EFFECTS OF COMMUNICATION COMPLEXITY ON ANALOGUE CLIENTS IN A VIDEO CANCER GENETIC COUNSELING SESSION By Emily Susan Bonkowski A thesis submitted to the Johns Hopkins University Bloomberg School of Public Health in conformity of the requirements for the degree of Master of Science Baltimore, MD March 2018 ABSTRACT Objective: Communication of information plays a central role in genetic counseling.There have been few direct comparisons of differing communication approaches. This research study aimed to experimentally manipulate communication of genetic information and to describe how the complexity of counselor communication impacts client affective and cognitive outcomes using a hypothetical cancer genetic counseling scenario. Methods: The study used a mixed methods experimental design consisting of a web-based module that simulated specific educational and communication aspects of a cancer genetic counseling session. Female study participants (N=286) were randomly assigned to watch one of three simulated video genetic counselor sessions of either high, medium, or low communication complexity consisting of 8-21 minute of short video clips.
Demographic information, personal perceived cancer risk, genetic literacy, and patient-provider orientation were collected before beginning the videos, and survey instruments were administered after the videos to capture decisional, affective, and cognitive outcomes. Results: Low complexity communication of information reduced feelings of negative emotion (including confusion) compared to the high complexity group. Individuals in the medium complexity group felt more decisional conflict than the high complexity group. No other main effects on measured genetic counseling outcomes were detected.
Genetic literacy and patient- provider orientation had modifying effects on the relationship between complexity level and some outcomes. Personal characteristics, including age, race, perceived personal risk of cancer, genetic literacy, and patient-provider orientation were associated with some genetic counseling outcomes. Participants generally found the experience to be realistic. Conclusions: Low complexity communication did not elicit poorer outcomes than high complexity communication overall.
Our findings also support the notion that personal factors influence clients’ reactions to genetic counseling communication. In accordance with principles of patient-centered communication, it is important to tailor communication to fit clients’ needs. ii TABLE OF CONTENTS Abstract………………………………………………………….ii List of Tables……………………………………………………………………….iv List of Figures……………………………………………………………………….vi Introduction………………………………………………………………………………1 Background…………………………………………………………………….1 Communication Models and Barriers to Effective Communication in………….2 Genetics Genetic Counseling Communication……………………….……………………4 Genetic Counseling for Hereditary Cancer Syndromes………………………….6 Genetic Counseling Outcomes………………………………………………….7 Client Personal Characteristics………………………………………………….8 Hypothetical Study Design with Analogue Clients……………….10 Specific Aims and Hypotheses……………………………………………………….………18 Study Design Overview……………………………….………18 Description of Study Participant Populations……………………………….21 The Study Instrument……………………………….21 Sample Size and Power Calculation……………………………….………………………37 Recruitment and Study Completion Rates……….………………………………37 Participant Personal Characteristics……………………………………………39 Bivariate Analysis…….51 Aim 1: Communication Complexity Level and Genetic Counseling Outcomes….52 Aim 2: Personal Characteristics and Multivariate Models of Outcomes……….113 Communication Complexity and Genetic Counseling Outcomes…………….113 Relevance of Personal Characteristics……………………………………….130 Appendix A: Recruitment Emails…………………………………………………….132 Appendix B: Online Informed Consent Form…………………………………………134 Appendix C: Survey Instrument……………………………………………………….137 Appendix D: Video Scripts (High, Medium, and Low Complexity)………………….162 Appendix E: Bivariate Analyses………………….…………189 iii LIST OF TABLES Table 1. Video Dialogue Script Complexity Measures………………………………….
Length of Video Clips……………………………………………. Study Independent and Dependent Variables…………………………. Summary of Incomplete Surveys………………………………………………41 Table 5. Perceived Personal Cancer Risk Scores Summary…………………………….
Genetic Literacy Scores (GLAC). Patient-Provider Orientation (PPOS) Scores Summary…………. Summary of Decisional Outcomes. Regression Model for Decisional Conflict……………………………….
Summary of Emotional Response……. Regression Model for Positive Emotional……………………………. Regression Model for Ease of Mind……. Regression Model for Confidence…….
Regression Model for Negative Emotional Response……. Regression Model for Fear………. Regression Model for Confusion………. Regression Model for Frustration……….
Regression Model for Feeling Different from Others………. Cancer Genetic Knowledge Scores Summary…. Cancer Genetics Knowledge Measure Summary by Question…. Regression Model for Cancer Genetics Knowledge…….
Perceived Respect and GC Satisfaction………. Regression Model for GC Satisfaction………. Regression Model for Perceived Respect from Genetic Counselor…. Verisimilitude Score and Count Summaries……….
Regression Model for Ease of Playing Role of the Client………. Regression Model for Perceived Reality of Video Genetic Counselor. Regression Model for Similarity to Other Healthcare………. Self-Reported Engagement Scores and Count Summary……….
Regression Model for Engagement……. Test Statistics for Test Decision Differences. Multinomial Logistic Regression Models……. Stratified Regression Models for Genetic Literacy and Satisfaction.
Summary of Genetic Literacy and Interaction Term Effects on Satisfaction. Stratified Regression Models for Genetic Literacy and Respect……. Summary of Genetic Literacy and Interaction Term Effects on Respect. Summary of Patient-Provider Orientation and Complexity Interaction.
Stratified Regression Models for PPOS and Knowledge. Correlations between Independent Variables……. Pearson’s Pairwise Correlations of Personal Characteristics by Outcomes. High Complexity Correlations of Personal Characteristics by Outcomes.
Medium Complexity Correlations of Personal Characteristics by Outcomes186 Table 45. Low Complexity Correlations of Personal Characteristics by Outcomes.187 iv LIST OF FIGURES Figure 1. Study Design Flow…………………. Frequency Distribution of Perceived Personal Risk of Cancer……….
Frequency Distribution of Genetic Literacy (GLAC) Scores……. Frequency Distribution of Patient-Provider Orientation (PPOS). Frequencies of Genetic Test Decision. Frequency Distribution of Decisional Conflict.
Boxplot of Decisional Conflict by Complexity Level. Box Plot of Positive and Negative Emotional Responses. Frequency Distribution of Positive and Negative Emotional.…62 Response Scores Figure 11. Box Plots of Negative and Confusion Emotional Responses.
Box Plots of Cancer Genetics Knowledge Scores……. Frequency Distribution of Cancer Genetics Knowledge Scores…. Frequency Distribution of GC Respect and Satisfaction……. Frequency Distributions of Measures of Verisimilitude…….
Frequency Distributions of Measures of Self-Reported Engagement. Best Fit Linear Regression Model of Genetic Literacy and Satisfaction. Best Fit Linear Regression Model of Genetic Literacy and Respect………110 Figure 19. Best Fit Linear Regression Models of Patient-Provider Orientation and.…112 Knowledge v ACKNOWLEDGEMENTS Dr.
Lori Erby: Thank you for your thoughtful and patient encouragement throughout this arduous process, from beginning to end (and beyond). Your optimism and investment in this project has kept me going these last few years, and your compassion and personal career and research trajectory has served as a model for something I personally aspire to. My committee members Dr. Debra Roter, Dr.
Kala Visvanathan and Dana Petry: Thank you all for your personal contributions. My project benefited from the input I received from your expertise in communication and health literacy, cancer care, and genetic counseling. Barbara Biesecker: Thank you for planting the seed for this project by challenging me to think critically and to pursue a strong evidence base for what we do in genetic counseling in theory, in research, and in practice. Julie Sapp: Thank you for graciously and expertly acting as the genetic counselor in the genetic counseling videos.
NHGRI and NIH Staff: Thank you Ingrid Frey for connecting me with the CRVP research participants and helping me find ways to increase enrollment. Thank you to the members of the NHGRI staff who lent their video recording expertise and helpful statistics guidance. vi My participants: Thank you all for your willingness to contribute your time and thoughtful insights to my research project. My family and Stefan: Thank you for supporting me wherever I go and whatever I do.
You have all taught me to be a lifelong learner, have been a constant source of strength in my personal and professional growth. Thank you for encouraging me from beginning through the very end. My classmates Hannah, Rachel, Anna, and Annie: Thank you all for being some of the smartest, kindest, silliest, and most supportive people I know. I have learned so much from each of you, and our shared experience will have lasting effects on the rest of my life.
vii INTRODUCTION Background In the genetic counseling setting, patients are counseled about the biomedical and psychosocial implications of genetic conditions. Though “education about inheritance, testing, management, prevention, resources and research” is included in the National Society of Genetic Counselor’s professional definition of genetic counseling, the effects of communication of information on patients have not been well studied (Resta et al. Additionally, what goes on in a genetic counseling session has been described as “a black box,” and much of genetic counseling practice remains largely unknown, though research using audio and video recordings of genetic counseling sessions has shed light on the typical content of routine genetic counseling sessions (Biesecker and Peters, 2001; Roter et al. These studies have suggested that genetic counselors talk more than their clients, and the majority of genetic counseling sessions focus on teaching and biomedical information (Meiser et al., 2008; Roter et al.
In genetic counseling, complex information is communicated regarding inheritance, genetics, testing technologies, test results, treatment, screening, medical management, and psychosocial implications of a risk of a disease. Genetic counseling is not only information laden, but information may be provided in a way that is too complex for some clients to understand (Roter et al. Clearly, communication of information is critical to genetic counseling; Hsia goes as far as to suggest that, compared to other medical contexts, “information giving [is] the treatment itself” in genetic health care (Hsia, 1979). Given this, it is important to better understand how communication of information is affecting patients.
-1- Despite communication of information accounting for the majority of time spent in genetic counseling sessions, not much is known about how the way information is communicated impacts how patients feel and think or how it impacts their decisions. Specifically, there have been no tightly controlled experiments designed to examine the effects of providing genetic counseling-related information by altering communication complexity. This study has aimed to experimentally examine participants’ responses across varying levels of communication complexity in a hypothetical simulated cancer genetic counseling setting. The purpose of the study was to better understand how communication of information affects genetic counseling patients’ affective and cognitive outcomes, to examine how personal characteristics interact with communication complexity to affect affective and cognitive outcomes, and to gather exploratory data about the personal experience of receiving complex information in genetic counseling.
Communication Models and Barriers to Effective Communication in Genetics Communication of information from provider (i., genetic counselor) to patient is the central interest of our study. One model of communication of information is the information-giving model of care, which proposes that the communication of the information is the provider's job, and the decision-making task is the patient’s responsibility (Redsell and Buck, 2009). Redsell and Buck emphasize that the “information giving model. assumes that information is understood by everyone in the same manner,” and that it is based on “a view that people make conscious, rational choices about health behaviors and that factual information alone will influence choices,” -2- (Redsell and Buck, 2009).
However, not much is known about how much information is needed in order to be “complete” or what specific pieces of knowledge are crucial for any given person’s decisions. Moreover, patient informational needs and information-seeking behaviors differ between individuals (Schmidlen et al., 2014; Waters et al. In contrast to the information giving model, the patient-centered care model focuses on the personal informational and psychological needs of the individual patient. Patient-centered information provision focuses on making information accessible to patients and includes elements of information chunking, interactivity, plain language and lower oral literacy demand, and empathic statements (Windover et al., 2014; Street et al., 2009; Doak et al., 1996; Roter et al.
Genetics information is complex and often new to patients. Optimal learning necessitates attention to how information is presented and how clients engage with the information. Accessibility of information is another component of patient-centered care, and patients with lower health and genetic literacy will have a more difficult time accessing information than those with higher literacy levels. Additionally, genetics jargon can be a barrier for patients to comprehend the utility of what they are learning.
For instance, patients may confuse a biologically functional protein and dietary protein and their relationship to genetics and health (Bernhardt, 2016). One study by Lerman and colleagues found that 49.5% of their cohort of cancer patients left the session feeling confused and feeling that they had difficulty understanding the information (Lerman et al. To elucidate approaches to remedying problems with accessibility, patient educational research has shown that information is more accessible when presented in chunks and when engagement with the information is encouraged (Windover et al., 2014; Doak et al. The patient- -3- centered care and communication model allows for flexibility in tailoring information- giving to each particular patient to meet his or her learning needs.
