Participation In Medical Decision Research Articles

Experience of financial toxicity and coping strategies in young and middle-aged patients with stroke: a qualitative study

BackgroundWhile financial toxicity (FT) is prevalent in patients with cancer, young and middle-aged patients with stroke are also affected by FT, which can exacerbate their physical and psychological challenges. Understanding the patient’s experience and response measures can further understand the impact of FT on patients with stroke, to help alleviate FT. However, little is known concerning the experience of patients with stroke with FT or their coping strategies. Therefore, this study aimed to describe the experiences of FT in young and middle-aged patients with stroke and their coping strategies.MethodsA phenomenological method was utilized. Semi-structured interviews were conducted with 21 young and middle-aged stroke patients (aged 18–59) between October 2022 and March 2023. The participants were recruited from a tertiary hospital in Shanghai, China. The research team used NVivo 12.0 software. Giorgi’s phenomenological analysis method was used to analyse the interview data.ResultsThe interview results were divided into two categories in terms of patients’ experiences of FT and their coping strategies. Nine subthemes were constructed. The experience category included four subthemes: (1) taking on multifaceted economic pressure, (2) dual choice of treatment, (3) decline in material living standards, and (4) suffering from negative emotions such as anxiety and depression. The coping strategy category included five subthemes: (1) reducing expenses, (2) improving living habits, (3) proactive participation in medical decision-making, (4) making a job position choice, and (5) seeking social support.ConclusionsFT in young and middle-aged patients with stroke, which affected their physical and mental health, led them to implement strategies for dealing with FT. The Chinese government needs to broaden the reach of health insurance coverage and advance the fairness of healthcare policies. Healthcare professionals must pay active attention to FT in such patients in terms of strengthening their health education and considering their needs and preferences. Patients need to improve their sense of self-efficacy, actively reintegrate into society, and adhere to rehabilitation and treatment. Individuals at a high risk of stroke are recommended to purchase health insurance. Multifaceted efforts are needed to reduce the impact of FT in young and middle-aged patients with stroke.

Kanser terminologiyasini o'zbek xalqining tushunishı

The objective of this study was to replicate and extend an earlier studies examining lay people’s understanding of cancer-related terms in a Uzbek sample by examining understanding of general terms relating to diagnosis, prognosis, treatment and an experimental study of the effects of medical jargon versus plain language on people's perceptions of the effectiveness of interactions with oncologists, participation in medical decision making and interpersonal trust.

Role of Nurse Practitioners in Shared Decision Making: Examples of Heart Failure Patients in Rural Hospital

<p>醫療自主權於現今醫療環境中日趨重要，以病人為中心照護的重要環節，就是鼓勵病患積極參與醫療決策，以提升照護品質與滿度度。台灣衛生福利部自2016年開始推行醫病共享決策（shared decision making, SDM），期望促使病人積極參與醫療決策，以提升醫病關係、醫療品質及病人安全。推動至今，共享決策已廣泛運用於臨床實務中。但是，偏鄉及高齡長者，其就醫習慣、喜好、價值觀和醫療新知取得與都市居民有極大的差異。傳統以「醫生」作決策的觀念深植，參與SDM之意願以及推廣策略，值得探討。因此，本文將從專科護理師之角色去探討共享決策於偏鄉醫院推動影響因素，推行過程所遇到困境與經驗，綜整考量偏鄉居民特質及觀念，因應出不同之SDM推行之道。</p> <p> </p><p>The importance of patient autonomy is increasing in current complex medical environment as well as the promotion of patient-centered care. One key aspect of patient-centered care is to encourage patients to actively participate in medical decision-making in order to improve the quality and sat-isfaction of care. Since 2016, the Ministry of Health and Welfare of Taiwan has promoted shared decision-making (SDM), aimed at facilitating patient participation in medical decision-making and enhancing doctor-patient relationships for medical quality and patient safety. Since then, SDM has been widely applied in clinical practice. However, rural and elderly patients have significant deviations from urban residents in their health-seeking habits, preferences, values and access to medical informa-tion. The traditional concept of “doctor” as sole decision maker is deeply rooted in rural and elderly patients’ mind, and their willingness to participate in SDM and how to promote it are worth exploring. Therefore, the aim of this paper is to discuss from nurse practitioners’ point of view of about the chal-lenges and factors that influence the experiences of the implementation of SDM in rural hospitals. The results of this synthesis will contribute to proper implementation of SDM in low health literacy areas in the future.</p> <p> </p>

Awareness Regarding Medicolegal Aspects of Medical Services Among Reproductive Age Women: A Population-Based Cross-Sectional Study.

The government has implemented various laws to regulate medical practice and improve the quality of health care services. This study evaluated the general population's awareness of various medicolegal aspects related to the medical profession. Methods: A cross-sectional study was conducted. Knowledge of laws and ethics related to medical practice was assessed based on a well-structured questionnaire including 25 items. Women were categorized based on their score into low (below 50th percentile), medium (50th -75th percentile), and high (above 75th percentile) awareness. Results: A total of 334 women were recruited. The mean age of the women in the study was 30.29±6.58 SD years; most women were between 20-30 (56.28%). Most women were graduates (33.23%), followed by postgraduates (29.04%). The majority of women were unemployed (housewives: 64.67%, students: 4.49%), followed by skilled workers (22.75%), semi-professional, and professionals (8.08%). High awareness about the various medicolegal aspects was seen in 25.1% of women, while 29.04% had medium awareness and 45.80% had low awareness. It was also seen that the women with higher education(p=0.002) and those employed (0.001) had better knowledge. Further, graduate housewives had better awareness than non-graduate housewives. Conclusion: Education and self-independence significantly affected awareness of medicolegal issues among our women. Assuring the right to education and empowering women with self-independence will go a long way in ensuring active participation in medical decision-making.

Informing about childbirth without increasing anxiety: a qualitative study of first-time pregnant women and partners’ perceptions and needs

BackgroundComplications requiring medical interventions during childbirth are far from rare, even after uncomplicated pregnancies. It is often a challenge for maternity healthcare professionals to know how to prepare future parents for these eventualities without causing unnecessary anxiety. Studies on traumatic birth experiences have shown that feelings of loss of control, insufficient information, and lack of participation in medical decisions during childbirth are factors of difficult experiences. However, little is known about the information and communication needs of expectant parents about childbirth during the prenatal period. To gain a deeper understanding of the information and communication needs of first-time pregnant women and partners, we explored their perceptions and expectations for their upcoming childbirth, and the actions they initiated to prepare for it.MethodsSemi-structured interviews were conducted individually with first-time pregnant women and partners of pregnant women aged 18 years or older, with an uncomplicated pregnancy. Thematic analysis was used to identify themes and sub-themes.ResultsTwenty expectant parents (15 pregnant women and five partners of pregnant women) were interviewed. Six themes were identified: Childbirth event; Childbirth experience; Childbirth environment; Organisation of care; Participation in decision making; Roles within the couple and transition to parenthood.ConclusionsThis study contributes to a better understanding of the information needs of future parents expecting their first child. Results highlighted that the notion of “childbirth risks” went beyond the prospect of complications during birth, but also encompassed concerns related to a feeling of loss of control over the event. Expectant parents showed an ambivalent attitude towards consulting risk information, believing it important to prepare for the unpredictability of childbirth, while avoiding information they considered too worrying. They expressed a desire to receive concrete, practical information, and needed to familiarise themselves in advance with the birth environment. Establishing a respectful relationship with the healthcare teams was also considered important. The findings suggest that information on childbirth should not be limited to the transmission of knowledge, but should primarily be based on the establishment of a relationship of trust with healthcare professionals, taking into account each person’s individual values and expectations.

Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: a qualitative study.

The paediatric cardiac ICU presents unique challenges to optimal communication practices, which may impact participation in medical decision-making and long-term psychosocial outcomes for families. This study characterised parent perceptions of (1) team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions. A purposive sample of parents of children admitted to the cardiac ICU was selected to participate in interviews about their communication experiences. Data were analysed using a grounded theory approach. Twenty-three parents of 18 patients participated with an average length of stay of 55 days at the time of interview. Team practices that impeded communication included inaccurate/incomplete communication, inconsistent within team communication/coordination, and feeling overwhelmed by too many team members/questions. Team practices that facilitated communication included valuing parent preferences, provider continuity, explaining jargon, and eliciting questions. Preparation for family meetings included team practices, parental preferences, and experiences when learning about family meetings (including apprehension about meetings). Family meetings were described as valued opportunities to improve communication. Communication with medical teams represents a modifiable determinant of long-term outcomes for families of children in the cardiac ICU. When parents are included as valued members of their child's care team, they are more likely to feel a sense of control over their child's outcomes, even in the face of prognostic uncertainty. Family meetings represent an important opportunity to repair fractures in trust between families and care teams and overcome barriers to communication between parties.

Physicians' Opinion on Intraoperative Radiotherapy as a Therapeutic De-Escalation Option in Older Women with Early Breast Cancer.

Intraoperative radiotherapy (IORT) is a therapeutic de-escalation option in older women with low-risk early breast cancer (EBC). A qualitative study was implemented to describe EBC physicians' points of view on IORT as a de-escalation option. Recorded face-to-face and telephone semi-structured interviews were conducted among diverse physicians from seven French comprehensive cancer centers. Interview transcripts were grouped as corpus to construct a typology. Thematic analysis was performed. Positions toward IORT were contrasted between the 16 participating physicians. Five fully supported IORT as a de-escalation option, four were not in favor, and seven had a more reserved or neutral opinion. Points of divergence concerned treatment efficacy, treatment duration, side effects and sequelae, psychological impact, compliance with adjuvant endocrine therapy, logistical constraints, financial cost, and availability of other techniques of partial breast irradiation. Physicians in favor of IORT emphasized direct benefits for the patient, and those against pointed the lack of specific guidelines, risk of lost opportunity in older women with long life expectancy, and challenges of shared decision making. Despite national policies to preserve cancer patients' quality of life and increase their participation in medical decision making, therapeutic de-escalation using IORT is not consensual among physicians. Further efforts are needed to promote patient-centered care.

"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making.

Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.

A survey of healthcare professionals’ perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development

Parents of infants born with differences in sex development (DSD) face many difficult decisions. As part of a larger project designed to develop educational interventions to promote shared decision making, this study assessed healthcare professionals' (HCPs) perceptions of parental decision-making needs when an infant is born with a DSD. A cross-sectional web-based survey following the Ottawa Decision Support Framework was conducted in two waves, between October 2020 and June 2022. Survey domains included: common DSD decisions, indicators of parents' decisional needs, and resources and approaches to support parental decision making. Eligible participants were HCPs working within interprofessional pediatric DSD centers in the USA. Up to three reminders were sent. Descriptive analysis was conducted. 71 HCPs participated; most (>90%) reported parents experience signs of decisional conflict including feeling unsure, worrying about what could go wrong, and fear of choosing a "wrong," irreversible option. The majority (90%) reported parents experience strong emotions interfering with their receptivity to information or deliberation. The majority (>70%) identified inadequate parental knowledge of the DSD as a barrier to decision making, coupled with information overload (>90%). HCPs rated several factors as "very" important, including: parents having information on benefits, harms, and other features of options (93%), having information about all the available options (87%), and having access to providers to discuss the options (84%). Providers endorsed using a variety of approaches to support parents' decision making; however, access to decision aids was not universally rated as highly important (very, 44%; somewhat, 46%; a little, 10%). Overall, HCPs expressed favorable attitudes toward supporting active parental participation in medical decision making. Opportunities for enhanced support of shared decision making included: a) recognizing and addressing parental emotional distress and informational overload at a time when parents need to consider complex options for their infant or young child; and b) the need for HCPs to encourage values clarification in decision-making encounters with parents.

Meeting Parents' Needs for Education and Preparation following Congenital Heart Disease Diagnosis: Recommendations from a Crowdsourced Study.

This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs. Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs. Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs. Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making. · CHD counseling after diagnosis may provide opportunities to promote parents' mental health.. · Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.. · This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive..

Patients’ Preference for Participation in Medical Decision-Making: Secondary Analysis of the BEDSIDE-OUTSIDE Trial

BackgroundPatients may prefer different levels of involvement in decision-making regarding their medical care which may influence their medical knowledge.ObjectiveWe investigated associations of patients’ decisional control preference (DCP) with their medical knowledge, ward round performance measures (e.g., duration, occurrence of sensitive topics), and perceived quality of care measures (e.g., trust in the healthcare team, satisfaction with hospital stay).DesignThis is a secondary analysis of a randomized controlled multicenter trial conducted between 2017 and 2019 at 3 Swiss teaching hospitals.ParticipantsAdult patients that were hospitalized for inpatient care.Main MeasuresThe primary outcome was patients’ subjective average knowledge of their medical care (rated on a visual analog scale from 0 to 100). We classified patients as active, collaborative, and passive according to the Control Preference Scale. Data collection was performed before, during, and after the ward round.Key ResultsAmong the 761 included patients, those with a passive DCP had a similar subjective average (mean ± SD) knowledge (81.3 ± 19.4 points) compared to patients with a collaborative DCP (78.7 ± 20.3 points) and active DCP (81.3 ± 21.5 points), p = 0.25. Regarding patients’ trust in physicians and nurses, we found that patients with an active vs. passive DCP reported significantly less trust in physicians (adjusted difference, − 5.08 [95% CI, − 8.69 to − 1.48 points], p = 0.006) and in nurses (adjusted difference, − 3.41 [95% CI, − 6.51 to − 0.31 points], p = 0.031). Also, patients with an active vs. passive DCP were significantly less satisfied with their hospital stay (adjusted difference, − 7.17 [95% CI, − 11.01 to − 3.34 points], p < 0.001).ConclusionPatients with active DCP have lower trust in the healthcare team and lower overall satisfaction despite similar perceived medical knowledge. The knowledge of a patient’s DCP may help to individualize patient-centered care. A personalized approach may improve the patient-physician relationship and increase patients’ satisfaction with medical care.Trial RegistrationClinicalTrials.gov (NCT03210987).

How Does Confucianism Influence Health Behaviors, Health Outcomes and Medical Decisions? A Scoping Review

The aim of this study is to analyze the influence of Confucianism on health behaviors, health outcomes and medical decisions. The research was conducted using the following databases: PubMed, Scopus, CINHAL, PsycINFO and Web of Science, without restrictions of language and year of publication. The search process identified 833 publications matching the search criteria, and after the review process, 40 articles were included. Family is a central aspect of Confucianism, and it seems to affect participation in medical decisions, taking care of relatives, ethical dilemmas and mental health problems. Although most Confucianist influence seems to be positive, some ways of thinking could increase suffering, burnout and a delay in healthcare seeking. Understanding these values could help health professionals to deal with the growing contingent of patients with different cultures and religious beliefs.

Children's decision making in cancer therapy: A long-term observational study.

The survival rate of children with cancer has increased substantially in recent years. Shared decision making (i.e., the ability of children with cancer to express their will and share it with medical personnel) has become a particularly important issue. The nature and developmental processes of children's decision making in hospital should be understood. There is, however, a lack of research in this area. From January 2016 to March 2018, we conducted a longitudinal qualitative observational study, within the context of medical anthropology, in a hospital pediatric ward in Japan. We investigated the nature and development of decision making among seven children aged 5-12 years with hematologic cancers. We recorded their everyday behaviors, interactions, narratives, and events in the ward. The recording was conducted systematically and it was analyzed thematically using both variable-oriented and process-oriented modes to assess causal relationships between phenomena. The thematic analysis identified three thematic scenes in which children developed their will regarding cancer treatment: (1) adjusting to hospital life; (2) forming friendships with other children; and (3) communicating with medical personnel. Sharing information, building trusting relationships, and sharing treatment goals with medical personnel were identified as forms of children's participation in medical decision making. Through cultivated friendships, children's peer groups were sources of resilience and strength in overcoming difficulties in hospital life. The development of children's decision making in a pediatric oncology ward was based on various rich human relationships. Such relationships should be promoted to improve shared decision making substantially.

The Influence of SDM-Based Individualized Management Model on the Health Outcome and Quality of Life of Maintenance Hemodialysis Patients

Background Chronic kidney disease is a common clinical problem that endangers human physical and mental health and life safety. It eventually evolves into end-stage renal disease, and the incidence has increased year by year. It has been reported that the incidence of chronic kidney disease in China is about 10 %, and most patients need to carry out dialysis to maintain life. Objective To observe the influence of an individualized management model based on shared decision-making (SDM) between doctors, nurses and patients on the health outcomes and quality of life of maintenance hemodialysis patients. Methods A total of 100 end-stage renal disease patients treated with maintenance hemodialysis intervention in the Department of Nephrology, Changyisha City Fourth Hospital from May 2020 to May2021 were selected. According to the order of admission, they were randomly divided into control groups (n=50)) And the observation group (n=50). The control group received conventional management mode intervention, and the observation group received SDM-based individualized management mode intervention. The blood pressure and fluid control of the two groups were recorded, and the self-management behavior scale for hemodialysis patients (SMSH), the satisfaction survey questionnaire for patient participation in medical decision-making, and the kidney disease-related quality of life scale (KDTA) were used to evaluate the self-management ability of the two groups. Satisfaction and quality of life. Results After the intervention, fluid intake, weight gain between dialysis intervals, and the number of dialysis-related complications in the observation group decreased significantly (P&lt;0.05), while the number of dialysis-related complications in the control group decreased (P&lt;0.05), but fluid The intake and weight gain between dialysis intervals were similar to those before the intervention (P&gt;0.05), and the fluid control in the observation group improved more significantly than the control group after the intervention (P&lt;0.05). After the intervention, the systolic and diastolic blood pressure of the observation group decreased significantly (P&lt;0.05), and the systolic and diastolic blood pressure of the control group were similar to those before the intervention (P&gt;0.05). The blood pressure of the observation group improved more significantly than the control group after the intervention (P&lt;0.05). After the intervention, the two groups of SMSH scale scores (problem solving, self-care, partnership, emotional processing, etc.), satisfaction scores (information, communication and negotiation, decision-making, total satisfaction and confidence, etc.), quality of life scores (symptoms, kidney disease, etc.) The impact of kidney disease, the burden of kidney disease, work status, cognitive function, social quality, sleep, social support, etc.) have been greatly improved (P&lt;0.05), and the SMSH scale score, satisfaction score, quality of life of the observation group after intervention The score improved more significantly than the control group (P&lt;0.05). Conclusion Intervention of maintenance hemodialysis patients based on an individualized management model of SDM can improve the self-management ability and satisfaction of patients, improve the quality of life, and reduce the occurrence of adverse events and complications.

Aspects of Medication and Patient participation\u2014an Easy guideLine (AMPEL). A conversation guide increases patients\u2019 and physicians\u2019 satisfaction with prescription talks

Patients want more information and active participation in medical decisions. Information and active participation correlate with increased adherence. A conversation guide, combining patient-relevant drug information with steps of shared decision-making, was developed to support physicians in effective and efficient prescription talks. Six GP trainees in community-based primary care practices participated in a controlled pilot study in sequential pre-post design. Initially, they conducted 41 prescription talks as usual, i.e., without knowing the guide. Then, they conducted 23 talks considering the guide (post-intervention phase). Immediately after the respective talk, patients filled in a questionnaire on satisfaction with the information on medication and physician–patient interaction, and physicians about their satisfaction with the talk and the application of the guide. Patients felt better informed after guide-based prescription talks (e.g., SIMS-D in median 10 vs. 17, p < 0.05), more actively involved (KPF-A for patient activation 2.9 ± 0.8 vs. 3.6 ± 0.8, p < 0.05), and more satisfied with the physician–patient interaction. Physicians rated the guide helpful and feasible. Their satisfaction with the conversation was significantly enhanced during the post-intervention phase. The evaluation of the duration of the talk was not influenced. Enhanced patients’ and physicians’ satisfaction with prescription talks encourages further examinations of the conversation guide. We invite physicians to try our guide in everyday medical practice.

Engaging Women with Limited Health Literacy in Mammography Decision-Making: Perspectives of Patients and Primary Care Providers.

Limited health literacy is a driver of cancer disparities and associated with less participation in medical decisions. Mammography screening decisions are an exemplar of where health literacy may impact decision-making and outcomes. To describe informational needs and shared decision-making (SDM) experiences among women ages 40-54 who have limited health literacy and primary care providers (PCPs). Qualitative, in-depth interviews explored experiences with mammography counseling and SDM. Women ages 40-54 with limited health literacy and no history of breast cancer or mammogram in the prior 9months were approached before a primary care visit at a Boston academic, safety-net hospital. PCPs practicing at this site were eligible for PCP interviews. Interviews were audio-recorded and transcribed verbatim. A set of deductive codes for each stakeholder group was developed based on literature and the interview guide. Inductive codes were generated during codebook development. Codes were compared within and across patient and PCP interviews to create themes relevant to mammography decision-making. The average age of 25 interviewed patients was 46.5; 18 identified as black, 3 as Hispanic, 2 as non-Hispanic white, and 2 had no recorded race or ethnicity. Of 20 PCPs, 15 were female; 12 had practiced for >5years. Patients described a lack of technical (appropriate tests and what they do) and process (what happens during a mammogram visit) knowledge, viewing these as necessary for decision-making. PCPs were reluctant to engage patients with limited health literacy in SDM due to time constraints and feared that increased information might confuse patients or deter them from having mammograms. Both groups felt pre-visit education would facilitate mammography-related SDM during clinical visits. Both patients and PCPs perceived a need for tools to relay technical and process knowledge about mammography prior to clinical encounters to address the scope of information that patients with limited health literacy desired.

Influence of Health Literacy on Effects of Patient Rating Websites: Survey Study Using a Hypothetical Situation and Fictitious Doctors.

BackgroundPhysician rating websites (PRWs) are a device people use actively and passively, although their objective capabilities are insufficient when it comes to judging the medical performance and qualification of physicians. PRWs are an innovation born of the potential of the Internet and boosted very much by the longstanding policy of improving and encouraging patient participation in medical decision-making. A mismatch is feared between patient motivations to participate and their capabilities of doing so well. Awareness of such a mismatch might contribute to some skepticism of patient-written physician reviews on PRWs.ObjectiveWe intend to test whether health literacy is able to dampen the effects that a patient-written review of a physician’s performance might have on physician choice.MethodsAn experiment was conducted within a survey interview. Participants were put into a fictitious decision situation in which they had to choose between two physicians on the basis of their profiles on a PRW. One of the physician profiles contained the experimental stimulus in the form of a friendly and a critical written review. The dependent variable was physician choice. An attitude differential, trust differential, and two measures of health literacy, the newest vital sign as an example of a performance-based measure and eHealth Literacy Scale as an example of a perception-based measure, were tested for roles as intermediary variables. Analysis traced the influence of the review tendency on the dependent variables and a possible moderating effect of health literacy on these influences.ResultsReviews of a physician’s competence and medical skill affected participant choice of a physician. High health literacy dampened these effects only in the case of the perception-based measure and only for the negative review. Correspondingly, the effect of the review tendency appeared to be stronger for the positive review. Attitudes and trust only affected physician choice when included as covariants, considerably increasing the variance explained by regression models.ConclusionsFindings sustain physician worries that even one negative PRW review can affect patient choice and damage doctors’ reputations. Hopes that health literacy might raise awareness of the poor basis of physician reviews and ratings given by patients have some foundation.

Chaplaincy Care in the MICU: Describing the Spiritual Care Provided to MICU Patients and Families at the End of Life.

Gravely ill patients admitted to the intensive care unit (ICU), and their families experience acute spiritual and existential needs and often require complex decisions about their care. Little is known about what constitutes chaplaincy care for patients or families in ICUs. Chaplains report that participation in medical decision-making is part of their role. To describe the spiritual care provided to patients and their families in the ICU. This was a retrospective observational study of spiritual care for patients and families in the medical ICUs (MICUs) at 4 medical centers over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information (number of visits, length of visit, chaplain categories, and type of spiritual care provided). Of the 254 patients, 197 (78%) received a total of 485 spiritual care visits. Seventy-seven percent of visits included provision of emotional/spiritual support; only 15% included decision-making support such as family meetings or goals-of-care conversations. The proportion receiving spiritual care increased as patients neared death or discharge. Staff chaplains were involved in goals-of-care conversations to a greater extent than student or part-time chaplains (P < .05). Spiritual care was provided to most patients and/or families at the end of life. Low chaplain involvement in decision-making in the MICU suggests opportunities to improve chaplains' contributions to ICU care.

Abstract P6-12-06: Shared decision making (SDM) in routine care treatment of breast cancer patients - A survey of patients following surgery

Abstract Introduction: The aim of shared decision making (SDM) is a treatment decision in which patients are meaningfully involved. Many preference-sensitive decisions have to be made in breast cancer treatment and little is known about the implementation of SDM. We therefore investigated the process of SDM in routine care treatment. Methods: All breast cancer patients who underwent surgery in four German breast centers between 07/2016 and 07/2018 were invited to take part. The experienced decision-making process was assessed using the German version of the 9-item SDM questionnaire (PEF-FB-9). Furthermore, satisfaction with care with focus on patient participation was assessed using the ZAPA questionnaire. PEF-FB-9 and ZAPA items were summed up and transformed into a total score ranging from 0 to 100. The higher the total score the higher the experienced degree of participation and satisfaction, respectively. Participants were asked to separately rate decision-making consultations with their inpatient hospital doctors, outpatient gynecologists, outpatient oncologists and primary care providers (PCP). In addition, satisfaction with decision, participation preferences as well as other items for the complete decision process were queried. Results: Of 1,068 approached patients, 563 with a median age of 62 (31-92) filled in the survey (response rate: 53%). 81% had breast conserving surgery, 19% mastectomy. Consultations were assessed most often for hospital doctors (n=484). Gynecologists (n=270), oncologists (n=174) and PCP (n=64) were evaluated less often. Hospital doctors (mean (M): 75, standard deviation (SD): 22) and oncologists (M: 74, SD: 22) achieved the highest PEF-FB-9 scores indicating the highest degree of SDM. Gynecologists and PCP were rated almost as good with mean scores of 71 (SD: 23) and 69 (SD: 28), respectively. The mean score for all groups of doctors was 74 (SD: 21), less than 4% of patients reported SDM scores &amp;lt;25. The values for satisfaction with decision were distributed as follows: PCP (M: 90, SD: 16), hospital doctors (M: 89, SD: 16), oncologists (M: 89, SD: 17), gynecologists (M: 85, SD: 22). Conclusions: Overall, patients reported to have experienced SDM in many situations where treatment decisions were necessary. Patients were quite satisfied with the quality of information and their participation in medical decisions. However, we do not know whether non-respondents might have had different experiences regarding their treatment decision-making. Citation Format: Rudolf Weide, Isabelle Scholl, Jan Dünnebacke, Marcus Schmidt, Arno Franzen, Walter Ernst, Ilhan Saka, Heike Spaderna, Stefan Feiten. Shared decision making (SDM) in routine care treatment of breast cancer patients - A survey of patients following surgery [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P6-12-06.

Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer.

While patient-centered care is recommended as a key dimension for quality improvement, in case of serious illness, patients may have different expectations regarding information and participation in medical decision-making. In oncology, anticipation of disease worsening remains difficult, especially when patient's preferences towards prognosis medical information are unclear. Valid tools to explore patients' preferences could help targeting end-of-life discussions, which have been shown to decrease aggressiveness of end-of-life care. Our aim was to establish the validity and reliability of the French version of the Autonomy Preference Index (API) among patients with incurable cancer and in primary care setting. Three supplementary items were specifically developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer. The psychometric properties of the API translated into French were assessed among patients consecutively recruited from January to March 2017 in the waiting rooms of 19 general practitioners (N = 391) and in an oncology (N = 187) clinic in Paris. Relationships between the newly-developed items and the API subscale scores were studied. A three correlated factors confirmatory model (two factors related to decision-making and a factor related to information-seeking preferences) showed an acceptable fit on the whole sample and no measurement invariance issue was found across settings, age, sex and educational level. Internal consistency and test-retest reliability were acceptable for the information-seeking and decision-making subscales. One of the newly-developed items on patients' ability to anticipate a decision on the use of artificial respiration if a sudden deterioration of their illness occurred was not related to the API subscale scores. The French version of the API was found valid and reliable for use in general practice and oncology settings. The additional items on patient preparedness to anticipate disease deterioration can be of interest to ensure that patient values guide all end-of-life clinical decisions.