QOLP-12. ILLNESS UNDERSTANDING AND PERCEPTIONS ABOUT PROGNOSIS IN PATIENTS WITH MALIGNANT GLIOMAS AND THEIR CAREGIVERS

BACKGROUND Malignant gliomas (MG) are incurable tumors with limited survival. Prognostic awareness is essential for informed decision making, but patients’ and caregivers’ perceptions about their illness and prognosis are not well understood. METHODS We conducted a prospective, single-institution study in patients with newly diagnosed MG and their caregivers, following the outpatient visit in which their neuro-oncologist disclosed pathology results and discussed treatment options. Participants (patients and caregivers) completed the Prognosis and Treatment Perceptions Questionnaire to assess information preferences, treatment goals and prognostic understanding. RESULTS Of patients approached, 82% (14/17) were eligible and enrolled in the study. The majority of patients were male (9/14, 64%), median age 60 years (range 26-76) and had a glioblastoma (11/14, 79%). Most caregivers were female (8/11, 73%) and married to the patient (7/11, 64%). The majority of patients said their cancer was curable (10/13, 77%, one patient did not answer), while only 3/11 caregivers (27%) said the patient’s cancer was curable. Furthermore, 7/13 patients (54%) and 8/11 caregivers (73%) reported that their oncologist said their cancer was not curable, and the remainder (6/13 patients, 46% and 3/11 caregivers, 27%) said the oncologist “did not say” whether it was curable. Most patients (10/14, 71%) and caregivers (8/11, 73%) expressed a tendency to focus on the best-case scenario in response to information from their oncology team about their cancer. CONCLUSION Although most patients with MG and their caregivers acknowledged being told that their cancer was incurable, the majority of patients reported that their cancer was curable. Patients and caregivers often reported focusing on the best-case scenario regarding their cancer. Further investigation is warranted to explore strategies to support patients and caregivers learning about their incurable cancer.

Seamless Wayfinding by a Deafblind Adult on an Urban College Campus: A Case Study on Wayfinding Performance, Information Preferences, and Technology Requirements

This article reports on an empirical evaluation of the experience, performance, and perception of a deafblind adult participant in an experimental case study on pedestrian travel in an urban environment. The case study assessed the degree of seamlessness of the wayfinding experience pertaining to routes that traverse both indoor and outdoor spaces under different modalities of technology-aided pedestrian travel. Specifically, an adult deafblind pedestrian traveler completed three indoor/outdoor routes on an urban college campus using three supplemental wayfinding support tools: a mobile application, written directions, and a tactile map. A convergent parallel mixed-methods approach was used to synthesize insights from a pre-travel questionnaire, route travel video recordings, post-travel questionnaire, and post-travel interview. Our results indicate that wayfinding performance and confidence differed considerably between the three wayfinding support tools. The tactile map afforded the most successful wayfinding and highest confidence. Wayfinding performance and confidence were lowest for the mobile application modality. The simplicity of use of a wayfinding tool is paramount for reducing cognitive load during wayfinding. In addition, information that does not match individual, user-specific information preferences and needs inhibits wayfinding performance. Current practice pertaining to the representation of digital spatial data only marginally accounts for the complexity of pedestrian human wayfinding across the gamut of visual impairment, blindness, and deafblindness. Robust orientation and mobility training and skills remain key for negotiating unexpected or adverse wayfinding situations and scenarios, irrespective of the use of a wayfinding tool. A substantial engagement of the deafblind community in both research and development is critical for achieving universal and equitable usability of mobile wayfinding technology.

Using Goals of Care Conversations to Build Ethics Competency

"Literature indicates that 99% of clinicians believe that timely Goals of Care (GOC) conversations are important. However, only 11% of patients report having had GOC conversations with their providers throughout the trajectory of their disease. Congruent to this, it is reported that only 41% of patients feel that they have received care consistent with their preferences. One can therefore deduct that there is a great ethical gap in how patients are approached by healthcare providers, especially respecting their autonomous decision-making. As a concept, GOC refers to discussing patients’ therapy intend, which is informed by the patients’ hope, fears, information preferences, presumed minimally acceptable quality of life, and expectations for their future. Therefore it needs to be an explicit conversation which is personalized to each patient’s context and circumstances. Within these conceptual ideas there are a myriad of ethical values which needs to be addressed. The author will explain how a Goals of Care initiative was started at the hospital where the author is a clinical ethicist and how these interactions with various members of the care team have been used to build ethics competencies of all the members of the care team. This innovative approach has been applauded by the participants for making ethics practical and applicable. The structure of the talk will focus on basic literature review, discussion on initiative (how it was set up), challenges, lessons learnt, value in ethics competency development. "

Information preferences about treatment options in diffuse cutaneous systemic sclerosis: A Delphi consensus study

Objectives: The aim of this study was to identify and prioritize aspects essential for decision making in patients with diffuse cutaneous systemic sclerosis (dcSSc) and to gain insight into information preferences of treatment options which could guide development of a leaflet for patients. Methods: A three-round Delphi study was conducted with a panel of patients with dcSSc. The questionnaire was based on a systematic literature search regarding benefits and harms of four main treatment options in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide pulses and stem cell transplantation. Patients were asked to identify information that is essential for making a treatment decision. After the third round, a live, online discussion was held in order to reach consensus on these items and to discuss the content and design of the leaflet. Consensus was defined as ⩾75% agreement among panel members. Results: Of the 36 patients invited, 78% (n = 28) participated in one or more rounds, 67% (n = 24) completed the first, 69% (n = 25) the second and 75% (n = 27) the third round. In the last round, median age of participants was 51 years (interquartile range, 18) and median disease duration 4 years (interquartile range, 5); 52% were female. Patients had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%) or were treatment-naïve (7%). Eight patients joined the live panel discussion. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four harms (treatment-related mortality, infections, cardiac damage, increased risk of cancer) as essential information for decision making. Also a design of a leaflet was made. Conclusion: This study identified information about treatment options in dcSSc that should be addressed with patients. Our results can be used to develop effective patient information.

Patients perspectives on drug shortages in six European hospital settings – a cross sectional study

Background It is known that drug shortages represent a major challenge for all stakeholders involved in the process, but there is little evidence regarding insights into patients′ awareness and perspectives. This study aimed to investigate the patients-perceived drug shortages experience and their view on outcomes in different European hospital settings. Furthermore, we wanted to explore information preferences on drug shortages. Methods A retrospective, cross sectional, a mixed method study was conducted in six European hospital settings. One hospital (H) from each of this country agreed to participate: Bosnia and Herzegovina (H-BiH), Croatia (H-CR), Germany (H-GE), Greece (H-GR), Serbia (H-SE) and Poland (H-PO). Recruitment and data collection was conducted over 27 months from November 2017 until January 2020. Overall, we surveyed 607 patients which completed paper-based questionnaire. Questions related to: general information (demographic data), basic knowledge on drug shortages, drug shortages experienced during hospitalization and information preferences on drug shortage. Differences between hospital settings were analyzed using Chi-squared test or Fisher’s exact test. For more complex contingency tables, Monte Carlo simulations (N = 2000) were applied for Fisher’s test. Post-hoc hospital-wise analyses were performed using Fisher’s exact tests. False discovery rate was controlled using the Bonferroni method. Analyses were performed using R: a language and environment for statistical computing (v 3.6.3). Results 6 % of patients reported experiences with drug shortages while hospitalized which led to a deterioration of their health. The majority of affected patients were hospitalized at hematology and/or oncology wards in H-BiH, H-PO and H-GE. H-BiH had the highest number of affected patients (18.1 %, N = 19/105, p < 0.001) while the fewest patients were in H-SE (1 %, N = 1/100, p = 0.001). In addition, 82.5 %, (N = 501/607) of respondents wanted to be informed of alternative treatment options if there was a drug shortage without a generic substitute available. Majority of these patients (66.4 %, N = 386/501) prefer to be informed by a healthcare professional. Conclusions Although drug shortages led to serious medical consequences, our findings show that most of the patients did not perceive shortages as a problem. One possible interpretation is that good hospital management practices by healthcare professionals helped to mitigate the perceived impact of shortages. Our study highlights the importance of a good communication especially between patients and healthcare professionals in whom our patients have the greatest trust.

Information Matching: How Regulatory Focus Affects Information Preference and Information Choice

Individuals often prefer information that matches their needs. In this study, we aimed to explore the relationship between regulatory focus and information preference. Specifically, we investigated the effects of promotion-focused information and prevention-focused information on explicit and implicit information preferences and choice behavior, and examined the mediating roles of information preference. In Experiment 1, we found that prevention-focused individuals were more likely to choose functional information, whereas promotion-focused people were more likely to choose hedonic information. However, there was no significant relationship between regulatory focus and explicit preference and no mediating effect of explicit information preference. In Experiment 2, we found that promotion-focused individuals had a greater implicit preference for hedonic information than did prevention-focused individuals. Implicit information preference mediated the influence of regulatory focus on information choice. The findings of this study may help us understand the psychological mechanism underlying information preference and have important implications for information dissemination.

Prognostic Understanding in Advanced Cancer Patients

This chapter provides an overview of prognostic understanding in patients with advanced cancer. It reviews how the construct has been defined and measured historically, including current research on the multidimensional nature of prognostic understanding. It further highlights the importance of prognostic understanding for patients and their loved ones. Specifically, this chapter reviews the relationship between prognostic understanding and psychosocial outcomes, as well as the role of prognostic understanding in patient health information preferences, patient-provider communication, and healthcare decision-making at the end of life. It provides information on current communication practices and recent interventions to improve disclosure of prognostic information. Lastly, cultural variations in health information preferences and prognostic understanding are discussed, along with future directions for research and clinical practice.