Patient Preferences For Communication Research Articles

Barriers to Serious Illness Conversations Among Patients with Advanced Cancer: A Qualitative Study

Serious illness conversations (SICs) are discussions between clinicians and cancer patients about illness understanding, information preferences, and goals of care. Interventions to prompt SICs increase SIC rates and improve care delivery near the end of life. This embedded sub-study examined SIC barriers and facilitators among "refractory" patients without an SIC despite enrollment in an SIC clinical trial. We recruited advanced cancer patients with no documented SIC 60 days after randomization in a clinical trial of patient- and clinician-nudges to engage in SICs. We conducted semi-structured interviews with patients and their caregivers if present and brief email surveys with patients' oncologists. We used qualitative content analysis to identify themes related to SIC barriers and facilitators and to identify strategies to improve SICs. Of 44 participants, 19 were patients, 10 were caregivers, and 15 were oncologists. Themes of SIC barriers and facilitators included (1) how patients coped with their illness, which shaped their readiness for SICs; (2) clinician communication style, which shaped ease of having an SIC; (3) prognostic uncertainty and disease stability, which could prompt or justify delaying an SIC; and (4) family members' presence, which could instigate an SIC. Regarding ways to improve SIC nudges, patients and caregivers had mixed perspectives but often highlighted a preference for interventions with personal touches. Patient readiness remains an important barrier even after targeted SIC interventions. Future SIC interventions should consider approaches tailored to patient communication preferences and interventions involving personal interactions.

"They forget that I'm a human being"-ward round communication with older patients living with frailty and informal caregivers: a qualitative study.

Skilful communication prompts quality patient care. Informal caregivers occupy a crucial role when caring for hospitalised older patients living with frailty. However, skilful communication with both patients and informal caregivers during ward rounds has not been studied. Thus, we aimed to explore communication preferences of patients and informal caregivers during ward rounds. We conducted semi-structured interviews with hospitalized patients and informal caregivers until information redundancy occurred. We used inductive coding of the transcribed interviews followed by a reflexive thematic analysis. The study included 15 patients and 15 informal caregivers. Patients had a median age of 85years (range 75-100years) and seven patients were females. Informal caregivers' median age were 45years (range 38-80years) and 13 were females. Three themes were generated: (1) building relationships and conveying information, (2) alleviating informal caregiver strain and (3) sharing the decision-making process. Themes highlighted the importance of collaborative and empathetic approaches in healthcare interactions, emphasizing interpersonal communication skills, such as fostering professional relationships. The interviews unveiled informal caregiver burden stemming from disempowerment during hospital discharge process and managing mistrust within the healthcare system. The shared decision-making process should address patients' and informal caregivers' needs and circumstances. Communication preferences of a population of older patients living with frailty and informal caregivers during ward rounds encompass interpersonal communication, demonstrating ample time, and being seen as a human being. Informal caregivers value being included in the decision-making process. Skilful communication includes for doctors to recognize informal caregivers' narratives and burdens.

Let Us Have the Conversation: Serious Illness Communication in Oncology: Definitions, Barriers, and Successful Approaches.

Serious illness communications are crucial elements of care delivery for patients with cancer. High-quality serious illness communications are composed of open, honest discussions between patients, caregivers, and clinicians regarding patient's communication preferences, expected illness trajectory, prognosis, and risks and benefits of any recommended care. High-quality communication ideally starts at the time of a patients' cancer diagnosis, allows space for and response to patient emotions, elicits patients' values and care preferences, and is iterative and longitudinal. When integrated into cancer care, such communication can result in improved patient experiences with their care, care that matches patients' goals, and reduced care intensity at the end of life. Despite national recommendations for routine integration of these communication into cancer care, a minority of patients with cancer receive such communication. In this chapter, we describe elements of high-quality serious illness communication, patient-, clinician-, institution-, and payer-level barriers, and successful strategies that can routinely integrate such communication into cancer care delivery.

Who says what to whom through what channel? Formative communication research on antibiotic resistance messaging for urgent care patients.

To explore the source, message, channel, and receiver effects on patient concern for antibiotic resistance, willingness to reduce antibiotic use, and expectations for an antibiotic prescription in a prepandemic sample. We used data reported from a national cross-sectional survey of adults who had visited an urgent care center within the last year. Data were collected from April 4 to April 9, 2017. The survey included an embedded experimental design to test changing effects before versus after message exposure. A national sample of adult participants (n = 610) who had used urgent care at least once in the past year were recruited through GfK's KnowledgePanelTM. KnowledgePanel survey response rates are typically about 65%. Respondents ranged in age from 18 to 85 and were more likely to be female (377/610; 62%), White (408/610; 67%), and covered by private insurance (414/610; 68%). Outcome variables were measured on 4-point scales 1-4 scale, and t-tests were conducted for measures that were collected pre and postmessaging. The majority of participants trusted their doctor and desired them as the source for information regarding antibiotic resistance, followed by field experts (eg, CDC). Direct messaging (eg, email) and targeted advertisements were least preferred. This study provides foundational data on patient communication preferences in terms of source, message content, and channel when receiving information on antibiotics and antibiotic resistance, as well as how these factors affect patient concern, willingness, and expectations. Follow-up work is needed to replicate these findings in a postpandemic sample.

COMMUNICATION PREFERENCES OF PATIENTS WITH LIMITED ENGLISH PROFICIENCY IN THE OTOLARYNGOLOGY CLINIC SETTING

In the United States, people with limited English proficiency (LEP) and lower health literacy have reduced access to care and poorer health outcomes. There is a lack of data on how to best provide language assistance services in the ambulatory setting. This study will evaluate what type of professional language interpretation services are preferred by LEP patients in the otolaryngology clinic population. Our study aims are 1) to assess the communication preferences of patients with LEP in the healthcare setting regarding interpreter services, 2) to determine if there are specific LEP patient demographics that correlate with communication preferences in the healthcare setting regarding interpreter services, and 3) to determine if there is a correlation between health literacy and degree of language barrier, and if there is, to what degree, and how may this affect the patient’s preferences and experience. LEP adult patients and adult caregivers of pediatric patients treated at 5 of Loyola University Medical Center Otolaryngology clinic sites will be consented and given a one-time study questionnaire to complete in their native language. The questionnaire will ask about the patient’s background, place of birth, primary place of birth, primary language, years living in the United States, self-reported English language proficiency and fluency, self-reported health status, and preferences for the type of language support services. Health literacy will be assessed with the Brief Health Literacy Screen. Targeted interventions can potentially be designed and incorporated in the healthcare setting based on the data and identified communication preferences and the demographic correlations. This in turn has the potential to reduce healthcare disparities and improve outcomes for LEP patients.

Deaf patients' preferred communication in clinical settings: implications for healthcare providers.

Deaf patients who communicate in American Sign Language (ASL) experience communication challenges leading to medical errors, treatment delays, and health disparities. Research on Deaf patient communication preferences is sparse. Researchers conducted focus groups based on the Health Belief Model with culturally Deaf patients and interpreters. The ASL focus groups were interpreted and transcribed into written English, verified by a third-party interpreting agency, and uploaded into NVivo. Deductive coding was used to identify communication methods and inductive coding was used to identify themes within each. Writing back-and-forth introduced challenges related to English proficiency, medical terminology, poor penmanship, and tendencies of providers to abbreviate. Participants had various speechreading abilities and described challenges with mask mandates. Multiple issues were identified with family and friends as proxy interpreters, including a lack of training, confidentiality issues, emotional support, and patient autonomy. Video remote interpreter challenges included technical, environmental, and interpreter qualification concerns. Participants overwhelmingly preferred on-site interpreters for communication clarity. While there was a preference for direct care, many acknowledged this is not always feasible due to lack of providers fluent in ASL. Access to on-site interpreters is vital for many Deaf patients to provide full access to critical medical information. Budgetallocation for on-call interpreters is important in emergency settings.

Patient Communication Preferences for Prostate Cancer Screening Discussions: A Scoping Review.

Prostate cancer screening guidelines have changed as new evidence showing an equivocal mortality benefit led many organizations to relax recommendations for this screening and instead suggest shared decision making. Presently, it is unknown how successfully these conversations happen. Our objective was to understand men's communication preferences when they discuss prostate cancer screening. In this scoping review, we searched 4 electronic databases (Medline, Embase, PsycINFO, and CINAHL) and the gray literature. Additional studies were obtained from reference lists of included studies and relevant review articles. We included qualitative studies reporting patient perspectives relevant to the research question and published in English. Two independent researchers screened titles and abstracts based on these criteria, conducted a full-text review for final inclusion, evaluated the remaining articles for validity, extracted data, and used thematic analysis to build a thematic framework. A subgroup analysis was performed for Black men as many studies elicited their perspectives. Analyses were based on 29 studies. We identified 4 main themes that men described as critical for successful prostate cancer screening risk discussions with their primary care clinician: using everyday language, receiving a sufficient quantity of information, spending enough time, and having a trusting and respectful relationship. Three additional themes emerged that prohibited men from having any discussions at all: having already decided to pursue prostate cancer screening, being passive in medical encounters, and perceiving threat to one's well-being. Black men faced racism, which impacted medical interactions. Our findings point to strategies to support men's communication preferences and address preconceptions surrounding prostate cancer screening. More studies are needed in certain underrepresented populations given the propensity for disparity in health outcomes.

Building Social Support: Disclosure and Communication Processes Between IVF Patients and Peers in Canada

Infertility, and the choice to attempt assisted reproductive technology, is the source of significant stress for patients pursuing in vitro fertilization (IVF), and this compels many to identify and leverage psychosocial supports. Because the quality of social support individuals receive depends on the nature of the communication they share with the receiver, it is important to consider how disclosure builds social support. We explored the IVF patient and peer communication process and the disclosure of fertility-related and non-fertility-related information by conducting 23 interviews with first-time and recurring IVF patients. Results show that IVF patients share natural, immediate, and backward disclosure transitions; share a mutual understanding of engagement boundaries; have a propensity for reciprocal sharing; and prefer digital communication for their interactions. While participants reported disclosing a wide range of aspects of their condition and its treatment, such as treatment protocol, diagnosis/IVF attempts, medication and injections, financial questions, marital adjustment, family and social acceptance, emotional adjustment, and treatment milestones, they also reported a tendency to distance themselves during the post–embryo transfer waiting period and avoided sharing other aspects of their lives. Future support strategies should frame patient–peer support as a pragmatic channel that can adapt depending on disclosure and communication preferences of patients.

Impact of Locus of Control on Patient–Provider Communication: A Systematic Review

Growing evidence shows there is heterogeneity in patient communication preferences and a need to tailor communication approaches accordingly. However, little is known about the psychosocial factors that influence communication preferences. Among them is locus of control (LOC), a belief about who or what determines outcomes, including health. Although LOC theory was developed over 60 years ago as a personality theory, its relevance in healthcare has increased over the past two decades. There is a paucity of empirical evidence on patient or provider LOC as it influences communication quality and outcomes in healthcare settings. We conducted a systematic review to collate the current state of the literature. We carried out a comprehensive search of PubMed MEDLINE, Embase, PsycInfo, and Cochrane Library databases to retrieve relevant peer-reviewed articles. A total of 1152 publications were identified. Our final review included 17 articles that underwent data extraction and quality assessment. The included studies found evidence of LOC associations with several patient and provider communication-related outcomes including satisfaction with care; medical decision-making and communication preferences; adherence; and patient-provider rapport. As opposed to generalized approaches to communication, assessing patient LOC may allow clinicians to tailor their approaches to match patients’ LOC. Our findings provide a starting point and highlight the need for future studies.

Impact of Patient Communication Preferences on the Patient Trust in Physicians: A Cross-Sectional Study in Iranian Outpatient's Clinics.

There are widely emerging concerns that patient confidence in physicians is diminishing as physician–patient communication is threatened globally. This study aimed to assess patient communication preferences and their impact on patient trust in physicians. A cross-sectional study was conducted among outpatient clinics of 2 public and private hospitals in Tabriz, Iran. A total of 704 patients were selected conveniently. Of the 704 patients, 6.39% had low trust, 36.79% moderate trust, 35.37% had a high trust, and 21.45% had blind trust in physicians. Overall patient communication preference score was more in a private clinic rather than a public one (P = .008). Patients of private hospitals and those who were living in rural areas have been shown to have more trust in physicians. Patients’ trust in physicians showed a significant association with patient communication preference (B = 0.58; 95% CI: 0.53-0.63, P < .001).

Patient-centered care and the electronic health record: exploring functionality and gaps.

Healthcare systems have adopted electronic health records (EHRs) to support clinical care. Providing patient-centered care (PCC) is a goal of many healthcare systems. In this study, we sought to explore how existing EHR systems support PCC; defined as understanding the patient as a whole person, building relational connections between the clinician and patient, and supporting patients in health self-management. We assessed availability of EHR functions consistent with providing PCC including patient goals and preferences, integrated care plans, and contextual and patient-generated data. We surveyed and then interviewed technical representatives and expert clinical users of 6 leading EHR systems. Questions focused on the availability of specific data and functions related to PCC (for technical representatives) and the clinical usefulness of PCC functions (for clinicians) in their EHR. Technical representatives (n = 6) reported that patient communication preferences, personalized indications for medications, and end of life preferences were functions implemented across 6 systems. Clinician users (n = 10) reported moderate usefulness of PCC functions (medians of 2-4 on a 5-pointy -35t scale), suggesting the potential for improvement across systems. Interviews revealed that clinicians do not have a shared conception of PCC. In many cases, data needed to deliver PCC was available in the EHR only in unstructured form. Data systems and functionality to support PCC are under development in these EHRs. There are current gaps in PCC functionality in EHRs and opportunities to support the practice of PCC through EHR redesign.

Effective provider-patient communication of a rare disease diagnosis: A qualitative study of people diagnosed with schwannomatosis

ObjectiveTo understand diagnostic communication preferences of patients with schwannomatosis, a rare disease. MethodsEighteen adults with schwannomatosis from across the United States participated in semi-structured phone interviews about their diagnostic experiences. Interview transcripts were inductively coded using thematic analysis. ResultsWe identified three elements of effective diagnostic communication: education (particularly about etiology, prognosis, and treatment options); psychological support (to cope with the new diagnosis and any prior diagnostic harms); and efforts to develop therapeutic alliance (i.e. feelings of collaboration, trust, and social-emotional rapport). Poor communication was characterized by inadequate or jargon-heavy explanations, perceived disinterest in or disbelief of symptoms, and lack of partnership. Effective communication helped people feel informed and cope with their condition; poor communication could cause significant psychological distress. ConclusionsDuring diagnosis, patients need education and psychosocial support; the presence of therapeutic alliance between clinicians and patients facilitates this assistance. Diagnostic communication that includes these elements helps patients proactively engage in healthcare decision-making and connect with appropriate treatments. Practice ImplicationsWhen disclosing a rare disease diagnosis, clinicians should meaningfully educate patients about the disorder and acknowledge diagnosis-related psychosocial stressors. Approaching diagnosis empathetically and collaboratively helps foster therapeutic alliance. Referrals for psychological and genetic counseling are often warranted.

Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.

Background:Precision medicine seeks to better tailor medical care to the needs of individual patients, but there are challenges involved in communicating to patients, health care providers, and health system leaders about this novel and complex approach to research and clinical care. These challenges may be exacerbated for Alaska Native and American Indian (ANAI) people, whose experiences of unethical research practices have left some ANAI communities hesitant to engage in research that involves extensive data-sharing and diminished control over the terms of data management and who may have distinct, culturally-informed communication needs and preferences. There is need for communication research to support Tribal health organizations and ANAI people as they consider implementation of and participation in precision medicine. To address that need, this study characterizes the informational needs and communication preferences of patients, providers, and leaders at an Alaska Native Tribal health organization.Methods:We conducted 46 individual, semi-structured interviews to explore perspectives on precision medicine and related communication needs among patients, providers, and leaders of a Tribal health organization. Analysis involved team-based coding to identify a priori and emergent themes, followed by identification and recoding of content relevant to precision medicine informational needs and communication preferences.Results:Patients, providers, and leaders were described as both sources and recipients of information about precision medicine. Information deemed essential for making decisions about whether to participate in or implement a precision medicine program included information about the clinical and research applications of precision medicine, benefits and risks, health system costs and impacts, and data management practices. Preferred communication channels included digital and non-digital informational materials, as well as in-person learning opportunities for individuals and groups. Participants also describe contextual factors and barriers that influenced the acceptability and effectiveness of approaches to health communication.Conclusion:Results can inform approaches to communicating information about precision medicine to stakeholders within Tribal and other health care systems considering implementation of precision medicine in clinical or research contexts.

Patient-Clinician Communication Issues in Palliative Care for Patients With Advanced Cancer.

The delivery of palliative care to patients with advanced cancer and their families, whether done by oncology clinicians or palliative care clinicians, requires patient-centered communication. Excellent communication can introduce patients and families to palliative care in a nonthreatening way, build patient trust, enable symptom control, strengthen coping, and guide decision making. This review covers deficiencies in the current state of communication, patient preferences for communication about palliative care topics, best practices for communication, and the roles of education and system intervention. Communication is a two-way, relational process that is influenced by context, culture, words, and gestures, and it is one of the most important ways that clinicians influence the quality of medical care that patients and their families receive.

Family caregivers’ perspectives on communication with cancer care providers

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers’ perspectives on communication with oncology care providers.Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N = 63).Participants: Participants were family caregivers of adult patients with cancer. Most were patients’ spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment.Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers’ experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers.Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals’ experiences beyond their prescribed roles of “cancer patient” and “caregiver.”Implications for Psychosocial Oncology Practice: Psychosocial oncology providers’ strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers’ potentially different communication preferences.

Seeking Information from the VA During Natural Disasters

The purpose of this study is to identify factors influencing patient preferences for communication from the US Department of Veterans Affairs (VA) during natural disasters. The 37-question, probability-based survey collected data from 2,264 VA users living in the Northeast US logistic regression analyses were conducted for top four modalities, and age was identified as the most important predictor of communication preferences. The findings suggest that the use of multiple modalities, such as telephone, television, radio, text, and email is necessary to successfully disseminate information and effectively reach all VA patients in the event of large-scale emergencies.

Principles and operational model for governing Diabetes Action Canada's data repository for patient-oriented research

Introduction Diabetes Action Canada is developing a data repository and registry of potential research participants to support research, QI, and service to improve diabetes care. Central to the repository are pseudonymised linkable electronic medical records (EMRs) from family practices that are participating in the Canadian Primary Care Sentinel Surveillance Network (CPCSSN).&#x0D; Objectives and Approach We sought to develop an information governance process that would engender the trust of patients and the health care professionals (HCPs) that their EMR data were being managed responsibly in the best interests of patients living with diabetes. Following an extensive literature review, we developed a principles-based governance framework and operational model, with a strong focus on patient participation in the governance process. We recruited patients through our pre-existing patient advisory circles and physicians through our partners in CPCSSN. In January 2018, we held a training workshop for Research Governing Committee (RGC) members.&#x0D; Results We identified eight values-based principles to guide our governance process: transparency; accountability; following the rule of law; integrity of purpose, science and ethics; participation and inclusiveness; impartiality and independence; effectiveness; efficiency and responsiveness; and reflexivity and continuous quality improvement of process. Patients represent 50% of RGC members and HCPs 20%. Patient members provide their perspectives on: goals and outcomes of the research; the benefits and burdens among people living with diabetes; and the communication preferences of patients around recruitment. HCPs provide a deep understanding of the settings and systems in which care is provided to ensure contextual integrity of the research. Two researchers and one person with bioethics expertise provide technical and ethics perspectives on data requests.&#x0D; Conclusion/Implications Governance must go beyond legal compliance to ensure a ’social licence’ for the use of the data. In part, we address this through our guiding principles, our emphasis on patient and healthcare provider perspectives, and focus on research that is scientifically sound, ethically robust and in the public interest.

Improving patient-centered communication of the borderline personality disorder diagnosis

Background: Borderline personality disorder (BPD) has historically been difficult to diagnose, and laden with stigma, leading to a variety of clinical responses to patients who present with symptoms.Aims: (1) To understand how clinicians communicate the diagnosis of BPD with patients. (2) To compare these practices with patient communication preferences. (3) To use patient preferences to evaluate clinician practices.Methods: Semi-structured interviews with mental health care providers and experts (n = 32) were compared with patients (n = 10) and primary patient-written accounts (n = 22). Grounded theory was used to explore causal pathways between clinical practice and patient responses.Results: The majority of clinicians sampled did not actively share the BPD diagnosis with their patients, even when they felt it was the most appropriate diagnosis. The majority of patients wanted to be told that they had the disorder, as well as have their providers discuss the stigma they would face. Patients who later discovered that their diagnosis had been withheld consistently left treatment.Conclusions: Clinicians believed that by not using the BPD label they were acknowledging or sidestepping the stigma of the condition. However, from the perspective of patients, open communication was essential for maintaining a therapeutic relationship.

Preferences of advanced cancer patients for communication on anticancer treatment cessation and the transition to palliative care.

The objective of this study was to clarify the communication preferences of patients with advanced cancer regarding discussions about ending anticancer treatment and transitioning to palliative care and to explore the variables associated with those preferences. Participants were 106 Japanese patients with cancer who had been informed at least 1 week earlier about the cessation of their anticancer treatment. They completed a survey measuring their preferences for communication about ending anticancer treatment and transitioning to palliative care as well as their demographic characteristics. Medical records were also examined to investigate medical characteristics. Results of the descriptive analysis indicated that patients strongly preferred their physicians to listen to their distress and concerns (96%), to assure them that their painful symptoms would be controlled (97.1%), and to explain the status of their illness and the physical symptoms that would likely occur in the future (95.1%). Multiple regression analyses identified the factors associated with these preferences: telling patients to prepare mentally and informing them of their expected life expectancy were associated with cancer site; sustaining hope was associated with cancer site and children; and empathic paternalism was associated with duration since cancer diagnosis. The majority of patients preferred their physicians to be realistic about their likely future and wanted to be reassured that their painful symptoms would be controlled. For patients with cancer at certain sites, those with children, and those more recently diagnosed, physicians should communicate carefully and actively by providing information on life expectancy and mental preparation, sustaining hope, and behaving with empathic paternalism.

Oncology Communication Skills Training: Bringing Science to the Art of Delivering Bad News

Review of "Effect of communication skills training program for oncologists based on patient preferences for communication when receiving bad news: A randomized controlled trial" by Fujimori et al. (2014), Journal of Clinical Oncology, 32, 2166-2172. For a further discussion of survey research, please see the related article by Julie Ponto starting on page 168.