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Background: Shared decision-making supports women's choices in pregnancy. Women with high body mass index (≥35 kg/m 2 ) experience a high rate of interventions in pregnancy, labour, and birth, providing an opportunity for clinicians to implement shared decision-making in practice. However, weight stigma may limit women's opportunities for shared decision-making., Aim: To understand how pregnant women with high body mass index perceive their involvement in antenatal decision-making, including whether weight stigma influences their experience., Methods: Women with high body mass index were recruited via purposive sampling from two sites in Melbourne, Australia. Semi-structured interviews were audio-recorded, transcribed, and analysed using reflexive thematic analysis., Findings: Ten pregnant women consented to participate. Three themes and six sub-themes were identified. These were: 1) Trusting the system, 2) Who takes the lead?, and 3) Defying disease., Discussion: Shared decision-making is limited for women with high body mass index in antenatal care, and weight stigma is experienced by women. Clinical practice recommendations relating to excess weight have the potential to further limit women's involvement in decision-making if adequate support is not provided to ensure women's understanding and involvement in care., Conclusion: Women's involvement in care is a central component of shared decision-making and it is currently limited for women with high body mass index. Transparency regarding the rationale for recommendations is required, and further work must be done to address the influence and impact of weight stigma on the care of women with high body mass index., Competing Interests: Conflict of Interest Linda Sweet has editorial duties with this journal. To reduce any real or perceived conflict of interest, she had no role in the processing or peer review of this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Introduction: Quality in health services is increasingly associated with enabling patients to participate in their own health and healthcare by recognising their resources and needs. Despite a growing recognition as to whether such participation is enabled, little is known regarding opportunities for preference-based patient participation in orthopaedic care., Aims: To investigate preference-based participation for patients in orthopaedic care due to hip surgery., Methods: Patients across 17 Swedish orthopaedic units who had had hip surgery, due to hip fracture or osteoarthritis, January-April 2021 were invited to complete the validated 4Ps questionnaire. Of 1514 patients, 458 patients returned the questionnaire with reports on their preferences for and experiences of participation. Each of the 4Ps' 12 items were analysed separately using descriptive and comparative statistics., Results: A complete match in preferences for, and experiences of, participation was achieved with variation between items for 41%-50% of the patients; if almost matches were included, this occurred for 57%-77% of the patients. Less participation than preferred was most common in terms of having had reciprocal communication, opportunities for partaking in planning, and in learning how to manage symptoms/issues. Hip fracture surgery was significantly associated with experiencing lower levels of participation than preferred., Conclusion: Though standardised care promotes efficient hip surgery care, our study suggests a need for more person-centred opportunities to engage. A discrepancy was noted between patients' resources and preparation for their participation in and beyond the hip surgery process, particularly for self-care activities, calling for better use of nursing resources. ID: NCT04700969 with the U.S National Institutes of Health Clinical Registry., Competing Interests: Declaration of competing interest The authors declare no known competing financial interest or personal relationship that could have influenced the work reported in this paper. The 4Ps is protected by copyright but may be available for free after discussion with the last author., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: To gain insight into the emotions, cognitions, and behaviours experienced by people with chronic low back pain (CLBP) undergoing invasive treatment in a pain unit., Design: A cross-sectional qualitative study based on individual interviews. This study included patient involvement in its design and development., Methods: An interpretative phenomenological approach was adopted to understand the multidimensional experience of patients. The interview script was a translated, adapted, and expanded version of the one proposed by Cognitive and Functional Therapy. A mixed coding method was applied to structure the interviews. Three themes were created, with the three most frequently reported emotions, cognitions, and behaviours as subthemes. A patient with CLBP approved the initial protocol and the aim of the study. Subsequently, the patient contributed questions to the interview script, checked the coding process, and approved the final version of the manuscript., Results: Twenty-two patients undergoing epidural infiltrations in a pain unit were interviewed. (i)"Fears", (ii)"Frustration", and (iii)"Worry" were the three most commonly expressed emotions. Cognitions related to (i)"Pain predictability", (ii)"Pain description and perception", and (iii)"Pain interference/disability" were also widely reported. The theme "Behaviours" was composed of the following subthemes: (i)"Strategies for managing symptoms", (ii)"Social behaviours", and (iii)"Strategies for coping with daily tasks". Noteworthily, cognitions related to the (i)"Diagnosis", (ii)"Health system attention", and (iii)"Medical prescriptions" arose from questions provided by patient involvement., Conclusion: Patients with CLBP expressed a wide variety of emotions, cognitions, and behaviours that must be considered by health professionals with the goal of providing the best patient-centred care., Competing Interests: Declaration of competing interest None., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Objective: To explore the relationship between personal characteristics of older adults with multiple chronic conditions (MCCs) and perceived shared decision making (SDM) resp. decisional conflict., Methods: In a video-observational study (N = 213) data were collected on personal characteristics. The main outcomes were perceived level of SDM and decisional conflict. The mediating variable was participation in the SDM process. A twostep mixed effect multilinear regression and a mediation analysis were performed to analyze the data., Results: The mean age of the patients was 77.3 years and 56.3% were female. Health literacy (β.01, p < .001) was significantly associated with participation in the SDM process. Education (β = -2.43, p = .05) and anxiety (β = -.26, p = .058) had a marginally significant direct effect on the patients' perceived level of SDM. Education (β = 12.12, p = .002), health literacy (β = -.70, p = .005) and anxiety (β = 1.19, p = .004) had a significant direct effect on decisional conflict. The effect of health literacy on decisional conflict was mediated by participation in SDM., Conclusion: Health literacy, anxiety and education are associated with decisional conflict. Participation in SDM during consultations plays a mediating role in the relationship between health literacy and decisional conflict., Practice Implications: Tailoring SDM communication to health literacy levels is important for high quality SDM., Competing Interests: Declaration of Competing interest The authors declare that they have no competing interests., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Research Question: From the perspectives of healthcare professionals (HCPs) and people with chronic obstructive pulmonary disease (COPD) known to tertiary care, what influences successful referrals to a pulmonary rehabilitation program (PRP)?, Methods: This cross-sectional qualitative study was informed by a critical realist perspective. We purposively sampled people with COPD and HCPs who deliver COPD care and used semi-structured interviews and focus groups to explore determinants of a successful referral to a PRP. Interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis., Results: Data were available on 38 HCPs and 15 people with COPD. We generated three core themes pertaining to successful referrals. The first theme was that HCPs should be mindful of how professional responsibilities (such as their personal value and interest in a PRP, their degree of understanding of PRPs, and the organisational culture the PRPs are embedded within) shape decision-making during a therapeutic interaction. The second theme, there's more to me than my COPD, characterised psychological perceptions that shape a person's readiness to engage in a PRP. The third theme, communication is a two-way street that requires careful navigation, characterised the interpersonal dynamic between HCP and patient, and how dedicated conversations about PRPs can encourage successful referrals., Conclusion: Therapeutic interactions that include dedicated conversations about PRPs can foster successful referrals among people with COPD. During these interactions, HCPs should take the time to understand and carefully unpack psychological perceptions whilst imparting value, interest and enthusiasm for PRPs. Doing so can shape patient engagement toward referral success., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objectives: To 1) examine the willingness of residents to undertake shared decision-making and 2) explore whether the willingness to engage in shared decision-making is influenced by the perceived stakes of a clinical situation., Methods: Sequential mixed methods design. Phase One: Family Medicine residents completed IncorpoRATE, a seven-item measure of clinician willingness to engage in shared decision making. Mean IncorpoRATE scores were calculated. Phase Two: We interviewed residents from phase one to explore their perceptions of high versus low stakes situations. Transcripts were analyzed using qualitative content analysis., Results: IncorpoRATE scores indicated a greater willingness to engage in shared decision-making when the stakes of the decision were perceived as low (7.59 [2.0]) compared to high (4.38 [2.5]). Interviews revealed that residents held variable views of the stakes of similar clinical decisions., Conclusion: Residents are more willing to engage in shared decision-making when the stakes of the situation are perceived to be low. However, the interpretation of the stakes of clinical situations varies., Practical Implications: Further research is needed to explore how shared decision making is understood by residents in Family Medicine and when they view the process of shared decision-making to be most appropriate., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Objectives: This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer., Methods: Seventeen couples participated. Semi-structured interviews were conducted on couples' joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale., Results: Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers., Conclusions: Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement., Practice Implications: Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Objective: Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient's appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients' perceptions of undergoing LT evaluation., Methods: We performed fourteen 30-45 min, semi-structured interviews between 3/2021-5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes., Results: Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients' lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes., Conclusion: LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients., Practical Implications: This work can inform targeted interventions for increasing patient engagement during the LT evaluation process., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests. Alexandra Strauss reports financial support was provided by National Institute of Diabetes and Digestive and Kidney Diseases. Dorry Segev reports financial support was provided by National Institute of Allergy and Infectious Diseases. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Objectives: Through the lens of self-determination theory, this quantitative study investigates how patient-provider collaboration through perceived shared decision-making (SDM) and autonomy support impact type 2 diabetes (T2D) outcomes., Methods: We sampled 474 individuals over 18 years old who self-identified as having T2D. Completed and valid responses were received from 378 participants from two separate groups in an online survey. Data was analyzed using the IBM Statistical Package for Social Sciences (SPSS), AMOS package, version 28, and Mplus, version 8.8., Results: Patient-provider collaboration through autonomy support improved treatment satisfaction (β = .16, ρ < .05) and self-management adherence (β = .43, ρ < .001). While collaboration through SDM improved treatment satisfaction (β = .25, ρ < .01), it worsened SM adherence (β = -.31, ρ < .001). The negative impact of SDM on self-management adherence was mitigated by our moderator, coping ability. However, coping ability minimally impacted treatment satisfaction and SM adherence when autonomous support was provided., Conclusions: Autonomy support increases treatment satisfaction and self-management adherence. SDM enhances treatment satisfaction but may adversely affect self-management adherence. The study also suggests that coping ability can mitigate the negative effect of SDM on self-management adherence, although its influence is limited when autonomy support is provided by the provider., Practical Implications: For providers, SDM and autonomy support permits shared power over treatment decisions while fostering independence over self-management tasks. Providers should evaluate patients' coping ability and adapt their approach to care based on the patient's coping capacity., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Introduction: Shared decision making (SDM) has become a crucial element on the political agenda and represents a vital aspect of modern healthcare. However, successful implementation of SDM highly depends on the attitude of clinicians towards SDM. The overall aim of our study was to explore the experience of oncologists and nurses with SDM using the Decision Helper, an in-consultation decision aid, at four Danish radiotherapy departments., Methods: Semi-structured interviews were conducted with 20 clinicians. The participants were selected using purposive sampling to include nurses and oncologists, male and female, with different levels of experience with SDM and clinical work. The analysis was a data-driven, iterative process with inductive coding of all interviews and meaning condensation., Results: Two main themes emerged: "Using the Decision Helper changes the consultation" and "Change of attitude among Danish oncologists." Each of the two themes included four elaborative subthemes, which are reported with supporting citations in this paper. In brief, the use of SDM and the Decision Helper should ideally be adjusted to the individual patient and depends highly on the oncologist. The participants described ambitions towards "making the right decision for this patient at this time." The healthcare system, however, has pitfalls that may hinder SDM, e.g., rigid interpretation of guideline-based recommendations., Conclusion: Using an in-consultation Decision Helper has the potential for individualized, structured patient engagement in decision making. There is a need for patient decision aids in clinical guidelines to ensure patient engagement in decision making., Competing Interests: Disclosure The authors have no conflicts of interest to declare., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To explore the considerations and barriers to implementing shared decision-making (SDM) in infertility treatment among female infertility patients, their male spouses, and fertility clinicians., Methods: Participants were recruited from a reproductive medicine hospital in China's Shandong Province using purposive sampling. One-on-one interviews were held with female infertility patients and their spouses. In addition, a focus group discussion was conducted with fertility clinicians. Data analysis was subjected to open, axial, and selective coding., Results: Nineteen female infertility patients and 10 male spouses were interviewed one-on-one. Five clinicians participated in the focus group discussion. Most female patients wanted to participate in the decision-making process, and that spouses and fertility clinicians supported SDM. Furthermore, key barriers were identified from the perspectives of multiple stakeholders, including communication difficulties, psychological pressure on female patients, patient preferences, multiple treatment stages, male spousal participation, clinician-patient trust, and subjective patient factors., Conclusions/practice Implications: This study explored the considerations of and barriers to implementing SDM in infertility treatment. Key barriers were identified from the perspectives of multiple stakeholders. Based on the findings, clinicians should encourage patients and their spouses to actively participate in decision-making, and provide objective and realistic guidance., Competing Interests: Declaration of Competing Interest The authors did not report any potential conflicts of interest., (Copyright © 2023 Elsevier B.V. All rights reserved.)

Background: People with mental disorders exhibit increased mortality due to colorectal cancer, despite having a similar incidence to the general population. We aimed to evaluate the extent to which people with mental disorders participate in organised colorectal cancer screening., Methods: We conducted a population-based cohort study of all Danish residents aged 50-74 years who were invited to undergo biennial faecal immunochemical testing between March 1, 2014, and Sept 30, 2018. We used national registry data from all first-time invitees. The primary endpoint was participation within 90 days of invitation. We calculated the proportion who participated and assessed their screening results and adherence to and completeness of follow-up colonoscopy according to their history of mental disorders, classified as none, mild or moderate, or severe. We computed crude and adjusted participation differences in percentage points and participation ratios using the pseudo-observations method., Findings: Of 2 036 704 people who were invited, we included 2 036 352 in the final cohort, of whom 1 008 045 (49·5%) were men and 1 028 307 (50·5%) were women, with a mean age of 60·7 years (SD 8·3, range 49-78). Data on ethnicity were not collected. Compared with people with no mental disorders, the adjusted analysis showed lower participation among people with mild or moderate mental disorders (men: participation difference -4·4 percentage points [95% CI -4·7 to -4·1]; women: -3·8 percentage points [-4·1 to -3·6]) and severe mental disorders (men: participation difference -13·8 percentage points [-14·3 to -13·3]; women: -15·4 percentage points [-15·8 to -14·9]). People with mental disorders had a higher proportion of positive faecal immunochemical test results, lower adherence to colonoscopy, and more incomplete colonoscopies than people without mental disorders., Interpretation: People with mental disorders were less likely to participate in colorectal cancer screening than those without these disorders. Patients with mental disorders could benefit from support or encouragement from their general practitioner or mental health-care facility to participate in cancer screening. Potential interventions should consider type of mental disorder, as needs might differ., Funding: Danish Cancer Society, Danish Health Foundation., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

Objectives: Examine the association of coder ratings of cardiologist behaviors and global scores of cardiologist communication style with patient participation in clinic encounters., Methods: We coded transcripts of clinic encounters for patient participatory behaviors: asking questions, assertive statements, and expressing negative emotions; clinician behavior counts: reflective statements, open-ended questions, empathic statements, and eliciting questions. We used general linear regression models to examine associations of mean number of patient participatory behaviors with clinician behaviors., Results: Our sample included 161 patients of 40 cardiologists. Patient female gender was associated with on average 2.1 (CI: 0.06, 4.1; p = 0.04) more patient participatory behaviors. In an adjusted model, clinician reflective statements were associated with on average 0.3 (CI: 0.04, 0.4; p = 0.02) more patient participatory behaviors. A clinician making at least one empathic statement was associated with on average 3.7 (CI: 0.2, 7.1; p = 0.04) more patient participatory behaviors., Conclusions: These results demonstrate that some individual clinician behaviors are associated with higher patient participation in cardiology encounters., Practice Implications: Clinician reflective and empathic statements may be important targets in communication training to increase patient participation., Section: Communication Studies., Competing Interests: Declaration of Competing Interest The authors declare no competing interests., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Objectives: Public and patient engagement (PPE) is increasingly recognized in policy statements as essential to achieving transformation towards patient-centred, value-based, integrated care. Despite extensive research over two decades, important gaps and questions remain around how the efforts invested in engagement drive the changes needed to meet these objectives., Methods: We conducted a meta-narrative review of systematic and scoping reviews to understand persistent difficulties and uncertainties in this research domain. Thirty-eight reviews looking at studies of PPE in care, healthcare organizations and systems were appraised. We synthesized the expectations of PPE that prompted each review, the guiding ideas about how PPE comes about, main findings and the questions and gaps they raise., Results: Four storylines are found in reviews: 1. Terminology is inconsistent and concepts are weak; 2. Outcomes of care can be improved 3. Influence on healthcare delivery and design is uncertain; 4. Characteristics of engagement efforts are consequential., Discussion and Practice Implications: Three assumptions underlie these storylines and appear as barriers to practice and research; alternative approaches based on collaborative governance and theories of change are proposed to understand and support engagement with transformative potential., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Background: Insufficient attention has been devoted to shared decision-making (SDM) in the setting of acute brain injury (ABI). Communication occupies a central role that has been highlighted in recent research on SDM with brain injured patients, with respect to "the impact of specific clinician words and expressions". In this investigation, we seek to understand lay public understandings of the term "coma.", Methods: Qualitative analysis of lay interpretations of the term "cComa" using modified open coding of a free-text response question at the end of a survey exploring public attitudes in the context of hypothetical ABI. Respondents (n = 511) were drawn from a convenience sample using Amazon Mechanical Turk. This analysis focuses on respondents' free-text responses to the question: "When doctors say a patient is in a coma, what does that mean?", Results: We analyzed 206 unique responses in order to derive emergent lay conceptualizations of coma. The following 4 themes emerged in how respondents understood coma: (1) State descriptive. (2) Marker of injury severity. (3) As in distinction (or lack thereof) from brain death or sleep. (4) Covert consciousness. For each concept, we discuss its salient elements and offer representative quotes., Conclusions: This study provides preliminary qualitative evidence of lay public understandings of the neurologic term "coma". These findings can have implications for surrogate/family-clinician communications. While a physician may intend "coma" to convey a technical description, a family member or surrogate may interpret it as a very different activity (e.g., prognostication, emotional signaling), setting the stage for miscommunication., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Background: We conducted a feasibility study of integrating a free, online patient health community, PatientsLikeMe (PLM), into the neo/adjuvant care of older patients recently diagnosed with breast cancer. We assessed whether PLM was an appealing social forum to improve women's treatment experience during this stressful and often isolating time., Patients and Methods: We enrolled women ages ≥60 years with recently diagnosed nonmetastatic invasive breast cancer at a single center. Our primary endpoint was feasibility of patient engagement with PLM, with successful engagement defined as using PLM for ≥50% of the total weeks of one's chemotherapy course or 4 months (if receiving hormonal and/or radiation therapy). Participants were surveyed about their health, social support, and experiences., Results: During February 8, 2016 to June 25, 2018, 47 women enrolled; 14.9% were ages 71 to 75 years and 8.5% were ages ≥76 years; 63.8% received chemotherapy. Two women withdrew after consent; 45 were included in analyses. Overall, 1 (2.2%) patient met the feasibility endpoint, although 8 (17.8%) met engagement criteria for ≥25% of weeks on study. Over time, women submitted a total of >1200 posts to the "InstantMe" feature (rates how they feel) and >130 "MyFeed" stories. Evaluation of satisfaction with PLM was limited by the small number of end-of-study surveys., Conclusion: Although our online social support intervention did not meet the prespecified criteria for feasibility (required sustained PLM utilization), many engaged with PLM. Future interventions should explore ways we can optimally support older patients, who have an increasing access to technology while facing threats of social isolation., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Aims: Many veterans of the 1990-1991 Gulf War Era (GWE) have experienced poorly understood health issues. In response to challenges recruiting this population for research, we conducted focus groups and semi-structured phone interviews with GWE veterans and subject matter experts (SMEs) to explore GWE veterans' perceptions about research., Main Methods: Transcribed discussions were content-analyzed. Participants discussed research-related motivators and barriers identified among other populations, and nuances that may be specific to GWE veterans., Key Findings: Examples of motivating factors included: seeking answers about causes of and treatment for health issues; helping oneself; and helping other veterans. Examples of barriers included: distrust and dissatisfaction with federal entities; lack of research follow-through; and concerns about privacy and confidentiality., Significance: Researchers can use this information to better address GWE veterans' concerns and motivate them to participate in research. Inclusion of GWE veterans in research will allow researchers and clinicians to better understand and address health issues affecting this population., (Copyright © 2021. Published by Elsevier Inc.)

Background: The COVID-19 pandemic forced cystic fibrosis (CF) care programs to rapidly shift from in-person care delivery to telehealth. Our objective was to provide a qualitative exploration of facilitators and barriers to: 1) implementing high-quality telehealth and 2) navigating reimbursement for telehealth services., Methods: We used data from the 2020 State of Care CF Program Survey (n=286 U.S. care programs) administered in August-September to identify two cohorts of programs, with variation in telehealth quality (n=12 programs) and reimbursement (n=8 programs). We conducted focus groups and semi-structured interviews with CF program directors and coordinators in December 2020, approximately 9 months from onset of the pandemic. We used the Consolidated Framework for Implementation Research to identify facilitators and barriers of implementation, and inductive thematic analysis to identify facilitators and barriers of reimbursement., Results: Factors differentiating programs with greater and lower perceived telehealth quality included telehealth characteristics (perceived advantage over in-person care, cost, platform quality); external influences (needs and resources of those served by the CF program), characteristics of the CF program (compatibility with workflows, relative priority, available resources); characteristics of team members (individual stage of change), and processes for implementation (engaging patients and teams). Reimbursement barriers included documentation to optimize billing; reimbursement of multi-disciplinary team members, remote monitoring, and telephone-only telehealth; and lower volume of patients., Conclusions: A number of factors are associated with successful implementation and reimbursement of telehealth. Future efforts should provide guidance and incentives that support telehealth delivery and infrastructure, share best practices across CF programs, and remove barriers., (Copyright © 2021. Published by Elsevier B.V.)

Background: Cystic fibrosis (CF) care programs in the United States rapidly adopted telehealth during the COVID-19 pandemic. Understanding factors that promote or impede telehealth will inform planning for future telehealth-enabled care models., Methods: Adult, pediatric, and affiliate CF care programs in the United States (n = 287) were surveyed twice eight months apart in 2020-2021 about telehealth use. Programs were asked to describe barriers to and promoters of telehealth., Results: Ninety-seven percent of programs provided telehealth services. In the first CF Care Program State of Care Survey (SoC1), programs estimated that 57% of patients exclusively received in-person care, 36% of patients received telehealth by phone/computer with video, and 8% of patients received telephone-only care. In the second CF Care Program State of Care Survey (SoC2), programs estimated that 80% of visits were in-person and 15% were via audio and video telehealth. Pediatric programs (21%) were less likely than adult (37%) or affiliate (41%) programs to recommend telehealth (p = 0.007). All programs ranked lack of internet access as the highest barrier to patient engagement with telehealth. Promoters of telehealth were increased accessibility and avoidance of infection transmission. Top ranked changes to improve telehealth were expanded provision of remote monitoring devices and technology access. Similar proportions of program types anticipated institutional telehealth expansion., Conclusion: During the COVID-19 pandemic, CF programs in the United States identified factors to improve future care delivery via telehealth. Targeting specific barriers and promoters will improve the use and quality of telehealth throughout the care center network., (Copyright © 2021. Published by Elsevier B.V.)

Background: During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care., Methods: The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence., Results: 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth., Conclusions: PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care., Competing Interests: Declaration of Competing Interest There are no conflicts of interest., (Copyright © 2021. Published by Elsevier B.V.)

Background: For many patients with advanced cancer, the decision whether to participate in early phase clinical trials or not is complex. The decision-making process requires an in-depth discussion of patient values. We therefore aimed to synthesize and describe patient values that may affect early phase clinical trial participation., Methods: We conducted a systematic search in seven electronic databases on patient values in relation to patients' decisions to participate in early phase clinical cancer trials., Results: From 3072 retrieved articles, eleven quantitative and five qualitative studies fulfilled our inclusion criteria. We extracted ten patient values that can contribute to patients' decisions. Overall, patients who seek trial participation usually report hope, trust, quantity of life, altruism, perseverance, faith and/or risk tolerance as important values. Quality of life and humanity are main values of patients who refuse trial participation. Autonomy and social adherence can be reported by both trial seekers or refusers, dependent upon how they are manifested in a patient., Conclusions: We identified patient values that frequently play a role in the decision-making process. In the setting of discussing early phase clinical trial participation with patients, healthcare professionals need to be aware of these values. This analysis supports the importance of individual exploration of values. Patients that become aware of their values, e.g. by means of interventions focused on clarifying their values, could feel more empowered to choose. Subsequently, healthcare professionals could improve their support in a patients' decision-making process and reduce the chance of decisional conflict., (Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Objective: To describe patient perspectives on recruitment and retention in clinical trials., Study Design and Setting: Systematic review of qualitative studies that reported the perspective of adult patients with any health condition who accepted or declined to participate in clinical trials., Results: Sixty-three articles involving 1681 adult patients were included. Six themes were identified. Four themes reflected barriers: ambiguity of context and benefit - patients were unaware of the research question and felt pressured in making decisions; lacking awareness of opportunities - some believed health professionals obscured trials opportunities, or felt confused because of language barriers; wary of added burden - patients were without capacity because of sickness or competing priorities; and skepticism, fear and mistrust - patients feared loss of privacy, were suspicious of doctor's motivation, afraid of being a guinea pig, and disengaged from not knowing outcomes. Two themes captured facilitators: building confidence - patients hoped for better treatment, were supported from family members and trusted medical staff; and social gains and belonging to the community - altruism, a sense of belonging and peer encouragement motivated participation in trials., Conclusion: Improving the visibility and transparency of trials, supporting informed decision making, minimizing burden, and ensuring confidence and trust may improve patient participation in trials., (Copyright © 2021. Published by Elsevier Inc.)

Background: Alcohol use disorder (AUD) reduces the health of soldiers and the readiness of the Armed Forces. It remains unknown if engagement in substance use treatment in the Military Health System improves retention in the military., Methods: The sample consisted of active duty soldiers returning from an Afghanistan/Iraq deployment in fiscal years 2008-2010 who received an AUD diagnosis within 150 days of completing a post-deployment health re-assessment survey (n = 4,726). A Heckman probit procedure was used to examine predictors of substance use treatment initiation and engagement in accordance with Healthcare Effectiveness Data and Information Set (HEDIS) criteria. Cox proportional hazard modeling was used to examine the association between treatment engagement and retention, defined as a negative separation for a non-routine cause (e.g., separation due to misconduct, poor performance, disability) from the military in the two years following the index AUD diagnosis., Results: 40 % of soldiers meeting HEDIS AUD criteria initiated and 24 % engaged in substance use treatment. Among soldiers diagnosed with AUD, meeting criteria for treatment engagement was associated with a significantly higher hazard of having a negative separation compared to soldiers who did not engage in treatment., Conclusions: Rates of initiation and engagement in substance use treatment for post-deployment AUD were relatively low. Soldiers with AUD who engaged in substance use treatment were more likely to have a negative separation from the military than soldiers with AUD who did not engage. Our findings imply that in the study cohort, treatment did not mitigate negative career consequences of AUD., (Published by Elsevier B.V.)

Background and Objective: The Trials within Cohorts design aims to reduce recruitment difficulties and disappointment bias in pragmatic trials. On cohort enrollment, broad informed consent for randomization is asked, after which cohort participants can be randomized to interventions or serve as controls without further notification. We evaluated patients' recollection, understanding, and acceptance of broad consent in a clinical oncology setting., Methods: We surveyed 610 patients with cancer participating in ongoing TwiCs; 482 patients (79%) responded, of which 312 patients shortly after cohort enrollment, 108 patients after randomization to an intervention (12-18 months after cohort enrollment), and a random sample of 62 cohort participants who had not been selected for interventions (1-6 months after cohort enrollment)., Results: Shortly after providing cohort consent, 76% of patients (238/312) adequately remembered whether they had given broad consent for randomization. Of patients randomly offered interventions, 76% (82/108) remembered giving broad consent for randomization; 41% (44/108) understood they were randomly selected, 44% (48/108) were not interested in selection procedures, and 10% (11/108) did not understand selection was random. Among patients not selected for interventions, 42% (26/62) understood selection was random; 89% felt neutral regarding the scenario of "not being selected for an intervention while your data were being used in comparison with patients receiving interventions," 10% felt reassured (6/62) and 2% scared/insecure (2/62)., Conclusion: Patients adequately remember giving broad consent for randomization shortly after cohort enrollment and after being offered an intervention, but recollection is lower in those never selected for interventions. Patients are acceptant of serving as control without further notifications., (Copyright © 2020 The Author(s). Published by Elsevier Inc. All rights reserved.)

Introduction: Oncologists have increasingly been proponents of shared decision making (SDM) to enhance patient outcomes and reduce unnecessary health care spending. However, its effect on patient out-of-pocket costs is unknown. This study investigated the relationship between patient preferences for SDM and financial toxicity (FT) in patients with metastatic breast cancer (MBC)., Patients and Methods: This cross-sectional study utilized surveys of women aged ≥ 18 with MBC who received care at two academic hospitals in Alabama from 2017 to 2019. Patients self-reported their SDM preference (Control Preferences Scale) and FT (Comprehensive Score for Financial Toxicity [COST] tool; 11-item scale, with lower scores indicating worse FT). Effect sizes were calculated using the proportion of variance explained (R 2 ) or Cramer's V. Differences in FT by SDM preference were estimated using mixed models clustered by site and treating medical oncologist., Results: In 95 women with MBC, 44% preferred SDM, 29% preferred provider-driven decision making, and 27% preferred patient-driven decision making. Patients preferring SDM were more often college educated (53% vs. 39%; V = 0.12) with an income greater than $40,000/y (55% vs. 43%; V = 0.18). Overall median COST was 22 (interquartile range, 16-29). After adjusting for patient demographic and clinical characteristics, patients preferring patient-driven decision making trended toward worse FT (COST 17: 95% confidence interval, 12-22) compared to those preferring SDM (COST 19: 95% confidence interval, 15-23) and those preferring provider-driven decision making (COST 22: 95% confidence interval, 17-27)., Conclusion: Patients preferring more patient-driven decision making reported worse FT, although differences did not reach statistical significance. Further research is needed to understand this relationship., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objectives: Colorectal cancer (CRC) is the third most common cancer. Many countries in Europe have already implemented systematic screening programmes as per the recommendations by the European Union. The impact of screening is highly dependent on participation rates. The aim of the study was to identify barriers, facilitators and modifiers to participation in systematised, stool sample-based, publicly financed CRC screening programmes., Study Design: Systematic review., Methods: A systematic search in PubMed, Embase, MEDLINE, CINAHL, Cochrane CENTRAL, Google Scholar and PsycINFO was undertaken. We included both qualitative and quantitative studies reporting on barriers and facilitators (excluding sociodemographic variables) to participation in stool sample-based CRC screening. Barriers and facilitators to participation were summarised and analysed., Results: The inclusion criteria were met in 21 studies. Reported barriers and facilitators were categorised into the following seven themes (examples): psychology (fear of cancer), religion (believing cancer is the will of God), logistics (not knowing how to conduct the test), health-related factors (mental health), knowledge and awareness (lack of knowledge about the test), role of the general practitioner (being supported in taking the test by the general practitioner), and environmental factors (knowing someone who has participated in a screening programme). Six studies reported that non-participation was not due to a negative attitude towards screening for CRC., Conclusion: Many barriers to screening were found. It is important to work with peoples' fear of screening. Moreover, this review suggests that it might be possible to increase participation rates, if the population-wide awareness and knowledge of potential health benefits of CRC screening are increased and proper logistical support is provided., (Copyright © 2020 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.)

Objective: The objective of this study was to explore how bedside micro-decisions were made between conscious patients on mechanical ventilation in intensive care and their healthcare providers., Methods: Using video recordings to collect data, we explored micro-decisions between 10 mechanically ventilated patients and 60 providers in interactions at the bedside. We first identified the types of micro-decisions before using an interpretative approach to analyze the decision-making processes and create prominent themes., Results: We identified six types of bedside micro-decisions; non-invited, substituted, guided, invited, shared and self-determined decisions. Three themes were identified in the decision-making processes: 1) being an observer versus a participant in treatment and care, 2) negotiating decisions about individualized care (such as tracheal suctioning or medication),and 3) balancing empowering activities with the need for energy restoration., Conclusion: This study revealed that bedside decision-making processes in intensive care were characterized by a high degree of variability between and within patients. Communication barriers influenced patients' ability to express their preferences. An increased understanding of how micro-decisions occur with non-vocal patients is needed to strengthen patient participation., Practice Implications: We advise providers to make an effort to solicit patients' preferences when caring for critically ill patients., (Copyright © 2020 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Medication for opioid use disorder (MOUD) can decrease the risk of opioid overdose (OOD) in individuals with opioid use disorder. Peer recovery support services (PRSS) are increasingly used to promote MOUD engagement but evidence of their efficacy is limited. This study's objective was to evaluate a single 20-minute telephone-delivered PRSS intervention for increasing MOUD enrollment and decreasing recurring OODs., Method: This single-site, randomized controlled pilot trial enrolled adults, primarily recruited from a syringe service program, with an opioid-positive urine drug screen (UDS) reporting having been treated for an OOD within the past 6 months. Participants (N = 80) were randomized to PRSS (n = 40) or Control (n = 40) condition with all participants receiving personally-tailored OOD education and naloxone. Outcome measures obtained at 3 (n = 66), 6 (n = 58), and 12 (n = 44) months post-randomization included verified MOUD enrollment (primary), self-reported OOD, and opioid use assessed by self-report and UDS., Results: Through 12-month follow-up, 32.5 % of PRSS, compared to 17.5 % of Control participants enrolled in MOUD (X 2 = 2.4, p = 0.12; odds ratio = 2.27 (0.79-6.49)). PRSS participants were significantly less likely to have experienced an OOD through 12-month follow-up (12.5 % of PRSS participants, 32.5 % of Control, p = 0.03). No significant treatment effect was found for opioid use through 12-month follow-up as measured by either opioid-positive UDSs or self-reported past month opioid use days. Based on self-report, PRSS had good acceptability for both the interventionists and participants., Conclusions: The results suggest that further development and testing of this PRSS telephone intervention to encourage MOUD enrollment and reduce OOD may be warranted., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Background: Previous research has demonstrated that physical activity (PA) levels are lower for youth with Spina Bifida (SB) than their typically developing peers. However, there is a lack of understanding of the barriers to PA among this population., Objective/hypothesis: Using the Theoretical Domains Framework as a guide, the purpose of this study was to qualitatively explore the physical, psychological, social, and environmental factors influencing PA participation among youth with SB., Methods: Nine youth (six females; aged 14-17 years) took part in one, semi-structured individual interview. Transcripts were analysed using thematic analysis to identify barriers and facilitators to PA., Results: Youth identified social influences, impacts on general and mental health, positive affect, activity enjoyment and self-efficacy to be factors that facilitated their participation in PA. The most commonly reported barriers to PA were lack of knowledge, control over decision-making, inaccessible built environments, competing demands on time and pain/fatigue., Conclusion: These findings are the first step to identifying the most salient barriers and facilitators of PA for youth with SB. In turn, these factors can be further tested and targeted in future PA interventions., Competing Interests: Declaration of competing interest This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objectives: Patient-reported outcome measures (PROMs) are widely applied to assess perceived health status. To date, no transplant-specific PROM is available for generating a single, standardized score regarding the health status of transplant recipients. The objective of this study is to generate health items for a new patient-centered PROM for organ recipients: the Transplant PROM (TXP)., Study Design and Setting: A five-phase, mixed-method approach was applied to identify and select the health items: scoping literature review, expert meetings, focus-group meetings with organ recipients, a special judgmental task within an online survey, and expert meetings for final selection of health items., Results: Based on a previously published scoping literature review, a first round of expert meetings, and a total of four focus-group meetings with kidney, lung, and liver transplant recipients (N = 18), a list of 83 relevant health items relating to post-transplant life was selected. In an online survey, 183 transplant recipients selected the 10 most important health items from this list. After evaluating the frequency of selected health items and combining items that assess closely related or similar concepts in the second round of expert meetings, nine health items were chosen to be included in TXP: fatigue, skin, worry/anxiety, self-reliance, activities, weight, sexuality, stooling, and memory/concentration., Conclusion: The nine TXP health items reflect the most prominent issues transplant recipients experience. The TXP can be administered by means of a mobile phone app., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Introduction: It has been said that mental illnesses are characterised by poor decision making; there is some neuroscientific evidence of specific alterations in performance in decision making tests, but little is known about how patients make choices about their own treatments., Methods: Focus groups with patients from two psychiatric clinics, with discourse analysis., Results: Five deductive categories (tools, capacity, therapeutic relationship, method and family and network), plus one additional category from the analysis (stigma), and 35 inductive (posterior) categories were considered. The categories are analysed and the findings presented., Conclusions: Patients express a need for greater participation in decisions about their treatment, and a more symmetrical psychiatrist-patient relationship, involving families. Decisions may be changed due to stigma, barriers to treatment access, and previous experiences., (Copyright © 2019 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España, S.L.U. All rights reserved.)

Objectives: In a growing number of countries, patient involvement in medical decisions is considered a cornerstone of broader health policy agendas. This study seeks to explore public preferences for and experiences with participation in treatment decisions in Hungary., Methods: A nationally representative online panel survey was conducted in 2019. Outcome measures included the Control Preferences Scale for the preferred and actual role in the decision, the 9-item Shared Decision Making Questionnaire, and a Satisfaction With Decision numeric rating scale., Results: A total of 1000 respondents participated in the study, 424 of whom reported having had a treatment decision in the preceding 6 months. Overall, 8%, 18%, 51%, 19%, and 4% of the population preferred an active, semiactive, shared, semipassive, and passive role in decision making, respectively. Corresponding rates for perceived role were as follows: 9%, 15%, 35%, 26%, and 15%. Preferred and perceived roles matched for 52% of the population, whereas 32% preferred more and 16% less participation. Better health status, attaining role congruence, and higher 9-item Shared Decision Making Questionnaire scores were positively associated with satisfaction, accounting for 32% of the variation in Satisfaction With Decision scores (P < .05)., Conclusions: This study represents the first national survey on decisional roles in healthcare in Hungary and, more broadly, in Central and Eastern Europe. Shared decision making is the most preferred decisional role in Hungary; nevertheless, there is still room to improve patient involvement in decision making. It seems that patient satisfaction may be improved through tailoring the decisional role to reflect patients' preferences and through practices that encourage shared decision making., (Copyright © 2020 ISPOR--The professional society for health economics and outcomes research. Published by Elsevier Inc. All rights reserved.)

Objectives: Drawing from social identity threat theory, which posits that stigmatized groups are attuned to situational cues that signal racial bias, we examined how African-American veterans evaluate verbal and non-verbal cues in their mental health encounters. We also explored how their evaluations of perceived racial bias might influence their healthcare engagement behaviors and communication., Methods: We interviewed 85 African-American veterans who were receiving mental health services from the US Department of Veterans Affairs (VA), examining their views and experiences of race in healthcare. We analyzed the data using a constructivist grounded theory approach., Results: Participants identified several identity threatening cues that include lack of racial diversity representation in healthcare settings, and perceptions of providers' fears of Black patients. We describe how participants evaluated situational cues as identity threats, and how these cues affected their engagement behaviors and healthcare communication., Conclusion: Our findings revealed situational cues within clinical encounters that create for Black veterans, fear of being negatively judged based on stereotypes that have characterized African-Americans., Practice Implications: We discuss the implications of these findings and provide suggestions on how to create identity safe environments for minority patients that include delivery of person-centered care, and organizational structures that reduce providers' burnout., Competing Interests: Declaration of Competing Interest The authors declare that they have no competing interests., (Published by Elsevier B.V.)

Objectives: To perform a systematic review of decision regret studies in cancer patients to determine if regret is longitudinally stable, and whether these study structures account for late-emerging treatment effects., Methods: Online databases including the George Mason Libraries, Global Health, Nursing and Allied Health, and PubMed were searched to identify decision regret studies with longitudinal components in patients with cancer., Results: A total of 845 unique citations were identified; 20 studies met inclusion criteria. Data was also collected on the time horizon for 90 studies; 47 % of studies evaluated regret at time points of one year or less, although this has increased significantly in prostate cancer citations since 2010. Regret was infrequent, affecting less than 20 % of patients, and often stable. Effect sizes in studies where decision regret changed over time were small to negligible., Conclusion: Longitudinal effects can influence the expression of decision regret, yet many studies are not designed to collect long-term data; prostate cancer studies may be particularly disadvantaged. The degree of this influence in current studies is small, though this outcome must be interpreted with caution., Practice Implications: Providers should be aware of the risk of late-emerging regret and counsel patients appropriately., Competing Interests: Declaration of Competing Interest None., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Objective: Patient participation represents a worldwide policy, but its impact lacks research. This study investigates impact of patient participation in health-service development by providing a comprehensive overview of how the literature describes it., Method: A scoping review with a broad search strategy was conducted. The literature was examined for study characteristics, purpose for, approaches to and impact of patient participation. The data were analyzed using a thematic analysis., Results: The 34 included primary studies reported impacts of patient participation that were interpreted to constitute two categories: 1. The participatory process´ impact on involved patient representatives and health professionals, and the organization´s patient participation practice itself. 2. The participatory service development´s impact on the design and delivery of services regarding patients and health professionals, and the organization., Conclusion: The literature describes a broad variation of impacts from health-service development, relevant for health professionals and patient representatives when initiating or participating in such processes. Our review provides an overview and discussion of these types of impact., Practice Implications: The findings can be of practical relevance to those aiming to develop services, quality indicators regarding effects of patient participation, or to further investigate aspects of participatory service development., Competing Interests: Declaration of Competing Interest There are no financial or other ties involved in the current work that may cause a conflict of interest., (Copyright © 2020 The Author(s). Published by Elsevier B.V. All rights reserved.)

Objective: To compare consumer and mental health professionals' (MHPs) preferences for decision-making in China and Europe., Methods: This study used cross-sectional design; Chinese data were collected by questionnaires and European data were obtained from the literature. Data were analysed using t-test, One-way ANOVA and Pearson correlation coefficient as appropriate., Results: This study involved 800 people diagnosed with severe mental illness and 506 MHPs. Chinese participants rated lower scores on preference for participation in decision-making (PD = 1.88) and information (IN = 2.70) than European participants (PD = 2.05, IN = 2.83). Chinese consumers rated a higher score on IN (2.78) but lower on for PD (1.75) than MHPs (IN = 2.64, PD = 1.97). Chinese consumers' education level is positively associated with preference for PD and IN. The gender, occupation and age of Chinese MHPs are associated with preference for PD., Conclusion: Both Chinese and Europeans had preference for shared involvement in mental health, while the preference in China is less. Opinions of consumers and MHPs might be different, regarding the level of patient involvement in specific decisions., Practice Implication: It is essential that consumers' preferences are understood for provision of optimal support for a shared decision-making approach., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Background and Aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy., Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise., Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible side-effects were explained using verbal labels., Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801)., Competing Interests: Declaration of competing interest All authors declare to have no conflict of interest., (Copyright © 2020 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Objective: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU., Data Sources: We conducted a literature search for articles published from 1976 through November 2019 using MeSH terminology in the following databases: MEDLINE, CINAHL Plus, EMBASE, PubMed, PsycINFO, Cochrane, Scopus, and Web of Science. All qualitative studies in which researchers explored parental participation and education in the NICU were included., Study Selection: A total of 29,937 articles were returned. Once we removed duplicates and limited results to qualitative studies, 48 articles remained. We excluded 41 articles because the studies reported were not conducted in NICUs, involved neonatal palliative care, or were review or opinion articles. We included seven articles for review., Data Extraction: Two authors reviewed all articles using the Critical Appraisal Skills Programme tool to assess study quality and independently scored each study. We reviewed and extracted authors, publication date, type of study, sample size, results, themes, and quotes and included these data elements in the analysis., Data Synthesis: We used a thematic synthesis technique to review the qualitative data, entered codes into NVivo software, and compared codes to create descriptive themes. From these descriptive themes, we generated four analytic themes: Learning to Parent a Hospitalized Infant, Stress and Anxiety, Health Care Providers as Gatekeepers, and NICU Environment., Conclusion: The four themes identified in this qualitative metasynthesis represent the factors that affect parents' abilities to participate in their infants' pain management. Further research is recommended to develop interventions that address these factors to optimize parents' participation in pain management for their infants during procedures in the NICU., (Copyright © 2020. Published by Elsevier Inc.)

Objective: Informed consent (IC) principles are often overlooked aspects in debates about national screening programs. This short communication examines the Danish approach to IC in decision-making about screening participation., Study Design: A descriptive approach is adopted in linking present screening practices with Danish regulation about IC and international ethical principles., Methods: To ascertain the extent to which screening procedures come up to IC requirements, the article adopts a review approach by examining relevant Danish national legislation including ministerial orders as well as international ethical codes., Results: The article finds that, although Danish legislation as well as international IC principles generally stipulates a decision-making process requiring oral communication, current procedures largely rely on one-way communication through written information available from leaflets, web sites, etc. Screening programs seem to have established no general formula to qualify healthcare users' understanding of data underlying their choice whether to be screened., Conclusion: The deviance from common IC principles may reduce healthcare quality, pose a safety problem, and challenge healthcare users' ability to exercise autonomy., (Copyright © 2020 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.)

The present study focuses on the identification of profiles of CAM believers and/or users. Using data from the Spanish CIS Barometer (2018) and a sample of 2486 Spaniards, a hierarchical and non-hierarchical cluster analysis and discriminant analysis have been performed. Profiles of people with a high level of belief in CAM and/or CAM users were identified. Results reflect relationships between personal factors (healthy lifestyle and status, political and religious ideology) and satisfaction with conventional medicine with the belief/use of CAM. Personal factors and satisfaction are not related to the level of belief in CAM. We have tried to fulfil some gaps detected in the literature: much of the research has been methodologically limited and there is a need to deepen the study of factors and processes that favor the initial uptake and subsequent use of CAM. Doing this, this paper offers diverse recommendations for organizations worried about this theme., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background: To reduce antimicrobial resistance (AMR), initiatives such as surveillance activities and activities to increase knowledge about how and why antibiotics (ABs) are (mis)used are needed. More surveillance systems are in place in the WHO Western European region than in the Eastern region, and only sparse knowledge exists about the current culture of AB use in the Eastern European countries., Objective: To investigate AB knowledge, attitudes and behaviors in countries in the WHO Eastern European region in order to identify overall similarities and differences across the region and how AB knowledge, attitudes and behavior patterns may be influenced by the national health care system., Methods: Semi-structured interviews were conducted in Armenia, Georgia, Kazakhstan, Moldova, Russia and Tajikistan with patients, doctors and pharmacists. In total, 80 interviews were carried out. A directed content analysis was applied, followed by a comparative analysis, identifying the similarities and differences in AB attitudes, knowledge and behaviors between the countries and discussing how the national health care systems might influence these patterns., Results: Cross-national patterns were identified regarding patients seeking ABs over-the-counter (OTC), patient variations in their requests for ABs when consulting doctors, and, finally, doctors and pharmacists appearing knowledgeable about ABs and their uses, with doctors displaying careful attitudes towards AMR. Indications of national differences between the countries included the ability of patients to afford ABs, prescribing practices of doctors and pharmacist attitudes towards selling ABs without prescriptions. Multiple aspects involved in patient and pharmacist AB decision making were detected, such as various rationales involved in buying/selling ABs OTC, implying that these processes are more complex than previously reported in the literature., Conclusions: Similarities across the Eastern European region could be seen in patient needs and uses of antibiotics obtained OTC at community pharmacies, whereas doctors appeared more influenced by specific structures of the national healthcare system., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objectives: Pediatrician-adolescent communication can improve adolescent health. We conducted a two-arm design to pilot-test an intervention that randomized adolescents to receive a Feedback Guide to promote engaged conversations. We hypothesized that adolescents who received the Guide would be more participatory., Methods: We recruited 12 pediatricians and 29 adolescents. Clinic staff enrolled adolescents using a tablet that enabled consenting, assessment of high-risk behaviors, and audio recording of encounters. We surveyed adolescents immediately and two months after the encounter., Results: Adolescents who received the intervention were more participatory than adolescents who did not. Pediatricians counseled on 20 of 32 high-risk behaviors with no significant arm differences. At follow-up, adolescents changed 9 of 32 behaviors; 6 were among 4 of adolescents in the intervention arm. Adolescents in the intervention arm were also more likely to report that counseling would help them change their behavior; these encounters were slightly longer than control arm encounters., Conclusions: We confirmed feasibility of a streamlined approach to enrolling and audio recording encounters. The Feedback Guide improved adolescent participation and might have helped them adopt healthier behaviors., Practice Implications: Adolescents can be primed to be participatory and can change their behaviors after a meaningful encounter with their pediatrician., Competing Interests: Declaration of Competing Interest The authors have no competing interests to declare., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Purpose: Adolescents living with long-term conditions (LTCs) often feel as though they are left out of discussions and decisions with healthcare professionals, which can give them the impression that their views are not important. Research around decision-making during clinical encounters often fails to represent adolescents' perspectives. This study explores adolescents' perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in shared decision-making (SDM)., Methods: Nineteen adolescents (aged 13-19 years) with LTCs were recruited from endocrinology, rheumatology, neurology, and nephrology clinics. Participatory qualitative interviews were conducted using life grids and pie charts, and transcripts were analyzed thematically., Results: Four overarching themes and nine sub-themes were identified which describe barriers and facilitators around SDM. Adolescents need to feel, as though their involvement is supported by parents and healthcare professionals, that their contribution to the decision-making process is important and will yield a positive outcome. Adolescents often feel it is their right to be involved in decisions that affect them but also feel as though the adults' contributions to the decisions are considered more valuable. Adolescents need to feel capable of being involved, in terms of being able to understand and process information about the available options and ask appropriate questions., Conclusions: This work highlights a number of ways SDM can be facilitated between healthcare practitioners and adolescents with LTCs. Identifying the needs of adolescents with LTCs is necessary for optimizing the SDM process and to support them during healthcare consultations., (Copyright © 2019 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: The objective of this study was to analyze adequacy of judgments about risk of bias (RoB) for blinding of participants and personnel (performance bias) in Cochrane systematic reviews of randomized controlled trials (RCTs)., Study Design and Setting: We extracted judgments and supporting comments for performance bias from Cochrane reviews' RoB tables using automated data scraping. We parsed all intervention descriptions, judgments about risk of performance bias, and comments supporting judgments into simple categories. We assessed adequacy of RoB judgments against recommendations from the Cochrane Handbook., Results: We analyzed judgments for performance bias of 10,429 RCTs included in 718 Cochrane reviews. Overall, 1,828 out of 6,918 judgments (26%) for performance bias were not in line with the Cochrane Handbook and were therefore considered inadequate. In reviews where Cochrane authors have split the performance bias domain into two subdomains, based on blinded individuals, we found lower prevalence of inadequate risk of bias judgments, with 9% of judgments for blinding of participants, and 5.8% judgments for the blinding of personnel subdomain being judged inadequately., Conclusion: In Cochrane reviews, risk of bias assessments for blinding of participants and personnel were frequently not in line with Cochrane Handbook recommendations. Interventions to improve these assessments should be taken into consideration., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: A systematic review (SR) was conducted to evaluate the comparative effectiveness of geriatrician-led models of care, and an integrated knowledge translation (iKT) approach facilitated SR relevance. Activities to engage knowledge users (KUs) in the SR were evaluated for perceived level of engagement., Study Design and Setting: KUs included patients, caregivers, geriatricians, and policymakers from three Canadian provinces. Activities included 1) modified Delphi to select outcomes; 2) cross-sectional survey to select outcome measures, and 3) in-person meeting to discuss SR findings. KU engagement was assessed using the Patient Engagement Evaluation Tool (PEET) after the second and third activities. KUs rated the extent of successful engagement using a 7-point Likert scale ranging from "no extent" to "very large extent.", Results: In total, 15 KUs completed the PEET: eight geriatricians, four policymakers, two patients, and one caregiver. Median engagement scores across all activities (median range: 6.00-6.50) indicated that KUs felt engaged. Differences were observed for activity type; perceived engagement at in-person meeting resulted in higher meta-criteria scores for trust (P = 0.005), legitimacy (P = 0.003), fairness (P = 0.013), and competency (P = 0.035) compared with online activities., Conclusions: KUs can be engaged meaningfully in SR processes. Their perceived engagement was higher for in-person than for online activities., (Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)