Information Needs and Information Sources of Patients Diagnosed with Rare Cancers

157 Pages·2017·1.88 MB·English

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Theses and Dissertations Graduate School
2016
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Dana L. Ladd
Virginia Commonwealth University
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Information Needs and Information Sources of Patients Diagnosed with Rare Cancers

A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of
Philosophy at Virginia Commonwealth University.

by

Dana L. Ladd,
Bachelor of Arts, College of William & Mary, 1994
Master of Science, University of Tennessee, 2000
Specialist Degree, University of South Carolina, 2007

Director: Robin K. Matsuyama, Ph.D.,
Associate Professor, Department of Health Behavior and Policy

Virginia Commonwealth University
Richmond, Virginia
November, 2016
Acknowledgement

The author wishes to thank several people for their support throughout this work. First, I would
like to express my appreciation and gratitude to my advisor Robin Matsuyama Ph.D. for her
guidance, mentorship, and support from the time I began the Social and Behavioral Science
doctoral program to completion.

I would also like to extend a sincere thank you to my advisory committee members. To Laurie
Lyckholm, MD thank you so much for your mentorship, friendship, and encouragement. Roy
Sabo Ph.D, John Quillin Ph.D, and Maria Thomson, Ph.D thank you for providing guidance
throughout the dissertation process.

Thank you to my husband Stephen Ladd for his patience over the past five years as I worked on
my doctoral degree. Thanks to my sister Loren Loving Marquez Ph.D and to my friends Carol
Smith and Alyssa Altshuler for their encouragement, suggestions, and editing assistance. Thank
you to my sweet sheltie boys Cody and Dillon who were constantly by my side as I wrote this
dissertation.

I’d like to dedicate this work in memory of my grandmother, Grace Healy Jackson who always
loved, encouraged, and believed in me.

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Table of Contents

List of Tables …………………………………………………………………………………….ix

List of Figures …………………………………………………………………………………....x

Abstract ………………………………………………………………………………………….xi

Chapter I: Introduction…………….………………………..........................................................13

Chapter II: Literature Review ………………………………….………………………………..16

Definition of Rare Cancer ……………………………………………………………….16

Rare Cancer Challenges …………………………………………………………………18

General Cancer Patients’ Information Needs and Information Sources ………………...21

Information Needs ………………………………………………………............21

Information Sources ……………………………………………………………..25

Information Satisfaction …………………………………………………………………28

Patient Satisfaction ………………………………………………………………31

Patient Trust in Physician ……………………………………………………….32

Health-Related Quality of Life ………………………………………………….33

Theoretical Framework ………………………………………………………………….35

Johnson’s Comprehensive Model of Information Seeking ……………………...35

Conceptual Model Describing Rare Cancer Patients’ Information Seeking ……37

Chapter III: Specific Aims and Research Questions…..…………………………………………40

Chapter IV: Research Design and Methods……………...............................................................42

Study Overview …………………………………………………………………………42

Study Site ………………………………………………………………………………..42
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List of Rare Cancers ……………………………………………………………………..42

Study Sample ……………………………………………………………………………43

Inclusion Criteria ………………………………………………………………..43

Exclusion Criteria ……………………………………………………………….44

Recruitment ……………………………………………………………………...44

Meeting Recruitment Goals ……………………………………………………..49

Sample Size and Power Analysis ………………………………………………………..49

Data Collection Procedures and Measurement ………………………………………….49

Variables and Measures …………………………………………………………………50

EORTC Quality of Life Questionnaire-Information Scale ……………………...50

The Health Information National Trends Survey ……………………………….53

Health-Related Quality of Life SF-12 …………………………………………...54

Analysis Plan ……………………………………………………………………………55

Chapter V: Results ……………………………………………………………………………....61

Survey Mailings …………………………………………………………………………61

Demographics …………………………………………………………………………...62

Information Needs ………………………………………………………………………63

Information about Disease ………………………………………………………64

Information about Medical Tests ………………………………………………..64

Information about Treatment ……………………………………………………64

Information about other Services ………………………………………………..65

Single Items ……………………………………………………………………..65

Added Items ……………………………………………………………………..65
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Information Received ……………………………………………………………………67

Information about Disease ……………………………………………………....67

Information about Medical Tests ………………………………………………..67

Information about Treatment ……………………………………………………68

Information about other Services ………………………………………………..68

Single Items ……………………………………………………………………..68
…
Added Items ……………………………………………………………………..68

Unmet Information Needs ……………………………………………………………….70

Information Subscales …………………………………………………………...70

Unmet Information Needs for Individual Items………………………………….70

Information Need Differences by Demographics………………………………………..71

Information Need Scale Differences by Gender ………………………………...71

Information Need Item Differences by Gender …………………………………72

Information Need Scale Differences by Race …………………………………...72

Information Need Scale Differences by Age ……………………………………73

Information Need Item Differences by Age …………………………………….73

Information Received Differences by Demographics …………………………………...74

Information Received Scale Differences by Gender ……………………………75

Information Received Scale Differences by Race ……………………………....75

Information Received Scale Differences by Age ………………………………..75

Information Received Item Differences by Age ………………………………...76

Information Sources ……………………………………………………………………..76

Sources Sought …………………………………………………………………..76
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Sources Preferred ………………………………………………………………..77

Information Satisfaction …………………………………………………………………78

Overall Information Satisfaction ………………………………………………...78

Information Satisfaction by Demographics ……………………………………..79

Perceived Helpfulness of Information …………………………………………..80

Searching Confidence …………………………………………………………...80

Amount of Effort to Find Information …………………………………………..81

Level of Frustration in Finding Information …………………………………….81

Difficulty Understanding Information Found …………………………………...81

Quality of Information …………………………………………………………..81
.
Source Trust ……………………………………………………………………..82

Health-Related Quality of Life ………………………………………………………….83

Information Satisfaction and Health-Related Quality of Life …………………………...84

Chapter VI: Discussion ...………………………………………………………………………..85

Information Needs and Information Received ………………………………………….85

Information Needs/Received by Demographics ………………………………...86

Unmet Information Needs ……………………………………………………………….90

Disease Information Items ………………………………………………………91

Treatment Information Items ……………………………………………………91

Financial, Insurance, Work-Related, and Legal Resources Information Items …92

Information Sources ……………………………………………………………………..93

Source Preference and Trust …………………………………………………….93

Issues with Patients Searching the Internet ……………………………………...95
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Information Satisfaction …………………………………………………………………96

Information Satisfaction by Demographics ……………………………………..99

Health-Related Quality of Life ………………………………………………………….99

Study Impact …………………………………………………………………………...100

Study Limitations ………………………………………………………………………102

Nomenclature …………………………………………………………………..102

Six-Month Embargo on Cancer Registry List …………………………………103

Generalizability of the Study …………………………………………………..103

Method Limitations …………………………………………………………….103

Survey Instruments …………………………………………………………….104

Mailed Survey Limitations …………………………………………………….105

Receiving Mail………………………………………………………………….106

Study Strengths ………………………………………………………………………...107

Fills a Needed Gap in the Literature …………………………………………...107

Ameliorates Gap in Knowledge ………………………………………………..107

Study Location …………………………………………………………………108

Validated Measures …………………………………………………………….108

Rare Cancer List ……………………………………………………………….108

Future Studies ………………………………………………………………………….108

Chapter VII: Conclusion...……………………………………………………………………...110

References ……………………………………………………………………………………...112

Appendices……………………………………………………………………………………...127

Appendix A – Survey Instrument ………………………………………………...……127
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Appendix B – Letters..……………………………………………………………….…144

Letter 1: Research Participant Introductory Letter……………………………..145

Letter 2: Research Participant Initial Invitation Letter…………………………146

Letter 3: Research Participant Reminder Letter………………………...............148

Letter 4: Research Participant Information Follow-up Letter…………..............149

Letter 5: Research Participant Final Letter… ………………………………….150

Appendix C - Cancer Types, Sites, and Stage by Demographics………………………151

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List of Tables

1. Timeline of Mailings following the Tailored Design Method…………………………..48

2. Letters and Surveys Sent and Received………………………………………………....62

3. Demographics……………………………………………………………………………63

4. Information Needs……………………………………………………………………….66

5. Information Received…………………………………………………………………….69

6. Sources Preferred and Used for Information…………………………………………….78

7. Overall Information Satisfaction…………………………………………………………79

8. Information Satisfaction by Demographics……………………………………………...79

9. Perceived Helpfulness of Information…………………………………………………...80

10. Searching Confidence……………………………………………………………………80

11. Search Effort, Frustration, Understanding, and Information Quality……………………82

12. Trust in Information Sources…………………………………………………………….83

13. Information Satisfaction and Health-Related Quality of Life…………………………..84

14. Cancer Histology Group and Behavior Descriptions of Study Participants by
Demographics………………………………………………………………………… 152

15. Histology group descriptions by gender and race………………………………………155

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