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PURPOSE: This study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported. MATERIALS AND METHODS: The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52-73 years; disease duration 6-99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual's experience of decision-making about PEG. The data were synthesised and analysed thematically. RESULTS: Three main themes and two sub-themes captured participant views on their decision-making. The first, "What matters most to me," comprised optimising quality of life and maintaining family membership. The second theme explored "Understanding PEG and the clinical pathway." The third theme was "Thoughts on using a decision aid." CONCLUSIONS: This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.

People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.

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Background: Minimally invasive hemorrhoid surgeries like Doppler-Guided Hemorrhoidal Artery Ligation (DGHAL) and Stapled Hemorrhoidopexy (PPH) offer benefits over traditional methods. This study investigated public perceptions and attitudes towards these surgeries, exploring awareness, preferences, and influencing factors. Methods: A detailed questionnaire was disseminated to 2011 participants from various regions of Taiwan in December 2023, gathering data on demographics, understanding of minimally invasive surgery, and attitudes towards hemorrhoid surgery. Chi-square tests were used for analysis (p < 0.05). Results: Hemorrhoid prevalence was similar across sexes and age groups. About 70 % preferred medical centers or district hospitals for surgery. Postoperative complications were a primary concern, with significant sex differences. Approximately 70 % preferred minimally invasive surgery if costs were below NT$50,000. Medical personnel showed higher awareness of minimally invasive surgery benefits. Most participants relied on personal networks and medical social media for information. Conclusions: The study revealed generally positive perceptions of minimally invasive hemorrhoid surgery, with cost being a significant factor. Knowledge gaps exist, particularly among non-medical personnel. Future initiatives should aim to enhance public awareness of minimally invasive surgery benefits, and policy considerations should address financial aspects of healthcare decisions.

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One prominent line of support for nudging in screening programs is the claim that nudging can help 'bad choosers' - that is, it can help some patients make choices more in line with their own values and preferences. In this article, I argue that due to the presence of epistemic risk in many screening programs, the argument that nudging can help 'bad choosers' should be revised or rejected. Expanding on the work of Biddle, J. B. 2020. Epistemic risks in cancer screening: Implications for ethics and policy. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 79: 101200.), I argue that epistemic risk undermines the argument that nudging can help to promote patient autonomy in the context of screening. Specifically, I argue that epistemic risk results in the inclusion of non-patient values and preferences in the screening process, which challenges the claim that nudging can help patients make choices more in line with their own values and preferences. I present four reasons to think epistemic risk undermines the argument in this way: (1) conflicting values; (2) lack of transparency; (3) limited autonomy in opting out; (4) unjustified manipulation. The presence of epistemic risk in screening programs means that nudging may not always be an effective means of promoting patient autonomy and informed consent. As such, epistemic risk poses significant challenges to at least one ethical justification of nudging in screening programs, and raises further questions about the role of nudging in promoting patient decision-making.

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BACKGROUND: Patient preferences toward metabolic bariatric surgery (MBS) remain inadequately explored. OBJECTIVE: This study aims to identify and analyze the key factors influencing the decision-making process of patients considering MBS. SETTING: The research was conducted at the metabolic bariatric surgery clinic of the Medical Research Institute Hospital, Alexandria University, Egypt. METHOD: Patients with obesity were recruited at the clinic before MBS. The surgical profiles were characterized by attributes including treatment method, recovery and reversibility, treatment tenure, expected weight loss, impact on associated medical problems, risk of complication, side effects, dietary changes, and out-of-pocket costs. Patients engaged in an online survey comprising sociodemographic data, Build Your Own (BYO) section, screening section, and choice tournament section. Adaptive choice-based conjoint analysis was employed to discern the preferences. RESULTS: Of the 299 respondents, the surgical profiles with the highest preference involved a loss of 80% of excess weight without any recurrence (14.67 [95% CI, 14.10-15.23]), 0% risk of complication (13.74 [95% CI, 13.03-14.45]), and absence of adverse effects (11.32 [95% CI, 10.73-11.91]). K-mean cluster analysis identified 2 distinct groups: "patients prioritize weight loss" group prioritized excess weight loss, surgery availability, and diet change, whereas "patients prioritize avoidance of complications" group focused on the risk of complication, adverse effects, and the surgery mechanism. CONCLUSIONS: MBS candidates predominantly value weight loss without recurrence, followed by minimization of complication risks and adverse effects, within 3 years postsurgery. Conversely, initial out-of-pocket costs and resolution of medical conditions were deemed the least influential attributes.

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BACKGROUND: Participants considering early-phase cancer clinical trials (CTs) need to understand the unique risks and benefits prior to providing informed consent. This qualitative study explored the factors that influence patients' decisions about participating in early-phase cancer immunotherapy CTs through the ethical lens of relational autonomy. METHODS: Using an interpretive descriptive design, interviews were conducted with 21 adult patients with advanced cancer who had enrolled in an early-phase CT. Data was analyzed using relational autonomy ethical theory and constant comparative analysis. RESULTS: The extent to which participants perceived themselves as having a choice to participate in early-phase cancer immunotherapy CTs was a central construct. Perceptions of choice varied according to whether participants characterized their experience as an act of desperation or as an opportunity to receive a novel treatment. Intersecting psychosocial and structural factors influenced participants' decision making about participating in early-phase cancer immunotherapy trials. These relational factors included: (1) being provided with hope; (2) having trust; (3) having the ability to withdraw; and (4) timing constraints. CONCLUSIONS: Findings highlight the continuum of perceived choice that exists among patients with cancer when considering participation in early-phase cancer immunotherapy CTs. All participants were interpreted as exhibiting some degree of relational autonomy within the psychosocial and structural context of early-phase CT decision making. This study offers insights into the intersection of cancer care delivery, personal beliefs and values, and established CT processes and structures that can inform future practices and policies associated with early-phase cancer immunotherapy CTs to better support patients in making informed decisions.

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Patient work in surgery recovery is fraught with complex judgments and decisions. These decisions are not unlike ones that professionals make that we traditionally study with the Naturalistic Decision Making (NDM) theoretical lens and methods. Similarly, patients are making decisions in naturalistic settings and doing so with the objective of minimizing risk and maximizing safety. What is different is that patients are put in a position to perform complex, high level, high consequence work in the absence of any training, education, or decision support. Using a lived experience, I illustrate that the burden of judgement and decision making in surgery recovery work (e.g., caring for surgical sites, managing drains, managing medications, supporting activities of daily living) can be understood through a macrocognitive paradigm. Thus, the NDM theoretical lens and the associated methods is appropriate to study this problem space.

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Cancer psychology is a vitally important part of cancer management. Qualitative research is a gateway to exploring this. Weighing the treatment options in terms of quality of life and survival is important. Given the globalization of healthcare seen in the last decade, the exploration of the decision-making process in a developing nation was deemed highly appropriate. The aim is to explore the thoughts of surgical colleagues and care providing clinicians about patient decision-making in cancer care in developing countries, with special reference to India. The secondary objective was to identify factors that may have a role to play in decision-making in India. A prospective qualitative study. The exercise was carried out at Kiran Mazumdhar Shah Cancer Center. The hospital is a tertiary referral center for cancer services in the city of Bangalore, India. A qualitative study by methodology, a focus group discussion was undertaken with the members of the head and neck tumor board. The results showed, in India, decision-making is predominantly led by the clinicians and the patient's family members. A number of factors play an important role in the decision-making process. These include as follows: health outcome measures (quality of life, health-related quality of life), clinician factors (knowledge, skill, expertise, judgment), patient factors (socio-economic, education, cultural), nursing factors, translational research, and resource infrastructure. Important themes and outcomes emerged from the qualitative study. As modern healthcare moves towards a patient-centered care approach, evidence-based patient choice and patient decision-making clearly have a greater role to play, and the cultural and practical issues demonstrated in this article must be considered. Supplementary Information: The online version contains supplementary material available at 10.1007/s13193-022-01521-x.

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Background The patient-physician relationship is changing, and patients are taking more responsibility in their decision-making. Many patients use the Internet as an important source of information regarding their health. Physician-rating websites provide essential information about the quality of care from patients' perspectives. However, choosing the appropriate healthcare provider is still complicated for any patient. Many patients find choosing a surgeon stressful because they cannot change the treating surgeon once the surgery is underway. Understanding a patient's preferences in choosing the right surgeon is essential to forming a patient-surgeon relationship and shaping practice. Nevertheless, little is known about the factors influencing patients' choices for elective surgeries in the Qassim region. Objectives This study aims to explore factors and the most common manners patients use to reach their appropriate surgeon in the Qassim Region, Saudi Arabia. Methods A cross-sectional study was conducted among target people over 18 years old in Qassim Region, Saudi Arabia, using a snowball sample study from October 2022 to February 2023. The data were collected online using Google Forms using a self-administered, valid Arabic questionnaire distributed to respondents via WhatsApp, Twitter, and Telegram. The questionnaire consists of two sections: participants' sociodemographic status, including age, gender, nationality, residence, occupation, and monthly income; and a section to evaluate factors influencing patient decision-making when choosing a surgeon for elective surgery. Results The factors that were significantly associated with elective surgery were: gender of the doctor (adjOR = 1.62, 99% CI: 1.29-2.04); age (adjOR = 1.31, 99% CI: 1.13-1.53); gender of the study patient (adjOR = 1.64, 99% CI: 1.28-2.10); nationality (adjOR = 0.49, 95% CI: 0.26-0.88); and employment (adjOR = 0.89, 95% CI: 0.79-0.99). Conclusions The cultural background in the Kingdom of Saudi Arabia plays a significant role in influencing gender in the choice of the surgeon for elective surgery. Recommendations from friends and family members play a less significant role in the choice of the surgeon for elective surgery. Patients in employment and pensioners seem to have a significant preference in the choice of surgeon for elective surgery.

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INTRODUCTION: The aim of this study was to evaluate patient reported outcome measures using the EQ5D-5L and EQ5D-5L visual analogue scale (VAS) following elective shoulder and elbow orthopaedic list delays. This was further correlated with patients' intention to proceed with the planned surgery. METHODS: Patients on the waiting list for more than 26 weeks were included in the study. Telephone interviews were conducted utilising the EQ5D-5L and the EQ5D-5L VAS at the time of addition to the waiting list and presently. RESULTS: 75 out of 324 screened patients were eligible. 62 (82.7%) patients still wanted to proceed with their planned procedure while 13 (17.3%) patients in the other group no longer wanted to proceed. There was no statistically significant difference in the mean age, gender, initial trial of conservative treatment and limb laterality between these groups (p < 0.05). There was a statistically significant difference in the mean duration of being on the waiting list between these groups (40.4 ± 19 vs. 62.9 ± 17.5 weeks respectively). Furthermore, statistically significant differences (p < 0.05) in the current EQ5D-5L VAS scores were observed between these groups (52.4 vs. 65.8 respectively). CONCLUSION: This study has shown that majority of patients on elective shoulder and elbow orthopaedic lists with prolonged waiting list delays and improved EQ5D-5L scores are likely to decline the planned procedure and vice versa. Nevertheless, the unplanned 'watchful waiting' caused by the COVID-19 pandemic and leading to patients deciding to decline surgery, is not a substitute for timely planned surgery to alleviate patients' suffering.

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INTRODUCTION: Overactive bladder (OAB) is often suboptimally addressed by behavioral or pharmacological treatments. Less than 15% of patients choose to pursue advanced OAB therapy (sacral nerve stimulation [SNS], percutaneous tibial nerve stimulation [PTNS], and bladder onabotulinum toxin type-A [BTX-A]). We seek to better understand which factors are most important to patients when choosing a third-line therapy. METHODS/MATERIALS: We developed a conjoint analysis survey that included five attributes of the third-line options for OAB (SNS, PTNS, and BTX-A). We administered the survey to new patients with urinary incontinence at two institutions. A hierarchical Bayes random effects regression analysis was used to determine the relative importance of the attributes. A choice simulator was used to model which third-line treatment options patients preferred. We followed patients to see if they pursued their predicted treatment. RESULTS: A total of 108 patients completed the study of whom 89% were women. There was representation from all age groups. The most important attributes of decision-making were the frequency of future procedures, the risk of catheterization, and the need for a device. On market simulation, SNS was the preferred treatment option (47%), followed by PTNS (29%) and BTX-A (14%). Only 10% of patients did not find any treatment option acceptable. CONCLUSIONS: Frequent follow-up, risk of catheterization, and the need for a device were the most important attributes when making a decision on third-line OAB therapy. On market simulation, SNS is the preferred treatment for all age groups though the ultimate choice in third-line therapy may be affected by external factors.

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Context: Outcomes in renal cell carcinoma (RCC) are reported inconsistently, with variability in definitions and measurement. Hence, it is difficult to compare intervention effectiveness and synthesise outcomes for systematic reviews and to create clinical practice guidelines. This uncertainty in the evidence makes it difficult to guide patient-clinician decision-making. One solution is a core outcome set (COS): an agreed minimum set of outcomes. Objective: To describe outcome reporting, definitions, and measurement heterogeneity as the first stage in co-creating a COS for localised renal cancer. Evidence acquisition: We systematically reviewed outcome reporting heterogeneity in effectiveness trials and observational studies in localised RCC. In total, 2822 studies (randomised controlled trials, cohort studies, case-control studies, systematic reviews) up to June 2020 meeting our inclusion criteria were identified. Abstracts and full texts were screened independently by two reviewers; in cases of disagreement, a third reviewer arbitrated. Data extractions were double-checked. Evidence synthesis: We included 149 studies and found that there was inconsistency in which outcomes were reported across studies and variability in the definitions used for outcomes that were conceptually the same. We structured our analysis using the outcome classification taxonomy proposed by Dodd et al. Outcomes linked to adverse events (eg, bleeding, outcomes linked to surgery) and renal injury outcomes (reduced renal function) were reported most commonly. Outcomes related to deaths from any cause and from cancer were reported in 44% and 25% of studies, respectively, although the time point for measurement and the analysis methods were inconsistent. Outcomes linked to life impact (eg, global quality of life) were reported least often. Clinician-reported outcomes are more frequently reported than patient-reported outcomes in the renal cancer literature. Conclusions: This systematic review underscores the heterogeneity of outcome reporting, definitions, and measurement in research on localised renal cancer. It catalogues the variety of outcomes and serves as a first step towards the development of a COS for localised renal cancer. Patient summary: We reviewed studies on localised kidney cancer and found that multiple terms and definitions have been used to describe outcomes. These are not defined consistently, and often not defined at all. Our review is the first phase in developing a core outcome set to allow better comparisons of studies to improve medical care.

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Colorectal cancer (CRC) screening rates remain suboptimal in the US. We examined patient-focused concerns and influence of various factors (e.g., test attributes, provider recommendation) on CRC screening decision-making. We conducted a web survey with 1595 US adults aged 40-75 from a nationally representative panel in November 2019 (completion rate: 31.3 %). Analyses focused on individuals aged 45-75 years at average-risk for CRC (n = 1062). All participants rated their level of concern about various CRC screening test/procedure attributes. Participants who have screened previously designated the three most important attributes for choosing a screening method and rated how various factors influenced their decision to use a particular method. The top concern for participants who have not screened previously was having an invasive procedure (54.2 %) while the top concerns for participants who have screened previously were completing a colon prep (41.3 %) and test/procedure accuracy (41 %). Cost/insurance coverage was most frequently ranked among the most important attributes (48.5 %), followed by where the test can be taken (45.7 %) and test accuracy (43.6 %). Provider recommendation was reported as the major motivator across screening methods. Other factors that were frequently reported as very influential included convenience and comfort for the stool-based methods and scientific/clinical evidence and insurance coverage for colonoscopy. Variations by age, sex, and race/ethnicity were noted. Findings demonstrate that along with provider recommendation, patient preferences regarding test/procedure attributes and preparation requirements are influential in screening decision-making, highlighting the need for clinicians to involve patients in shared decision-making and incorporate patient needs and preferences in establishing screening strategies.

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BACKGROUND: Empirical evidence supports the use of structured goals of care conversations and documentation of life-sustaining treatment (LST) preferences in durable, accessible, and actionable orders to improve the care for people living with serious illness. As the largest integrated healthcare system in the USA, the Veterans Health Administration (VA) provides an excellent environment to test implementation strategies that promote this evidence-based practice. The Preferences Elicited and Respected for Seriously Ill Veterans through Enhanced Decision-Making (PERSIVED) program seeks to improve care outcomes for seriously ill Veterans by supporting efforts to conduct goals of care conversations, systematically document LST preferences, and ensure timely and accurate communication about preferences across VA and non-VA settings. METHODS: PERSIVED encompasses two separate but related implementation projects that support the same evidence-based practice. Project 1 will enroll 12 VA Home Based Primary Care (HBPC) programs and Project 2 will enroll six VA Community Nursing Home (CNH) programs. Both projects begin with a pre-implementation phase during which data from diverse stakeholders are gathered to identify barriers and facilitators to adoption of the LST evidence-based practice. This baseline assessment is used to tailor quality improvement activities using audit with feedback and implementation facilitation during the implementation phase. Site champions serve as the lynchpin between the PERSIVED project team and site personnel. PERSIVED teams support site champions through monthly coaching sessions. At the end of implementation, baseline site process maps are updated to reflect new steps and procedures to ensure timely conversations and documentation of treatment preferences. During the sustainability phase, intense engagement with champions ends, at which point champions work independently to maintain and improve processes and outcomes. Ongoing process evaluation, guided by the RE-AIM framework, is used to monitor Reach, Adoption, Implementation, and Maintenance outcomes. Effectiveness will be assessed using several endorsed clinical metrics for seriously ill populations. DISCUSSION: The PERSIVED program aims to prevent potentially burdensome LSTs by consistently eliciting and documenting values, goals, and treatment preferences of seriously ill Veterans. Working with clinical operational partners, we will apply our findings to HBPC and CNH programs throughout the national VA healthcare system during a future scale-out period.

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INTRODUCTION: Treatment choice for localized prostate cancer is complicated, as each treatment option comes with various pros and cons. It is well established that active surveillance (AS), may be ended with a change to curative treatment at the time of disease progression, but it is less clear whether secondary treatment after initial curative treatment is required. As part of the PIONEER project, we quantified the probabilities of treatment change. METHODS: A cohort study based on PRIAS and ERSPC-Rotterdam data was conducted. Patients were followed up for 10 years or until the 31st of December 2017. The primary outcome was the incidence of treatment change following initial treatment (i.e., a change to curative treatment following AS or secondary treatment after initial RP/RT). RESULTS: Over a period of 1 to 5 years after initial treatment, the cumulative incidence of treatment change ranged from 3.8% to 42.8% for AS, from 7.6% to 12.1% for radical prostatectomy (RP) and from no change to 5.3% for radiation therapy (RT). While the possibility of treatment change in AS is known, the numbers within a five-year period were substantial. For RP and RT, the rate of change to secondary treatment was lower, but still non-neglectable, with 5 (10)-year incidences up to 12% (20%) and 5% (16%), respectively. CONCLUSION: This is one of the first studies comparing the incidence of guideline-recommended treatment changes in men receiving different primary treatments (i.e., AS, RT, or RP) for localized prostate cancer (PCa).

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BACKGROUND: Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision-making from conceptualizations of a 'well-considered' decision. METHODS: UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well-considered' decision-making, where 'well-considered' decisions involve consideration of all likely outcomes. RESULTS: Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. CONCLUSIONS: While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as 'well-considered'. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. PATIENT OR PUBLIC CONTRIBUTION: This paper is a direct response to a patient-identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come.

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OBJECTIVE: To explore the relationships of health literacy, preferred involvement, and patient activation with perceived involvement in care among patients with breast and cervical cancer. METHODS: A cross-sectional survey was conducted with patients aged 20 years or older, aware of their cancer diagnosis, and currently receiving care at the National Cancer Center, Mongolia. Descriptive statistics and multivariate regression analysis were used to identify the relationships among study variables. RESULTS: Two hundred twenty-five patients were included in the final analysis. Patients' perceived involvement was examined as two subdomains: patient information seeking (PIS) and patient decision-making (PDM). Patient health literacy was found to only significantly influence PIS, and patient preferred involvement demonstrated a significant influence only on PDM. However, patient activation predictor was found to significantly influence both PIS and PDM (PIS [ß = 0.22, p = 0.00] and PDM [ß = 0.14, p = 0.00]). CONCLUSION: Health literacy, preferred involvement, and patient activation each demonstrated distinct influences on patients' perceived involvement subdomains, with patient activation being the most important predictor. PRACTICE IMPLICATIONS: Comprehensive strategies at the healthcare organization, professional, and patient levels may help to facilitate and advance patient involvement in care, and ultimately improve the quality of healthcare services respective to domain of patient-centeredness.

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Background: Health literacy (HL) is a risk factor for adverse outcomes in patients with cardiovascular disease, and shorter pre-hospital delay time is crucial for successful treatment of acute myocardial infraction (AMI) patients. Most previous studies focused on the influencing factors of pre-hospital delay but ignore the essential contribution of decision delay. Aims: Therefore, the purpose of this study was to explore the effect of HL on decision delay. Methods: Continuously included AMI patients admitted to a grade A class three hospital in Chongqing. HL level was assessed using Brief Health Literacy Screen and categorized as adequate or inadequate. Mann-Whitney U-test and Chi-square test were used to compare the differences between groups, and binary logistic regression was used to analyze the association between HL and decision delay. Results: A total of 217 AMI patients were enrolled in this study, including 166 males (76.5%) and 51 females (23.5%), with the median age was 68 years old; 135 (62.2%) patients had delayed decision-making while 82 (37.8%) did not; 157 (72.7%) patients had inadequate HL and 59 (27.3%) had adequate HL. The total HL score of non-delayed group was higher than that in delayed group (9.22 vs. 7.02, P < 0.000). Conclusion: After adjusting for covariates, HL was significantly negatively associated with decision time. AMI patients with inadequate HL were more likely to delay seeking timely medical care.

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BACKGROUND: Precision medicine, as a personalized medicine approach based on biomarkers, is a booming field. In general, physicians and patients have a positive attitude toward precision medicine, but their knowledge and experience are limited. In this study, we aimed at assessing the expectations and educational needs for precision medicine among rheumatologists, rheumatology fellows and patients with rheumatic diseases in Canada. METHODS: We conducted two anonymous online surveys between June and August 2018, one with rheumatologists and fellows and one with patients assessing precision medicine expectations and educational needs. Descriptive statistics were performed. RESULTS: 45 rheumatologists, 6 fellows and 277 patients answered the survey. 78% of rheumatologists and fellows and 97.1% of patients would like to receive training on precision medicine. Most rheumatologists and fellows agreed that precision medicine tests are relevant to medical practice (73.5%) with benefits such as helping to determine prognosis (58.9%), diagnosis (79.4%) and avoid treatment toxicity (61.8%). They are less convinced of their usefulness in helping to choose the most effective treatment and to improve patient adherence (23.5%). Most patients were eager to take precision medicine tests that could predict disease prognosis (92.4%), treatment response (98.1%) or drug toxicity (93.4%), but they feared potential negative impacts like loss of insurability (62.2%) and high cost of the test (57.5%). CONCLUSIONS: Our study showed that rheumatologists and patients in Canada are overall interested in getting additional precision medicine education. Indeed, while convinced of the potential benefits of precision medicine tests, most physicians don't feel confident in their abilities and consider their training insufficient to incorporate them into clinical practice.

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Timely management of frontotemporal dysfunction associated with amyotrophic lateral sclerosis (ALS) has important prognostic and therapeutic implications. However, there remains a paucity of research on best practise recommendations to guide the development of interventions for cognitive and behavioural symptoms as part of ALS care. Accordingly, a focus on illness perceptions may provide a preliminary framework for managing cognitive and behavioural symptoms. The aim of the present study was to explore the nature of illness perceptions among ALS patients with cognitive and behavioural symptoms. A total of 39 patients were recruited from a specialised ALS clinic. Factor analysis showed three independent and clinically interpretable factors corresponding to "cognitive and emotion related ALS perceptions," "cognitive- specific ALS perceptions" and "ALS coherence". Of these factors, greater perceived cognitive and emotional impacts of ALS were associated with an approximate 4-fold increased risk of behavioural changes (p < 0.05). Greater perceived cognitive and emotional impacts of ALS was also associated with more rapid disease progression (p < 0.001). As such, timely provision of intervention addressing perceptions about the impact of ALS on functioning as well as associated emotional distress may optimise clinical management of cognitive and behavioural symptoms of ALS.

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The decision to use adjuvant chemotherapy (ACT) after surgical resection for stage II colon cancer remains an area of clinical uncertainty. Many patients diagnosed with stage II colon cancer receive ACT, despite inconclusive evidence of long-term clinical benefit. This study investigates patient experiences and perceptions of treatment decision-making and shared decision making (SDM) for ACT among patients diagnosed with stage II colon cancer. Stage II colon cancer patients engaged in treatment or follow-up care aged >18 years were recruited from two large NYC health systems. Patients participated in 30-60-min semi-structured interviews. All interviews were transcribed, translated, coded, and analyzed using a thematic analysis approach. We interviewed 31 patients, of which 42% received ACT. Overall, patient perspectives indicate provider inconsistency in communicating ACT harms, benefits, and uncertainties, and poor elicitation of patient preferences and values. Patients reported varying perceptions and understanding of personal risk and clinical benefits of ACT. For many patients, receiving a clear treatment recommendation from the provider limited their participation in the decision-making process, whether it aligned with their decisional support preferences or not. Findings advance understanding of perceived roles and preferences of patients in SDM processes for cancer treatment under heightened clinical uncertainty, and indicate a notable gap in understanding for decisions made using SDM models in the context of clinical uncertainty. Educational and communication strategies and training are needed to support providers in communicating uncertainty, risk, treatment options, and implementing clinical guidelines to support patient awareness and informed decisions.

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