scholarly journals A systematic review exploring the patient decision‐making factors and attitudes towards pre‐implantation genetic testing for aneuploidy and gender selection

2020 ◽  
Vol 100 (1) ◽  
pp. 17-29
Author(s):  
Timothy Bracewell‐Milnes ◽  
Srdjan Saso ◽  
Benjamin Jones ◽  
Sarah Cato ◽  
Riya Parikh ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Genetic Testing ◽  
Patient Decision Making ◽  
Gender Selection ◽  
Patient Decision ◽  
Decision Making Factors ◽  
And Gender

Review of patient decision-making factors and attitudes regarding preimplantation genetic diagnosis

2018 ◽  
Vol 94 (1) ◽  
pp. 22-42 ◽  
Author(s):  
M.C. Genoff Garzon ◽  
L.R. Rubin ◽  
M. Lobel ◽  
J. Stelling ◽  
L.M. Pastore
Keyword(s):  
Decision Making ◽  
Preimplantation Genetic Diagnosis ◽  
Genetic Diagnosis ◽  
Patient Decision Making ◽  
Patient Decision ◽  
Decision Making Factors

“When offered to participate”: A systematic review and meta-analysis of patient agreement to participate in cancer clinical trials.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 92-92
Author(s):  
Joseph M. Unger ◽  
Dawn L. Hershman ◽  
Cathee Till ◽  
Lori M. Minasian ◽  
Raymond U Osarogiagbon ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Clinical Trials ◽  
Meta Analysis ◽  
Trial Participation ◽  
Participation Rates ◽  
Patient Decision Making ◽  
Asian Patients ◽  
Patient Decision ◽  
Black Patients

92 Background: Patient participation in clinical trials (CTs) is vital for knowledge advancement and outcomes improvement. The rate of CT participation for adult cancer patients is between 5%-8%; many CTs fail due to poor accrual. Although patient decision-making is a common focus of studies examining barriers to CT participation, the rate of trial participation for patients actually offered a CT is unknown. Methods: We conducted a systematic review and meta-analysis using PubMed, Web of Science, and Ovid Medline search engines to identify studies over 20 years (1/1/2000-1/1/2020) that examined CT participation. Studies must have been conducted in the United States and specified the number of patients offered a CT and the number enrolled. We conducted a meta-analysis of single proportions using random effects. Rates were examined for both treatment trials and cancer control (CC) studies. We also compared the rates of enrollment between Black, Hispanic, and Asian patients versus White patients. Clinical care setting (academic vs community) was examined as a potential moderator. Results: We screened 3,241 unique citations and identified 35 (30 treatment and 5 CC) studies among which n = 9,759 patients were offered CT participation. Overall, 55.0% (95% CI: 49.4%-60.5%) of patients offered a CT agreed to enroll. Trial participation rates did not differ between treatment (55.0%, 95% CI: 48.9%-60.9%) and CC trials (55.3%, 95% CI: 38.9%-71.1%, p = .98); however, participation rates were significantly higher at academic centers (58.4%, 95% CI: 52.2%-64.5%) versus community centers (45.0%, 95% CI: 34.5%-55.7%, p = .04). In common studies, Black patients agreed to participate at similar rates (58.4%, 95% CI: 46.8%-69.7%) compared to White patients (55.1%, 95% CI: 44.3%-65.6%, p = .88). Results were also similar comparing White versus Hispanic or Asian patients. The main reasons for non-participation were treatment choice or lack of interest. Conclusions: More than half of all cancer patients who are offered CTs do participate; results were consistent between major race/ethnicity groups. This finding upends several conventional beliefs about cancer clinical trial participation, including that Black patients are less likely to agree to participate and that patient decision-making is the primary barrier to participation. Policies and interventions to improve CT participation should focus more on modifiable systemic structural and clinical barriers, such as improving access to existing trials and broadening trial eligibility.

Ethical issues in invasive mechanical ventilation for amyotrophic lateral sclerosis

2010 ◽  
Vol 17 (1) ◽  
pp. 51-63 ◽  
Author(s):  
Yuko Hirano ◽  
Yoshihiko Yamazaki
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Ethical Issues ◽  
Invasive Mechanical Ventilation ◽  
Patient Decision Making ◽  
Nursing Advocacy ◽  
Patient Decision ◽  
Decision Making Factors ◽  
Herth Hope Index ◽  
Lateral Sclerosis

Currently in Japan, discontinuing an invasive mechanical ventilator (IMV) is illegal; therefore IMV-related decision making is a crucial issue. This study examined IMV decision-making factors and psychological conflict in 50 patients with amyotrophic lateral sclerosis. The Herth Hope Index was used for the assessment of pre- and post-IMV conflict. Interviews identified some decision-making factors: patient’s decision, patient’s and family’s mutual decision, family’s decision, and emergency-induced without patient’s or family’s consent. Participants who experienced no IMV-related regret received sufficient prior IMV education from physicians and nurses, and time for reflection and family consultation. Their hope was similar to their pre-onset levels. Patients who received no prior IMV education accepted treatment as a natural progression. Their hope levels were lower than pre-onset. Those who received only a brief prior IMV explanation rejected the ventilator, experiencing regret if they were given an emergency IMV. Their hope levels were among the lowest. However, some of these patients managed to overcome their regret through being helped by nurses. Sufficient physician explanation and nursing advocacy for autonomous patient decision making are critical for improving hope in this patient group.

INNV-13. UNDERSTANDING FACTORS THAT INFLUENCE THE DECISION OF ACCEPTING TUMOR TREATING FIELDS (TTF) THERAPY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi107-vi108
Author(s):  
Priya Kumthekar ◽  
Madison Lyleroehr ◽  
Leilani Lacson ◽  
Roger Stupp ◽  
Rimas Lukas ◽  
...  
Keyword(s):  
Social Sciences ◽  
Decision Making ◽  
Influential Factors ◽  
Phase 3 ◽  
Patient Decision Making ◽  
Tumor Treating Fields ◽  
Familial Support ◽  
Patient Decision ◽  
Therapeutic Decisions ◽  
Decision Making Factors

Abstract BACKGROUND Tumor Treating Fields (TTF) Therapy is an FDA-approved therapy in the first line and recurrent setting for glioblastoma. Despite Phase 3 evidence showing improved survival, it is not uniformly utilized despite its availability. This qualitative prospective study interviewed glioblastoma patients to better understand key driving factors for decision making. METHODS Adult glioblastoma patients who were offered TTF and who signed IRB approved consent were included. Patients participated in a one-time recorded interview with the researchers from the Northwestern University Department of Medical Social Sciences and were asked about factors shaping their decision to use or not use TTF. RESULTS 40 patients were enrolled with a mean age of 53 years, 92.5% were white and 60% were male. Of the 33 (82.5%) participants who accepted TTF, 23 (69.7%) reported their physician recommending TTF, 8 (24.2%) reported physician neutrality toward TTF, and 2 (6.1%) said their physician advised against TTF. Among the 7 (17.5%) participants who did not choose TTF, 4 (57.1%) reported physician neutrality, 2 (28.6%) reported that their physician advised against TTF, and 1 (14.3%) reported that their physician recommended TTF. Participants who decided against TTF stated that head shaving, appearing sick, and inconvenience of wearing/carrying the device most influenced their decision. For those choosing to use TTF, the most influential factors were extending life and following their doctor's opinion; other factors included level of familial support and the clinical evidence supporting TTF. DISCUSSION This clinical study was a collaboration with the Medical Social Sciences team to better understand the key factors that drive patient decision making with TTF. Findings suggest that physician support and positive Phase 3 results are among the key decision-making factors. Properly understanding the path to patients’ decision making is crucial in optimizing use of TTF and other therapeutic decisions for glioblastoma patients.

scholarly journals Feasibility and Efficacy of Decision Aids to Improve Decision Making for Postmastectomy Breast Reconstruction: A Systematic Review and Meta-analysis

2018 ◽  
Vol 39 (1) ◽  
pp. 5-20 ◽  
Author(s):  
Nicholas L. Berlin ◽  
Vickram J. Tandon ◽  
Sarah T. Hawley ◽  
Jennifer B. Hamill ◽  
Mark P. MacEachern ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Breast Reconstruction ◽  
Decision Aids ◽  
Decisional Conflict ◽  
Decision Making Process ◽  
Patient Decision Making ◽  
Patient Decision ◽  
Perceived Involvement ◽  
The Impact

Background. The decision-making process for women considering breast reconstruction following mastectomy is complex. Research suggests that fewer than half of women undergoing mastectomy have adequate knowledge and make treatment decisions that are concordant with their underlying values. This systematic review assesses the feasibility and efficacy of preoperative decision aids (DAs) to improve the patient decision-making process for breast reconstruction. Methods. A systematic review was performed using PubMed, Ovid MEDLINE, EMBASE, CINAHL, and Cochrane Databases published prior to January 4, 2018. Studies that assessed the impact of a DA on patient decision making for breast reconstruction were identified. The effect of preoperative DAs on decisional conflict in randomized controlled trials (RCTs) was measured with inverse variance-weighted mean differences (mean difference [MD] ± 95% confidence interval [CI]). Results. Among 1299 unique articles identified, 1197 were excluded after reviewing titles and abstracts against selection criteria. Among the 17 studies included in this review, 11 assessed the efficacy of DAs for breast reconstruction and 6 additional studies described the development and usability of these DAs. Studies suggest that DAs reduce patient-reported decisional conflict (MD, –4.55 [95% CI, –8.65 to –0.45], P = 0.03 in the fixed-effects model and MD, –4.70 [95% CI, –10.75 to 1.34], P = 0.13 in the random-effects model). Preoperative DAs also improved patient satisfaction with information and perceived involvement in the decision-making process. Conclusions. The existing literature suggests that DAs reduce decisional conflict, improve self-reported satisfaction with information, and improve perceived involvement in the decision-making process for women considering breast reconstruction.

Decision-Making in Breast Cancer Surgery: Where Do Patients Go for Information?

2016 ◽  
Vol 82 (5) ◽  
pp. 397-402 ◽  
Author(s):  
Hank Schmidt ◽  
Almog Cohen ◽  
John Mandeli ◽  
Christina Weltz ◽  
Elisa R. Port
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Genetic Testing ◽  
Surgical Treatment ◽  
Breast Conserving Therapy ◽  
Cancer Surgery ◽  
Breast Cancer Surgery ◽  
The Internet ◽  
Patient Decision Making ◽  
Patient Decision

Patient decision-making regarding breast cancer surgery is multifactorial, and patients derive information on surgical treatment options from a variety of sources which may have an impact on choice of surgery. We investigated the role of different information sources in patient decision-making regarding breast cancer surgery. Two hundred and sixty-eight patients with breast cancer, eligible for breast-conserving therapy were surveyed in the immediate preoperative period, and clinical data were also collected. This survey evaluated the scope and features of patient-driven research regarding their ultimate choice of surgical treatment. The two most common sources of information used by patients were written material from surgeons (199/268–74%) and the Internet (184/268–69%). There was a trend for women who chose bilateral mastectomy to use the Internet more frequently than those choosing unilateral mastectomy ( P = 0.056). Number of surgeons consulted, genetic testing, and MRI were significant predictors of patient choice of mastectomy over breast-conserving therapy. Multivariate analysis showed that the number of surgeons consulted ( P < 0.001) and genetic testing ( P < 0.001) were independent predictors of choosing mastectomy, whereas MRI was not. In conclusions, understanding factors driving patient decision-making may promote more effective education for patients requiring breast cancer surgery.

scholarly journals Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e044472
Author(s):  
Saar Hommes ◽  
Ruben Vromans ◽  
Felix Clouth ◽  
Xander Verbeek ◽  
Ignace de Hingh ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Systematic Review ◽  
Decision Making ◽  
Systematic Reviews ◽  
Decision Aids ◽  
Specific Treatment ◽  
Cochrane Library ◽  
Plain Language ◽  
Patient Decision

ObjectivesTo assess the communicative quality of colorectal cancer patient decision aids (DAs) about treatment options, the current systematic review was conducted.DesignSystematic review.Data sourcesDAs (published between 2006 and 2019) were identified through academic literature (MEDLINE, Embase, CINAHL, Cochrane Library and PsycINFO) and online sources.Eligibility criteriaDAs were only included if they supported the decision-making process of patients with colon, rectal or colorectal cancer in stages I–III.Data extraction and synthesisAfter the search strategy was adapted from similar systematic reviews and checked by a colorectal cancer surgeon, two independent reviewers screened and selected the articles. After initial screening, disagreements were resolved with a third reviewer. The review was conducted in concordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DAs were assessed using the International Patient Decision Aid Standards (IPDAS) and Communicative Aspects (CA) checklist.ResultsIn total, 18 DAs were selected. Both the IPDAS and CA checklist revealed that there was a lot of variation in the (communicative) quality of DAs. The findings highlight that (1) personalisation of treatment information in DAs is lacking, (2) outcome probability information is mostly communicated verbally and (3) information in DAs is generally biased towards a specific treatment. Additionally, (4) DAs about colorectal cancer are lengthy and (5) many DAs are not written in plain language.ConclusionsBoth instruments (IPDAS and CA) revealed great variation in the (communicative) quality of colorectal cancer DAs. Developers of patient DAs should focus on personalisation techniques and could use both the IPDAS and CA checklist in the developmental process to ensure personalised health communication and facilitate shared decision making in clinical practice.

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