  
Decision Aids ◽  
Treatment Options ◽  
Chronic Musculoskeletal Pain ◽  
Patient Decision Aids ◽  
Nonsurgical Management ◽  
Patient Decision

Abstract Objective To review the effect of patient decision aids for adults making treatment decisions regarding the management of chronic musculoskeletal pain. Methods We performed a systematic review of randomized controlled trials of adults using patient decision aids to make treatment decisions for chronic musculoskeletal pain in the outpatient setting. Results Of 477 records screened, 17 met the inclusion criteria. Chronic musculoskeletal pain conditions included osteoarthritis of the hip, knee, or trapeziometacarpal joint and back pain. Thirteen studies evaluated the use of a decision aid for deciding between surgical and nonsurgical management. The remaining four studies evaluated decision aids for nonsurgical treatment options. Outcomes included decision quality, pain, function, and surgery utilization. The effects of decision aids on decision-making outcomes were mixed. Comparing decision aids with usual care, all five studies that examined knowledge scores found improvement in patient knowledge. None of the four studies that evaluated satisfaction with the decision-making process found a difference with use of a decision aid. There was limited and inconsistent data on other decision-related outcomes. Of the eight studies that evaluated surgery utilization, seven found no difference in surgery rates with use of a decision aid. Five studies made comparisons between different types of decision aids, and there was no clearly superior format. Conclusions Decision aids may improve patients’ knowledge about treatment options for chronic musculoskeletal pain but largely did not impact other outcomes. Future efforts should focus on improving the effectiveness of decision aids and incorporating nonpharmacologic and nonsurgical management options.

scholarly journals The Benefits and Challenges of Using Patient Decision Aids to Support Shared Decision Making in Health Care

2018 ◽  
pp. 1-10 ◽  
Author(s):  
Anshu Ankolekar ◽  
Andre Dekker ◽  
Rianne Fijten ◽  
Adriana Berlanga
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aids ◽  
Treatment Options ◽  
Clinical Information ◽  
Shared Decision ◽  
Patient Decision Aids ◽  
Trade Offs ◽  
Patient Decision

Shared decision making (SDM) and patient-centered care require patients to actively participate in the decision-making process. Yet with the increasing number and complexity of cancer treatment options, it can be a challenge for patients to evaluate clinical information and make risk–benefit trade-offs to choose the most appropriate treatment. Clinicians face time constraints and communication challenges, which can further hamper the SDM process. In this article, we review patient decision aids (PDAs) as a means of supporting SDM by presenting clinical information and risk data to patients in a format that is accessible and easy to understand. We outline the benefits and limitations of PDAs as well as the challenges in their development, such as a lengthy and complex development process and implementation obstacles. Lastly, we discuss future trends and how change on multiple levels—PDA developers, clinicians, hospital administrators, and health care insurers—can support the use of PDAs and consequently SDM. Through this multipronged approach, patients can be empowered to take an active role in their health and choose treatments that are in line with their values.

Informed Consent for Organ Transplantation in Older Adults: Are Patient Decision Aids the Solution for Successful Implementation of Shared Decision-Making in Transplant Clinical Practice?

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 82-83
Author(s):  
Alessandra Agnese Grossi ◽  
◽  
Federico Nicoli ◽  
Jacopo Testa ◽  
Mario Picozzi ◽  
...  
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Clinical Practice ◽  
Informed Consent ◽  
Organ Transplantation ◽  
Shared Decision Making ◽  
Decision Aids ◽  
Shared Decision ◽  
Patient Decision Aids ◽  
Patient Decision

"Informed consent (IC) in older adults (≥ 70 years of age) is often complex. This holds even truer in the setting of organ transplantation (OTx), requiring patients to be informed of the risks and benefits associated with multiple options: whether or not to pursue a transplant, to opt for a living – where appropriate – or deceased donor, to consider a variety of choices concerning the potential for poorer organ quality or increased risk of disease transmission and others. IC overlaps with shared decision-making (SDM) in the presence of high-risk procedures, with low levels of certainty, and when two or more treatment alternatives exist. Patient decision aids (PDAs) (i.e. paper-based/electronic evidence-based tools) have been developed to complement and enhance SDM in clinical practice. Studies have proven PDAs to be an effective means to improve transplant knowledge, to foster patient participation, and to diminish decisional conflict across different settings in OTx. However, research is lacking on the effectiveness and appropriateness of these tools in older adults, which are increasingly entitled to receive OTx. The objective of our work is 1) to present the challenges posed by the use of PDAs in this group of patients and 2) to identify gaps so as to inform the agenda for research on this emergent issue. Our findings suggest that future studies should aim to the development, implementation and evaluation of PDAs for the oldest, more vulnerable segments of this specific patient population. "

scholarly journals Protocol for systematic review: patient decision aids for total hip and knee arthroplasty decision-making

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Lissa Pacheco-Brousseau ◽  
Marylène Charette ◽  
Dawn Stacey ◽  
Stéphane Poitras
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Knee Arthroplasty ◽  
Patient Involvement ◽  
Decision Aids ◽  
Risk Of Bias ◽  
Decision Making Process ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
Hip And Knee Arthroplasty

Abstract Background Total hip and knee arthroplasty are a highly performed surgery; however, patient satisfaction with surgery results and patient involvement in the decision-making process remains low. Patient decision aids (PtDAs) are tools used in clinical practices to facilitate active patient involvement in healthcare decision-making. Nonetheless, PtDA effects have not been systematically evaluated for hip and knee total joint arthroplasty (TJA) decision-making. The aim of this systematic review is to determine the effect of patient decision aids compared to alternative of care on quality and process of decision-making when provided to adults with hip and knee osteoarthritis considering primary elective TJA. Methods This systematic review will follow the Cochrane Handbook for Systematic Reviews. This protocol was reported based on the PRISMA-P checklist guidelines. Studies will be searched in CINAHL, MEDLINE, Embase, PsycINFO, and Web of Science. Eligible studies will be randomized control trial (RCT) evaluating the effect of PtDA on TJA decision-making. Descriptive and meta-analysis of outcomes will include decision quality (knowledge and values-based choice), decisional conflict, patient involvement, decision-making process satisfaction, actual decision made, health outcomes, and harm(s). Risk of bias will be evaluated with Cochrane’s risk of bias tool for RCTs. Quality and strength of recommendations will be appraised with Grades of Recommendation, Assessment, Development and Evaluation (GRADE). Discussion This review will provide a summary of RCT findings on PtDA effect on decision-making quality and process of adults with knee and hip osteoarthritis considering primary elective TJA. Further, it will provide evidence comparing different types of PtDA used for TJA decision-making. This review is expected to inform further research on joint replacement decision-making quality and processes and on ways PtDAs facilitate shared decision-making for orthopedic surgery. Systematic review registration PROSPERO CRD42020171334

scholarly journals Patient Decision Aids in Doctor-Patient Consultations: Treatment Decision Making on Starting Insulin

2017 ◽  
Vol 9 (4-2) ◽  
Author(s):  
Zuraidah Mohd Don ◽  
Ayeshah Syed
Keyword(s):  
Decision Making ◽  
Decision Aids ◽  
Treatment Decision ◽  
Information Provision ◽  
Patient Decision Aids ◽  
Demographic Profiles ◽  
Treatment Decision Making ◽  
Healthcare Settings ◽  
Patient Decision

Patient decision aids (PDAs) are increasingly used to support treatment decision making in type 2 diabetes. However, research on PDAs generally involves quantitative analysis or focuses on physicians’ communicative practices, with limited data on how PDAs are used collaboratively in doctor-patient consultations. We apply discourse analytic methods to 11 recorded consultations during which a PDA on starting insulin was used. Purposive sampling was used to select participants from different healthcare settings and demographic profiles. Our analysis first addresses general questions on PDA use in the consultations, such as when it was used or mentioned in the consultation and by whom, before categorising the turns in which the PDA is mentioned or used by doctors and patients, according to the actions being performed. Next, we focus on consultations in which the patients have already read the PDA, and analyse the sequences of talk that occur after the doctor brings the PDA into the conversation. Our analysis shows that doctor talk on the PDA not only facilitated information provision, but also allowed doctors to elicit and explore the patient’s knowledge and perspectives. However, the kinds of questions that doctors asked tend to limit patient participation, and their focus on the PDA at times overshadowed patient contributions. More attention to doctors’ discursive choices can facilitate more patient-centred practices in using PDAs.

scholarly journals Experts' views on the implementation of the prenatal screening decision aid in Iran: A qualitative study

2021 ◽  
Author(s):  
Razieh Zahedi ◽  
Leila Nemati-Anaraki ◽  
Shahram Sedghi ◽  
Mamak Shariat
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Decision Aids ◽  
Personal Factors ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Patient Decision Aids ◽  
Patient Decision

Background & Aim: Patient decision aids are detailed and personalized health education materials that assist patients in decision making. According to expert viewpoints, this study aimed to determine important factors in implementing the prenatal screening decision aid in Iran. Methods & Materials: In this qualitative study, 24 experts, including seven obstetricians, four information scientists, five managers or policymakers, and eight midwives, were selected using purposive and snowball sampling approaches. Semi-structured interviews were conducted to collect the data between January 2020 and June 2020 in Tehran, Iran. A prenatal screening decision aid was presented to the participants, and we asked them to raise their concerns and thoughts regarding the factors influencing the implementation of patient decision aids. We used MAXQDA 10 and applied conventional content analysis for data analysis. Results: Two organizational and personal factors themes were identified to implement Iran's prenatal screening decision aids. Conclusion: We identified the viewpoints of experts regarding major factors in patient decision aids implementation for prenatal screening. Before implementing prenatal screening decision aids in Iran, it would be helpful to consider these organizational and personal factors. Prenatal screening decision aids can provide better information for pregnant women and strengthen their decision-making ability.

Informed Consent for Epidural Analgesia at the Time of Labor Pain, Seems Too Late!

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Bastanhagh E ◽  
◽  
Behseresht A ◽  
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Pain Management ◽  
Epidural Analgesia ◽  
Pain Treatment ◽  
Decision Aids ◽  
Treatment Options ◽  
Labor Pain ◽  
Lumbar Epidural Analgesia ◽  
Decision Making Capacity

Pain in the process of childbirth is the phenomenon mostly feared by every woman in her pregnancy, and is a major cause of dissatisfaction and embarrassing memories of labor. Usage of lumbar epidural analgesia as a very effective pain management option has solved this problem to a great extent, and its utilization has turned to common practice in most of the women hospitals worldwide. The use of lumbar epidural analgesia in labor is widespread due to its benefits in terms of effective pain relief in comparison with other labor pain treatment options [1]. Vaginal delivery is an extremely painful process accompanied with great emotional disturbance, which may not be possible for the laboring mother to focus and concentrate to understand the anesthetist explanations at that moment and sign the epidural analgesia informed consent properly. On one hand, the laboring mother expresses doubts because of uncertainty on her decision and on the other hand she desperately wants to get rid of the excruciating labor pain by any means possible. Therefore, the decision to have a neuraxial analgesia (epidural, combined spinal epidural) sounds obligatory on this condition. Each of these analgesic methods beside desirable effectiveness in pain management may have some side effects and it is obvious that each complication takes lots of time and patiently concentration for the mother to be precisely understood and the decision making is even beyond of it. Decision making process cannot get precisely completed just in labor time, so free of any upcoming complication, informed consent may not be ethically verified on labor time. Decision making capacity is a complex mental process involving both cognitive and emotional components. Sometimes this complex action is reduced to “understanding” alone. There are uncertainties about decision-making capacity (mental competence) of women in labor in relation to giving informed consent to neuraxial analgesia. Considering these parameters, sufficient information about pain management methods (advantages, side effects, the way each procedure is conducted) should be provided as part of prenatal education and the consent process must be carefully conducted to enhance mothers’ autonomy [2]. To utilize effective methods for presenting the mothers with (like multimedia modules, recorded video of the sample procedure and so on) in late pregnancy should be considered to achieve better understanding and right decision. Patient decision aids are beneficial in clinical anesthesia and studies have shown that patients feel better informed, have better knowledge, and have less anxiety, depression and decisional conflicts after using this method [3]. It has been demonstrated that using decision aids prior to the procedure can significantly reduce the decision conflict, and improve both autonomy and outcome as a united benefit in favor of laboring mothers [4]. It seems that pain-relieving methods (neuraxial and other treatment options) should be described in details at the second and third trimester of pregnancy by a team consist of midwife, anesthesia provider and obstetrician. The more time is spent on this process; the better informed consent is achieved finally. Also high quality decision aids can increase women’s familiarity with medical terminology, options for care, and an insight into personal values, thereby decreasing decisional conflicts and increase knowledge [5]. Factors like parity, pain threshold, and estimated length of labor should be considered together in the decision process to individualize the best pain treatment option for mother [6].

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