Evaluation of a Novel Hospice-Specific Patient Decision Aid.

Background: We tested a novel hospice-specific patient decision aid to determine whether the decision aid could improve hospice knowledge, opinions of hospice, and decision self-efficacy in making decisions about hospice. Methods: Two patient-level randomized studies were conducted using two different cohorts. Recruitment was completed from March 2019 through May 2020. Cohort #1 was recruited from an academic hospital and a safety-net hospital and Cohort #2 was recruited from community members. Participants were randomized to review a hospice-specific patient decision aid. The primary outcomes were change in hospice knowledge, hospice beliefs and attitudes, and decision self-efficacy Wilcoxon signed rank tests were used to evaluate differences on the primary outcomes between baseline and 1-month. Participants: Participants were at least 65 years of age. A total of 266 participants enrolled (131 in Cohort #1 and 135 in Cohort #2). Participants were randomized to the intervention group (n = 156) or control group (n = 109). The sample was 74% (n = 197) female, 58% (n = 156) African American and mean age was 74.9. Results: Improvements in hospice knowledge between baseline and 1-month were observed in both the intervention and the control groups with no differences between groups (.43 vs .275 points, P = .823). There were no observed differences between groups on Hospice Beliefs and Attitudes scale (3.29 vs 3.08, P = .076). In contrast, Decision Self-Efficacy improved in both groups and the effect of the intervention was significant (8.04 vs 2.90, P = -.027). Conclusions: The intervention demonstrated significant improvements in decision self-efficacy but not in hospice knowledge or hospice beliefs and attitudes.

Assessing and Understanding Reactance, Self-Exemption, Disbelief, Source Derogation and Information Conflict in Reaction to Overdiagnosis in Mammography Screening: Scale Development and Preliminary Validation.

PURPOSE: Overdiagnosis is a concept central to making informed breast cancer screening decisions, and yet some people may react to overdiagnosis with doubt and skepticism. The present research assessed 4 related reactions to overdiagnosis: reactance, self-exemption, disbelief, and source derogation (REDS). The degree to which the concept of overdiagnosis conflicts with participants' prior beliefs and health messages (information conflict) was also assessed as a potential antecedent of REDS. We developed a scale to assess these reactions, evaluated how those reactions are related, and identified their potential implications for screening decision making. METHODS: Female participants aged 39 to 49 years read information about overdiagnosis in mammography screening and completed survey questions assessing their reactions to that information. We used a multidimensional theoretical framework to assess dimensionality and overall domain-specific internal consistency of the REDS and Information Conflict questions. Exploratory and confirmatory factor analyses were performed using data randomly split into a training set and test set. Correlations between REDS, screening intentions, and other outcomes were evaluated. RESULTS: Five-hundred twenty-five participants completed an online survey. Exploratory and confirmatory factor analyses identified that Reactance, Self Exemption, Disbelief, Source Derogation, and Information Conflict represent unique constructs. A reduced 20-item scale was created by selecting 4 items per construct, which showed good model fit. Reactance, Disbelief, and Source Derogation were associated with lower intent to use information about overdiagnosis in decision making and the belief that informing people about overdiagnosis is unimportant. CONCLUSIONS: REDS and Information Conflict are distinct but correlated constructs that are common reactions to overdiagnosis. Some of these reactions may have negative implications for making informed screening decisions. HIGHLIGHTS: Overdiagnosis is a concept central to making informed breast cancer screening decisions, and yet when provided information about overdiagnosis, some people are skeptical.This research developed a measure that assessed different ways in which people might express skepticism about overdiagnosis (reactance, self-exemption, disbelief, source derogation) and also the perception that overdiagnosis conflicts with prior knowledge and health messages (information conflict).These different reactions are distinct but correlated and are common reactions when people learn about overdiagnosis.Reactance, disbelief, and source derogation are associated with lower intent to use information about overdiagnosis in decision making as well as the belief that informing people about overdiagnosis is unimportant.

How Do Patients Describe Hospice Care? A Qualitative Analysis of the Language Used by Older Adults to Describe Hospice Care.

Background: Misconceptions about hospice are prevalent and create barriers to hospice enrollment. These misconceptions may be a result of the confusing language around hospice care. Objective: To conduct a content analysis exploring the language used and accuracy in which older adults describe hospice. Design: Participants in two prior studies were asked to describe hospice in their own words. Responses were coded inductively to explore the language used, and deductively to evaluate accuracy in describing hospice. Subjects: Two hundred sixty-six adults, aged at least 65 years or older. Results: The most common language used to describe hospice care related to "comfort," "care," and "family." Most participants accurately describe hospice eligibility, services, and goals of care but inaccurately described location of hospices services. Conclusions: Participants accurately described most of the logistical aspects of hospice care and words such as comfort, care, and family are commonly used to describe services suggesting preferred language for communication interventions. Clinicaltrials.gov (Cohort #1 NCT03794700 and Cohort #2 NCT04458090).

Patient Roadmaps for Chronic Illness: Introducing a New Approach for Fostering Patient-Centered Care.

Background. Too frequently, patients with chronic illnesses are surprised by disease-related changes and are unprepared to make decisions based on their values. Many patients are not activated and do not see a role for themselves in decision making, which is a key barrier to shared decision making and patient-centered care. Patient decision aids can educate and activate patients at the time of key decisions, and yet, for patients diagnosed with chronic illness, it would be advantageous to activate patients in advance of critical decisions. In this article, we describe and formalize the concept of the Patient Roadmap, a novel approach for promoting patient-centered care that aims to activate patients earlier in the care trajectory and provide them with anticipatory guidance. Methods. We first identify the gap that the Patient Roadmap fills, and describe theory underlying its approach. Then we describe what information a Patient Roadmap might include. Examples are provided, as well as a review comparing the Patient Roadmap concept to existing tools that aim to promote patient-centered care (e.g., patient decision aids). Results and Conclusions. New approaches for promoting patient-centered care are needed. This article provides an introduction and overview of the Patient Roadmap concept for promoting patient-centered care in the context of chronic illness.

Who is susceptible to online health misinformation? A test of four psychosocial hypotheses.

Objective: Health misinformation on social media threatens public health. One question that could lend insight into how and through whom misinformation spreads is whether certain people are susceptible to many types of health misinformation, regardless of the health topic at hand. This study provided an initial answer to this question and also tested four hypotheses concerning the psychosocial attributes of people who are susceptible to health misinformation: (1) deficits in knowledge or skill, (2) preexisting attitudes, (3) trust in health care and/or science, and (4) cognitive miserliness. Method: Participants in a national U.S. survey (N = 923) rated the perceived accuracy and influence of true and false social media posts about statin medications, cancer treatment, and the Human Papilloma Virus (HPV) vaccine and then responded to individual difference and demographic questions. Results: Perceived accuracy of health misinformation was strongly correlated across statins, cancer, and the HPV vaccine (rs ≥ .70), indicating that individuals who are susceptible to misinformation about one of these topics are very likely to believe misinformation about the other topics as well. Misinformation susceptibility across all three topics was most strongly predicted by lower educational attainment and health literacy, distrust in the health care system, and positive attitudes toward alternative medicine. Conclusions: A person who is susceptible to online misinformation about one health topic may be susceptible to many types of health misinformation. Individuals who were more susceptible to health misinformation had less education and health literacy, less health care trust, and more positive attitudes toward alternative medicine. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Development of a Decision Aid for Patients and Families Considering Hospice.

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).

Content Analysis of Negative Online Reviews of Hospice Agencies in the United States.

Importance: As online reviews of health care become increasingly integral to patient decision-making, understanding their content can help health care practices identify and address patient concerns. Objective: To identify the most frequently cited complaints in negative (ie, 1-star) online reviews of hospice agencies across the United States. Design, Setting, and Participants: This qualitative study conducted a thematic analysis of online reviews of US hospice agencies posted between August 2011 and July 2019. The sample was selected from a Hospice Analytics database. For each state, 1 for-profit (n = 50) and 1 nonprofit (n = 50) hospice agency were randomly selected from the category of extra-large hospice agencies (ie, serving >200 patients/d) in the database. Data analysis was conducted from January 2019 to April 2019. Main Outcomes and Measures: Reviews were analyzed to identify the most prevalent concerns expressed by reviewers. Results: Of 100 hospice agencies in the study sample, 67 (67.0%) had 1-star reviews; 33 (49.3%) were for-profit facilities and 34 (50.7%) were nonprofit facilities. Of 137 unique reviews, 68 (49.6%) were for for-profit facilities and 69 (50.4%) were for nonprofit facilities. A total of 5 themes emerged during the coding and analytic process, as follows: discordant expectations, suboptimal communication, quality of care, misperceptions about the role of hospice, and the meaning of a good death. The first 3 themes were categorized as actionable criticisms, which are variables hospice organizations could change. The remaining 2 themes were categorized as unactionable criticisms, which are factors that would require larger systematic changes to address. For both for-profit and nonprofit hospice agencies, quality of care was the most frequently commented-on theme (117 of 212 comments [55.2%]). For-profit hospice agencies received more communication-related comments overall (34 of 130 [26.2%] vs 9 of 82 [11.0%]), while nonprofit hospice agencies received more comments about the role of hospice (23 of 33 [69.7%] vs 19 of 31 [61.3%]) and the quality of death (16 [48.5%] vs 12 [38.7%]). Conclusions and Relevance: Regarding actionable criticisms, hospice agencies could examine their current practices, given that reviewers described these issues as negatively affecting the already difficult experience of losing a loved one. The findings indicated that patients and their families, friends, and caregivers require in-depth instruction and guidance on what they can expect from hospice staff, hospice services, and the dying process. Several criticisms identified in this study may be mitigated through operationalized, explicit conversations about these topics during hospice enrollment.

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions.

BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care. METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

End-of-Life Care Planning: The Importance of Older Adults' Marital Status and Gender.

Background: As the U.S. population ages, dramatic shifts are occurring in the proportion of older adults who are divorced and widowed. Health status and behaviors are known to differ across marital status groups, yet research on end-of-life (EOL) care planning has only compared married and unmarried persons, overlooking differences between divorced and widowed individuals, by gender. Objective: This study aimed to examine marital status differences in EOL care planning by comparing the likelihood of discussions about EOL care, designation of medical durable power of attorney (MDPOA) for health care decisions, and completion of a living will for married, divorced, and widowed older adults, by gender. Methods: Analyses used data from the U.S. Health and Retirement Study for 2243 adults (50 years of age and older), who died during the course of the study. Post-death, proxy respondents reported on the decedents' EOL care discussions, living will completion, and establishment of an MDPOA. Multivariate regressions were estimated to test differences in care planning across marital status groups, for men and women. Results: Divorced men were less likely than married men to have had care discussions and to have engaged in any of the three planning behaviors. Widowers were more likely to have established an MDPOA. Both divorced and widowed women were more likely to have performed any of these EOL planning activities than married women. Conclusions: Divorced men and married women are at risk for lacking EOL care planning. Practitioners are encouraged to discuss the importance of such planning as they encounter these at-risk groups.

Implementation and Evaluation of a Novel Colorectal Cancer Decision Aid Using a Centralized Delivery Strategy.

BACKGROUND: Colorectal cancer (CRC) is the second leading cause of cancer-related deaths in the United States; however, CRC screening reduces both incidence and mortality rates. Patient decision aids (DAs) are an evidence-based strategy to support patients making health-related decisions. CRC screening DAs can be unsuccessful due to provider preferences for colonoscopy and lack of effective DA implementation strategies within clinical settings. METHODS: A hybrid implementation-effectiveness study was conducted testing the feasibility of using an existing centralized preventive health screening outreach infrastructure to implement a novel CRC DA across a health care system. Participants included primary care patients at one of three study clinics. Implementation was assessed by determining whether patients remembered receiving the DA and were aware of CRC screening options. Effectiveness was measured by comparing overall screening rates between the control and intervention groups. RESULTS: Using a centralized delivery system was a feasible and efficient method for implementing DAs to a large academic health system. More than 90% of the intervention group remembered receiving the DA, and 80% found it helpful in their decision-making process. The DA was successful in improving CRC screening knowledge; however, overall CRC screening rates significantly decreased between the control and intervention periods (50.8% vs. 39.2%, respectively; p = 0.03). CONCLUSION: Centralized delivery is a feasible method for DA implementation. Although DAs increase knowledge, the true effectiveness of CRC DAs in clinical settings is unknown, as a result of the number in screening tests, diversity in DA format, and the variability in dissemination and implementation practices.

Hospice, She Yelped: Examining the Quantity and Quality of Decision Support Available to Patient and Families Considering Hospice.

CONTEXT: Whether to engage hospice is one of the most difficult medical decisions patients and families make. Meanwhile, misperceptions about hospice persist. Within this context, the breadth and depth of patient decision support materials for hospice are unknown. OBJECTIVES: The objective of this study was to identify available patient decision aids (PtDAs) relating information about hospice care and compare that information with the informational needs expressed by real-world health care consumers. METHODS: First, the research team conducted an environmental scan of available PtDAs that included hospice as a treatment option and met six basic criteria defined by the International Patient Decision Aid Standards. Second, laypersons conducted an organic Web search for information regarding hospice, followed by a semi-structured interview eliciting perceptions of the available information. The setting was the University of Colorado Health Care System. Participants included 20 laypersons aged 18 years or older. RESULTS: The environmental scan identified 7PtDAs that included hospice. No PtDAs were designed primarily around hospice; rather, hospice was referenced under the umbrella of another treatment option. The layperson search identified information distinct from the scan; no participant accessed any of the above 7PtDAs. Many participants found the available online material confusing and biased, while failing to provide clear information on cost and lacking desired patient and caregiver testimonials. CONCLUSION: We found no formal PtDA designed primarily to help patients/families contemplating hospice. Furthermore, accessible online information about hospice does not appear to meet patient and caregiver decisional needs. These findings support the development and dissemination of high-quality decision support materials for hospice.