1 2 3 4 5 PM R XXX (2015) 1-8 www.pmrjournal.org 6 7 8 9 10 11 12 13 14 15 16 17 Q3 18 19 20 21 22 23 24 25 26 Abstract 27 28 29 Background: Access to health information is crucial to persons living with a spinal cord injury or disorder (SCI/D). Although 30 previous research has provided insights on computer and Internet use among persons with SCI/D, as well as how and where persons 31 with SCI/D gather health information, few studies have focused on U.S. veterans with SCI/D. 32 Objective: To characterize health information seeking among veterans with SCI/D and to examine the association between 33 34 technology use and the characteristics of veterans with SCI/D. 35 Design: Cross-sectional. 36 Setting: Veterans Health Administration (VHA). 37 38 Participants: Sample of 290 veterans with SCI/D who utilize services at 2 VHA SCI/D Centers. 39 Methods: Postal mail survey. 40 Main Outcome Measurements: Extent of computer, Internet, and text messaging use, information source use, and e-Health 41 literacy rates. 42 43 Results: The survey response rate was 38%. The majority of respondents were male (97.2%), younger than 65 years (71.0%), and 44 white (71.7%). Of the respondents, 64.8% indicated that they use a computer, 62.9% reported use of the Internet, and 26.2% 45 reported use of text messaging. The mean overall e-Health Literacy Scale score was 27.3 (standard deviation ¼ 7.2). Similar to 46 47 findings reported in studies focused outside the veteran population, the most frequent source that veterans turned to for 48 information about SCI/D was a health professional (85.1%); this was also the most frequent source that veterans indicated they 49 would turn to first to get information about SCI/D (75.9%). Other frequently reported sources of information included other 50 51 persons with SCI/D (41.0%), Internet resources (31.0%), and family and friends (27.9%). 52 Conclusions: Fairly high levels of computer and Internet use exist among veterans with SCI/D. Veterans with SCI/D also have a 53 strong preference for peopledparticularly health professionals, and to a lesser extent peers and family and friendsdas sources of 54 information about SCI/D. These findings highlight the importance of combining technology and human interaction to meet the 55 56 information needs of this population. 57 58 59 60 61 62 A spinal cord injury or disorder (SCI/D) represents a Introduction 63 lifelong condition that requires active, ongoing care. 64 65 Self-management activities, including bladder and In the United States, an estimated 276,000 persons 66 bowel care, controlling weight, and monitoring skin are living with spinal cord injuries (SCIs) [1]. The 67 integrity, are critical to prevent or reduce complications Veterans Health Administration (VHA), which is the 68 69 [3]. Disease management models [4] posit information largest single network of SCI care in the United States, 70 as a necessary component of developing informed, provides veterans with medical treatment and voca71 72 activated patients, and as a patient’s health and living tional, psychological, and social services, as well as 73 situation evolve, so does his or her information needs. other resources, through a coordinated system of 74 75 Understanding access to and use of health information facilities across the country [2]. In 2013 alone, the VHA 76 among persons with SCI/D is crucial to facilitate the provided care to more than 29,000 veterans with SCI. 77 78 79 1934-1482/$ - see front matter ª 2015 by the American Academy of Physical Medicine and Rehabilitation 80 http://dx.doi.org/10.1016/j.pmrj.2015.06.443
Original Research
Health Information Seeking and Technology Use Among Veterans With Spinal Cord Injuries and Disorders
Timothy P. Hogan, PhD, Jennifer N. Hill, MA, Sara Locatelli, PhD, Frances M. Weaver, PhD, Florian P. Thomas, MD, MA, PhD, Kim M. Nazi, FACHE, PhD, Barry Goldstein, MD, PhD, Bridget M. Smith, PhD
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Health Information Seeking in Veterans With SCI/D
transition from initial inpatient rehabilitation after SCI/D and subsequently to support ongoing, effective self-management in the community. Although previous studies of health information seeking may have included small numbers of U.S. veterans, they primarily have been focused outside the veteran population. The prevalence of chronic and co-occurring health conditions is high in the overall veteran population [5], and veterans may face other challenges that can interfere with efforts to manage their health. For instance, in studies comparing the veteran population with nonveterans, veterans were less likely to have a college education (30%) than the general population (41%), were more likely to earn less than $20,000 annually (49% versus 25%), and were 3.5 times as likely to self-report poor health than the general population [6]. In the case of veterans with SCI/D, comprehensive health care services are available through VHA’s SCI System of Care [2], which may have implications for access to and use of technology and health information resources. For these reasons, examining health information seeking among veterans can help identify general patterns that are applicable across both the veteran and nonveteran populations with SCI/D and also highlight important issues that may be unique among veterans. Previous studies focused outside the veteran population have shown that persons with SCI/D want information about various topics related to their condition [7-10]; however, it is not uncommon for such information needs to go unmet, especially after discharge from acute care facilities [8] or as secondary conditions develop. Earlier research has also shown that persons with SCI/D use a range of sources to gather healthrelated information. In a survey of communitydwelling persons with SCI/D living in Ontario, Canada, Burkell et al [11] found that respondents reported using multiple information sources, with a median of 4 sources per respondent. At present, the use of simple technology platforms to disseminate important health information to patients, including text messaging through mobile devices, is also receiving considerable attention; however, few studies have examined the prevalence of text messaging among persons with SCI/D. Internet access among persons with SCI/D is important not only as a means to gather health information, but also to enable use of e-Health tools such as online support groups, patient-provider electronic messaging systems, and other systems that support online transactions with health care organizations. Earlier work focused outside the veteran population has revealed that the Internet is a fairly accessible resource for many persons with SCI/D and has considerable potential for delivering health information and related resources [7,9,11-13]. Some of these studies also found that persons with SCI/D generally rank the Internet higher than other written sources of health information [7,9]. A variety of factors that influence use of the Internet
among persons with SCI/D have also been identified, including access to a computer, functional limitations such as impaired hand movement, and sociodemographic characteristics, particularly race, age, and educational attainment [9,13-15]. As described later, in addition to being able to use a computer and access the Internet, understanding what health-related resources are available online and how to use them to help one’s own situation may also be influential factors. Effectively imparting health information to persons with SCI/D is an integral aspect of spinal cord medicine that requires a thorough understanding of patient health information seeking and technology use. Although previous research has provided insights regarding computer and Internet use among persons with SCI/D, as well as how and where persons with SCI/D gather health information, few of these studies have focused on U.S. veterans with SCI/D. As such, the objectives of this study were to (1) characterize health information seeking among veterans with SCI/D and (2) examine the association between technology use and the characteristics of veterans with SCI/D. Methods Identification of Survey Recipients The data reported in this article were collected as part of a larger study funded by the Health Services Research and Development Service of the U.S. Department of Veterans Affairs and focused on the adoption of a Webbased personal health record portal among veterans with SCI/D. A mailed survey was administered in an effort to better understand information source preferences and use of technology in this population. Survey recipients were identified through 2 VHA SCI/D Centers, both located in the Midwestern United States. The study was approved by the appropriate VHA Institutional Review Boards. To be eligible to participate, veterans had to be at least 18 years of age; have an SCI/D; and have utilized health care services within the past 12 months at 1 of the 2 participating SCI/D Centers. Veterans who met these sampling criteria were identified through administrative datasets. Because they have unique issues related to the progression of their disease, veterans with multiple sclerosis were excluded from the sample. Instrument Design Question items were developed to ascertain the extent and patterns of computer and Internet use among survey respondents, their preferences for sources of SCI/D-related information, and topics that they would like to learn more about to manage life with SCI/D. Additionally, the 8-item e-Health Literacy Scale (eHEALS) developed by Norman and Skinner [16] was included to assess perceived knowledge, comfort, and
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skills for finding, evaluating, and applying health information resources from the Internet. Each eHEALS question item is measured on a 5-point Likert scale ranging from strongly disagree (1) to strongly agree (5). To compute a total eHEALS score, all question items are summed to range from a minimum score of 8 to a maximum of 40, with higher scores indicating higher self-perceived e-health literacy [17]. Before the survey was administered, feedback on question items was sought from clinical and educational leadership within the VHA SCI/D System of Care. To ensure appropriate readability and length, the resulting survey instrument was pilot tested with a small group of VHA employees and veterans (n ¼ 9), some of whom had an SCI. This feedback was used to revise question item wording, response options, and survey layout. Data Collection A survey instrument along with a cover letter explaining the nature of the study and a corresponding stamped and addressed return envelope were mailed via the U.S. postal service to persons who met the sampling criteria. Ballpoint pens bearing a VHA logo were included as a small incentive. The cover letter also included instructions and a toll-free telephone number that survey recipients could call if they had any questions. Response Rate A total of 495 persons met the sampling criteria from the first participating SCI/D Center, and 297 persons met the sampling criteria from the second SCI/D Center. Of the 792 surveys that were mailed, 26 were returned by the post office because of incorrect address information or because the intended recipient was deceased at the time the mailing was received. A total of 290 surveys were completed and returned, yielding a 38% response rate.
3
Diseases, ninth revision (ICD-9) codes in medical records, obtained from medical SAS datasets as necessary. Analyses All analyses were performed in Stata version 12.0 (StataCorp, College Station, TX). We characterized use of computers, text messaging, the Internet, and sources of information with use of frequencies. To examine the unadjusted associations between veteran characteristics and outcomes, we used t-tests for continuous variables and c2 tests for categorical variables. Multiple logistic regression models were used to examine associations between veteran characteristics and computer, Internet, and text messaging use. For the eHEALS score, we used a multiple linear regression. Because of item nonresponse, the number of reported respondents differs across survey questions. Results Description of Sample The majority of respondents were male (97.2%), younger than 65 years (71.0%), white (71.7%), and married (58.6%). The mean age of the sample was 59.6 years (standard deviation [SD] ¼ 12.2). Approximately half (51.4%) of the respondents had paraplegia, and 53.9% had a duration of injury of less than 10 years. The demographic characteristics of the respondents are reported in Table 1. We compared survey respondents with nonrespondents in an effort to examine potential bias in response rates. One person was excluded from this comparison because of missing demographic data (n ¼ 791). Although a higher percentage of respondents were white compared with those who did not respond (71.7 versus 64.7, P ¼ .042), no significant differences were found between the groups for gender, age category, having more than one comorbidity, level of injury, duration category, or marital status.
Participant Characteristics Computer Use Demographic characteristics of patients including age, race, ethnicity, and marital status were obtained from the VHA Medical Statistical Analysis System (SAS) Inpatient and Outpatient datasets. The number of comorbid conditions was determined from diagnoses in VHA databases based on the Charlson Comorbidity Index [18] during the 12-month period prior to the index date. Injury characteristics of veterans including level (tetraplegia or paraplegia) and duration of injury (0-9 or 10þ years) were obtained from the VHA Spinal Cord Dysfunction Registry. SCI/D etiology was classified as traumatic (eg, vehicular, fall, act of violence, sports injury, or another traumatic cause) or nontraumatic (eg, degenerative disease of the spine, tumor, infection or abscess, or another disease). Missing Spinal Cord Dysfunction Registry information was supplemented with International Classification of
Of the 290 respondents, 188 (64.8%) indicated that they use a computer. Although the finding was not significant, 67.8% of veterans with paraplegia reported computer use compared with 61.9% of veterans with tetraplegia or missing level of injury. The majority of computer users most often accessed their computer at home (84.0%). Other locations of access included work (6.9%), at the VHA (4.3%), and at a family/friend’s home or other location (4.8%). Most veterans who indicated that they use a computer use it daily (71.4%), whereas 13.4% use it about 2-3 times per week, 5.9% use it once a week, 5.4% use it 2-3 times a month, and 4.3% use it less than once a month. Among computer users, 67.5% indicated that they do not use assistive equipment when they use a computer. For those who do use assistive
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Health Information Seeking in Veterans With SCI/D
Table 1 Demographic characteristics Characteristic Gender Male Female Age group, y <65 65 Race/ethnicity White Black Hispanic/other Marital status Married Not married Duration of injury, y <10 10 Duration of injury unknown Level of injury Tetraplegia Paraplegia Level of injury unknown More than one comorbidity Yes No Self-reported health status Excellent Good Fair Poor
Respondents (%) (n ¼ 290) 282 (97.2) 8 (2.8) 206 (71.0) 84 (29.0) 208 (71.7) 57 (19.7) 25 (8.6) 170 (58.6) 120 (41.4) 152 (53.9) 130 (46.1) 8 (2.8) 139 (47.9) 149 (51.4) 2 (0.7) 176 (60.7) 114 (39.3) 22 119 121 25
(7.7) (41.5) (42.2) (8.7)
equipment, a roller/trackball mouse was the most frequently reported assistive equipment used (53.7%); in addition, 10.1% used voice recognition and 7.4% indicated use of other assistive equipment. Although use of a roller/trackball mouse was comparable among veterans with paraplegia and veterans with tetraplegia, use of voice recognition was reported primarily by veterans with tetraplegia (19.8% versus 2.0%, P < .001). Almost one quarter of users had assistance from a family member when using the computer (24.5%), whereas 11.2% had help from a friend, 10.1% from a paid assistant, and 2.7% from a person who was not a family member, friend, or paid assistant. When the associations between veteran characteristics and computer use were examined using unadjusted comparisons, veterans who were white indicated significantly more computer use than other veterans (70.7% versus 50.0%, P < .001). Veterans who indicated that they had excellent or good health, compared with fair or poor health, reported more use of computers (75.9% versus 54.4%, P < .001), and although only 45.5% of veterans who were older than 65 years indicated that they use computers, 72.3% of younger veterans identified as computer users (P < .001). When we estimated the association between patient characteristics and computer use adjusting for self-reported health status, race/ethnicity, marital status, level of injury, duration
of injury, and age, veterans with good or excellent health status had higher odds of computer use (odds ratio [OR] ¼ 2.4; 95% confidence interval [CI] ¼ 1.4-4.2, P < .01) than did veterans with poor or fair health. Veterans who were white also had higher odds of computer use than other veterans (OR ¼ 2.0; 95% CI ¼ 1.1-3.7, P < .01), whereas veterans older than 65 years had lower odds of use compared with younger veterans (OR ¼ 0.3; 95% CI ¼ 0.2-0.5, P < .001). Marital status, level of injury, having more than one comorbidity, and duration of injury were not associated with computer use in either the unadjusted or adjusted analyses. Internet Use When asked if they ever use the Internet, 62.9% of the 280 veterans who responded to this question item indicated that they had used the Internet. Table 2 includes a summary of the frequency of Internet use for different reasons. Overall, the most commonly reported reason was e-mail; 92.5% of respondents indicated some use of e-mail, whereas 85.1% indicated using the Internet to obtain news and 82.6% used it to obtain health information. The percentage of veterans who were white and reported Internet use was significantly higher than the percentage of other veterans (68.3% versus 48.7%, P < .01). Health status and comorbidities were also associated with Internet use; 75.5% of veterans with excellent or good health status reported Internet use, compared with 50.4% of veterans with poor or fair health, and 55.1% of veterans with more than one comorbidity reported Internet use compared with 67.8% of those with one or no comorbidities (P < .05). Similar to the results for computer use, only 44.4% of veterans older than 65 years reported Internet use, compared with 70.5% of veterans who were younger (P < .001). When adjusted for multiple characteristics, Internet use was higher for veterans with excellent or good health compared with other veterans (OR ¼ 2.7; 95% CI ¼ 1.6-4.7, P < .001) and for white veterans compared with those of other races and/or ethnicities (OR ¼ 1.9; 95% CI ¼ 1.0-3.5, P < .05). Having more than one comorbidity (OR ¼ 0.6; 95% CI ¼ 0.3-0.9, P < .05) and being older than 65 years (OR ¼ 0.3; 95% CI ¼ 0.2-0.5, P < .001) were significantly associated with lower odds of Internet use compared with veterans who had fewer comorbidities or younger age. Text Messaging Of the 282 veterans who responded to the survey question inquiring about text messaging use, only 26.2% reported that they use text messaging. When asked about frequency of use, 32.4% of text messaging users indicated that they use it daily, 36.6% use it about 2-3 times per week, 12.7% use it once a week, 11.3% use it 2-3 times per month, and 7.0% use it less than once a month. Whereas 32.6% of veterans with a paraplegic
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5
Table 2 Reasons for internet use Reasons for Internet Use
Daily (%)
About 2-3 Times Per Week (%)
Once a Week (%)
About 2-3 Times Per Month (%)
Less Than Once Per Month (%)
Never
E-mail (n ¼ 171) Shopping (n ¼ 170) News (n ¼ 168) Facebook (n ¼ 167) Health information (n ¼ 166) Entertainment (n ¼ 165)
99 17 80 30 16 48
26 14 26 10 20 27
9 25 14 9 24 33
15 33 13 6 29 9
9 47 10 16 48 19
13 34 25 96 29 29
(57.9) (10.0) (47.6) (18.0) (9.6) (29.1)
(15.2) (8.2) (15.5) (6.0) (12.1) (16.4)
level of injury used text messaging, only 19.9% of veterans with tetraplegia used text messaging (P < .05). Similar to computer use, veterans with excellent or good health reported more text messaging use (32.4% versus 20.3%, P < .05) compared with those with fair or poor health, and veterans who were older had less use than younger veterans (12.4% versus 31.8%, P < .01). When adjusted for multiple characteristics, veterans with paraplegia had higher odds of text messaging use compared with veterans who had tetraplegia (OR ¼ 2.2; 95% CI ¼ 1.2-4.1, P < .05), whereas veterans who were older had less text messaging use (OR ¼ 0.3; 95% CI ¼ 0.1-0.7, P < .01). Health status, race, marital status, having more than one comorbidity, and duration of injury were not significantly associated with text messaging use in the adjusted model. Sources for Information About SCI/D The results from the questions about information sources are summarized in Table 3. The most frequent source that veterans turned to for information about SCI/D was a health professional (85.1%); this was also the most frequent source that veterans indicated they would prefer to turn to first to get information about SCI/D (75.8%). Other sources that veterans frequently reported turning to for information about SCI/D included other persons with SCI/D (41.0%), Internet resources (31.0%), and family and friends (28.1%). A subsequent open-ended question item asked respondents about topics that they would like to learn more about to help
(5.3) (14.7) (8.3) (5.4) (14.5) (20.0)
(8.8) (19.4) (7.7) (3.6) (17.5) (5.5)
(5.3) (27.7) (6.0) (9.6) (28.9) (11.5)
(7.6) (20.0) (14.9) (57.5) (17.5) (17.6)
manage their life with SCI/D. Respondents listed a variety of topics that were subsequently grouped into a series of distinct categories, including clinical research for SCI/D, bowel and bladder management, mobility equipment and assistive devices, and pain management. Table 4 summarizes the topics that respondents indicated they would like to learn more about. e-Health Literacy As previously noted, in an effort to examine e-health literacy among respondents, we also administered the eHEALS Scale as part of the survey instrument. The results for each eHEALS question item are presented in Table 5. The mean overall eHEALS score was 27.3 (SD ¼ 7.2). Veterans who reported excellent or good health status had higher eHEALS scores than did veterans who reported fair or poor health status (28.4 versus 25.6, P < .05) in unadjusted analyses; in the adjusted linear regression model, having excellent or good health status was associated with an increase of 2.4 points in eHEALS scores (P < .05). Patient characteristics, including race/ ethnicity, marital status, level of injury, the presence of more than one comorbidity, age, and duration of injury, were not significantly associated with eHEALS scores. We also examined the association between each question item on the eHEALS scale and level of injury. Although 18.4% of veterans with paraplegia strongly agreed that they could tell high-quality resources from low-quality resources on the Internet, only 9.5% of veterans with tetraplegia or missing level of injury strongly agreed with
Table 3 Sources for information about spinal cord injury or disorder Respondents Reporting That They Use It (%) (n ¼ 288)
Respondents Reporting That They Turn to It First (%) (n ¼ 277)
Information Source
Paraplegia (n ¼ 149)
Tetraplegia/(n ¼ 139)
Paraplegia (n ¼ 141)
Tetraplegia/(n ¼ 136)
Health professional Others with SCI/D Internet resources Family and friends Service organizations Mass media (eg, TV and newspapers) Community programs Other (specify)
121 57 46 33 28 17 6 11
124 61 43 48 42 33 10 2
103 9 17 3 3 0 1 5
107 5 13 4 2 1 1 2
(81.2) (38.3) (30.9) (22.2) (18.8) (11.4) (37.5) (7.4)
(89.2) (43.9) (30.9) (34.5)* (30.2)* (23.7)† (7.2) (1.4)*
(73.11) (6.7) (12.1) (2.1) (2.1) (0.7) (3.6)
SCI/D ¼ spinal cord injury or disorder. * P < .05. † P < .01. FLA 5.2.0 DTD PMRJ1540_proof 31 July 2015 2:11 pm ce
(78.7) (3.7) (9.6) (2.9) (1.5) (0.7) (0.7) (2.2)
721 722 723 724 725 726 727 728 729 730 731 732 733 734 735 736 737 738 739 740 741 742 743 744 745 746 747 748 749 750 751 752 753 754 755 756 757 758 759 760 761 762 763 764 765 766 767 768 769 770 771 772 773 774 775 776 777 778 779 780 781 782 783 784 785 786 787 788 789 790 791 792 793 794 795 796 797 798 799 800
Health Information Seeking in Veterans With SCI/D
6 801 802 803 804 805 806 807 808 809 810 811 812 813 814 815 816 817 818 819 820 821 822 823 824 825 826 827 828 829 830 831 832 833 834 835 836 837 838 839 840 841 842 843 844 845 846 847 848 849 850 851 852 853 854 855 856 857 858 859 860 861 862 863 864 865 866 867 868 869 870 871 872 873 874 875 876 877 878 879 880
Table 4 Topics that respondents would like to learn more about Topic Clinical research for SCI/D (eg, cures, treatments, and new therapies) Bowel and bladder management Mobility equipment and assistive devices Pain management Family and community support Nutrition Skin care and wound management Other health conditions (eg, diabetes and hypertension) Financial management and benefits Fitness and weight management Aging with SCI/D Finding health care providers and other specialists Sexual capabilities SCI (general) Employment
No. of Respondents Reporting the Topic 44 27 27 25 16 15 15 14 11 11 10 8 8 4 3
SCI/D ¼ spinal cord injury or disorder.
this statement (P < .014). There was no significant association between level of injury and strength of agreement on other eHEALS question items. Discussion The results from this survey contribute to an expanding evidence base on health information seeking and technology use among persons with SCI/D, while also representing the experiences of U.S. veterans with SCI/D, a population that to date has received less attention in this literature. Comparable to other studies focused outside the veteran population that report high levels of computer use [13,15], nearly 65% of our sample of veterans with SCI/D reported that they use a computer, and more than 71% do so daily. Although computer use is reportedly common, use of assistive equipment with the computer appears more limited, a finding that is also similar to findings of other studies [13,15]. The limited use of assistive devices is offset in our sample, however, by the extent of assistance that veterans with SCI/D receive from other people when
using the computer; nearly half of the computer users (48.5%) reported receiving assistance from others. Unfortunately, it is not possible to ascertain from our survey data what proportion of computer users who reported receiving assistance from others do so because of limited physical function or because of limited technical knowledge about computers. Managing information about one’s health is often a collaborative process [19-21], which has important implications for the design of interventions intended to bolster engagement in care and self-management. An important question is whether the assistance received by veterans with SCI/D also extends beyond computer use to encompass broader health information seeking and management tasks and, if so, how that assistance could be best capitalized upon. About 63% of our sample of veterans with SCI/D reported using the Internet, somewhat less than what has been reported in other studies of persons with SCI/D focused outside the veteran population [13,15]. In addition, whereas online activities like sending/ receiving e-mail, getting news, and accessing entertainment appear to be more common activities, more than 36% of Internet users in our sample reported using the Internet for health information at least once a week or more, and more than 82% reported at least some use of the Internet for this purpose. These findings suggest that veterans with SCI/D use the Internet as a resource for their health; however, as we explain further later in this article, when it comes to gathering information about SCI/D and related topics, other sources appear more important and are more frequently used. Our findings also appear to be the first to explore text messaging use among persons with SCI/D. Limited hand function may pose a challenge to text messaging for many persons with SCI/D. In our sample, only slightly more than a quarter of respondents reported use of text messaging; however, nearly 70% of these users reported using text messaging daily or multiple times a week. Our analyses revealed several important associations between characteristics of veterans with SCI/D and technology use. Notably, self-reported excellent or good health status was associated with more computer,
Table 5 eHEALS measure of e-health literacy Frequency (%) (n ¼ 159) Statement I I I I I I I I
Strongly Disagree Disagree
know what health resources are available on the Internet 8 know where to find helpful health resources on the Internet 8 know how to find helpful health resources on the Internet 9 know how to use the Internet to answer questions about my health 6 know how to use the health information I find on the Internet to help me 5 have the skills I need to evaluate the health resources I find on the Internet 7 can tell high-quality health resources from low-quality health resources on the Internet 13 feel confident in using information from the Internet to make health decisions 14
(5.0) (5.0) (5.7) (3.8) (3.1) (4.4) (8.2) (8.8)
24 23 18 24 18 26 25 23
(15.1) (14.5) (11.3) (15.1) (11.3) (16.4) (15.7) (14.5)
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Neutral
Agree
Strongly Agree
42 28 28 31 44 38 49 66
60 76 76 76 67 64 50 42
25 24 28 22 25 24 22 14
(26.4) (17.6) (17.6) (19.5) (27.7) (23.9) (30.8) (41.5)
(37.7) (47.8) (47.8) (47.8) (42.1) (40.3) (31.5) (26.4)
(15.7) (15.1) (17.6) (13.8) (15.7) (15.1) (13.8) (8.8)
881 882 883 884 885 886 887 888 889 890 891 892 893 894 895 896 897 898 899 900 901 902 903 904 905 906 907 908 909 910 911 912 913 914 915 916 917 918 919 920 921 922 923 924 925 926 927 928 929 930 931 932 933 934 935 936 937 938 939 940 941 942 943 944 945 946 947 948 949 950 951 952 953 954 955 956 957 958 959 960
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Internet, and text messaging use, as well as higher eHEALS scores. We also found associations between race and technology use, with white veterans using computers and the Internet more than veterans of other races/ethnicities, and between age and technology use, with veterans younger than 65 years using computers, the Internet, and text messaging more than their older counterparts. Comparable results are evident in studies focused outside the veteran population. Matter et al [9] found that identifying as non-Hispanic white predicted current and preferred use of the Internet for obtaining information about SCI/D. Similarly, Drainoni et al [15] found significant differences in Internet access among African Americans and Hispanics. Goodman et al [13] reported that Internet use differed significantly by age, with use decreasing as age range increased in their sample of persons with SCI/D. In an observational study like ours, of course, causality cannot be inferred, and a variety of other factors could be influencing these findings. Still, the differences that we have documented across health, racial/ethnic, and age groups are an important reminder that efforts to reach and provide services to veterans with SCI/D through technology must also account for those who need additional support (eg, access to technology and/or training) or who may not use technology at all and require alternative resources. Among our sample of veterans, health professionals are the clear, dominant source for information about SCI/D. These findings are quite similar to those reported in studies focused outside the veteran population. Burkell et al [11] found that more than 91% of their survey respondents used a health care professionaldincluding SCI specialists, general physicians, and other professionalsdas a source for health-related information, and 55% reported that health care professionals are the information source that they use most frequently. In a survey performed by Matter et al [9], health care providers with expertise in SCI/D were the most frequently reported current and preferred information source, and general practice physicians were the third most frequently reported (after SCI research organizations/ associations). In comparison with other patient populations, contact with health professionals is often very frequent among persons with SCI/D, a point that may in part explain this common finding across studies. Specific to veterans with SCI/D, the preference for health professionals may also reflect the range of quality resources and services available through VA’s coordinated system of SCI facilities, including access to dedicated, SCI/D-trained health professionals. After health professionals, our findings about information source use among veterans with SCI/D are more nuanced, although our data do suggest the importance of other people as information sources. Forty-one percent of our sample reported using other persons with SCI/D (ie, peers) for information, and about 28% reported turning to family and friends. The importance of peers as
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information sources and, to a lesser extent, family and friends has also been documented in other studies focused outside the veteran population [9,11]. Despite a mean overall eHEALS score of 27.3, which suggests reasonable levels of self-perceived e-health literacy, the veterans with SCI/D in our sample reported less frequent use of the Internet for information about SCI/D compared with health professionals and peers. To our knowledge, previous studies conducted among nonveterans with SCI/D have not reported eHEALS scores. Although it was beyond the scope of our study to examine in depth the types of Internet resources used by survey respondents, future work should examine the health-related activities in which persons with SCI/D engage online and how those activities could complement the centrality of health professionals and peers as information sources. Our study has some limitations. First, the veterans who participated were recruited through 2 VHA SCI Centers and had recently utilized services at those facilities, both of which limit the generalizability of our findings to the broader population of veterans with SCI/D. We also did not design our survey instrument to examine the attributes of different information sourcesdfor example, perceived availability, quality, or trustworthiness. Further, we did not collect data from survey respondents regarding socioeconomic status and as such are unable to address whether the racial and ethnic differences we observed are actually being driven by socioeconomic issues. Finally, the spread of technology across different segments of the U.S. population continues to change rapidly, and as such, reports of usage trends like those we present here can quickly become outdated. To the extent possible, future work should continue to monitor and update patterns of technology use among persons with SCI/D. Conclusions Our survey findings have revealed fairly high levels of computer and Internet use among veterans with SCI/D. The strong preference for peopledparticularly health professionals, and to a lesser extent, peers and family and friendsdas sources of information about SCI/D and related topics is a particularly salient finding and parallels other studies of health information seeking focused outside the veteran population. Patientcentered care emphasizes the alignment of health care services with the needs and preferences of individual patients. In the case of persons with SCI/D, this may mean recognizing and embracing the central role of health professionals not only as providers of health care services but as critical information sources for patients. The various types of e-health tools that are currently being implemented across health care organizations to empower patients and engage them in their own care may only reach their full potential for persons with SCI/D when combined with efforts to support health professionals in the work of giving and sharing information
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Health Information Seeking in Veterans With SCI/D
and responding to changing information needs over the patient’s trajectory. References 1. National Spinal Cord Injury Statistical Center. Facts and figures at a glance. Available at: https://www.nscisc.uab.edu. Accessed July 16, 2015. 2. Smith BM, Evans CT, Ullrich P, et al. Using VA data for research in persons with spinal cord injuries and disorders: Lessons from SCI QUERI. J Rehabil Res Dev 2010;47:679-688. 3. Bates-Jensen BM, Guihan M, Garber SL, Chin AS, Burns SP. Characteristics of recurrent pressure ulcers in veterans with spinal cord injury. J Spinal Cord Med 2009;32:34-42. 4. Wagner EH. Chronic disease management: What will it take to improve care for chronic illness? Eff Clin Pract 1998;1:2-4. 5. McInnes DK, Gifford AL, Kazis LE, Wagner TH. Disparities in healthrelated internet use by US veterans: Results from a national survey. Inform Prim Care 2010;18:59-68. 6. Agha Z, Lofgren RP, VanRuiswyk JV, Layde PM. Are patients at Veterans Affairs Medical Centers sicker? Arch Intern Med 2000;160: 3252-3257. 7. Edwards L, Krassioukov A, Fehlings MG. Importance of access to research information among individuals with spinal cord injury: Results of an evidenced-based questionnaire. Spinal Cord 2002;40:529-535. 8. Gontkovsky ST. Perceived information needs of communitydwelling persons with chronic spinal cord injury: Findings of a survey and impact of race. Disabil Rehabil 2007;29:1305-1312. 9. Matter B, Feinberg M, Schomer K, Harniss M, Brown P, Johnson K. Information needs of people with spinal cord injuries. J Spinal Cord Med 2009;32:545-554. 10. Scheuringer M, Kirchberger I, Boldt C, et al. Identification of problems in individuals with spinal cord injury from the health professional perspective using the ICF: A worldwide expert survey. Spinal Cord 2010;48:529-536.
Disclosure T.P.H. Center for Healthcare Organization and Implementation Research, eHealth Quality Enhancement Research Initiative, National eHealth Quality Enhancement Research Initiative Coordinating Center, Edith Nourse Rogers Memorial Veterans Hospital, Veterans Health Administration, 200 Springs Rd, Building 70 (152), Bedford, MA 01730; Division of Health Informatics and Implementation Science, Department of Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA. Address correspondence to: T.P.H.; e-mail:
[email protected] Disclosure: nothing to disclose J.N.H. Center of Innovation for Complex Chronic Health Care, Spinal Cord Injury Quality Enhancement Research Initiative, Edward Hines Jr VA Hospital, Veterans Health Administration, Hines, IL Disclosure: nothing to disclose S.L. Center of Innovation for Complex Chronic Health Care, Spinal Cord Injury Quality Enhancement Research Initiative, Edward Hines Jr VA Hospital, Veterans Health Administration, Hines, IL Disclosure: nothing to disclose F.M.W. Center of Innovation for Complex Chronic Health Care, Spinal Cord Injury Quality Enhancement Research Initiative, Edward Hines Jr VA Hospital, Veterans Health Administration, Hines, IL; Stritch School of Medicine, Loyola University, Maywood, IL Disclosure: nothing to disclose
1206 1207 1208 1209 1210 1211 1212 1213 1214 1215 1216 1217 1218 1219 1220 1221 1222 1223 1224 1225 1226 1227 1228 1229 1230 1231 1232 1233 1234 1235 1236 1237 1238 1239 1240 1241 1242 1243 1244 1245 1246 1247 1248 1249 1250 1251 1252 1253 1254 1255 1256 F.P.T. VISN 15 Regional MS Center of Excellence, St. Louis VA Medical Center, 1257 St. Louis, MO; Department of Neurology & Psychiatry, St. Louis University, 1258 St. Louis, MO 1259 1260 Disclosure: nothing to disclose 1261 1262 K.M.N. Veterans and Consumers Health Informatics Office, Office of Informatics 1263 & Analytics, Veterans Health Administration, Washington, DC 1264 Disclosure: nothing to disclose 1265 1266 1267 B.G. Spinal Cord Injury QUERI, SCI/D Services VACO, University of Washington, 1268 Seattle, WA 1269 Disclosure: nothing to disclose 1270 1271 B.M.S. Center of Innovation for Complex Chronic Health Care, Spinal Cord Injury 1272 Quality Enhancement Research Initiative, Edward Hines Jr VA Hospital, Veterans 1273 Health Administration, Hines, IL; Center for Community Health, Northwestern 1274 1275 University, Chicago, IL 1276 Disclosure: nothing to disclose 1277 This article is based upon work supported by the Department of Veterans Affairs, 1278 Veterans Health Administration, Office of Research and Development, Health Q2 1279 1280 Services Research and Development Program, Quality Enhancement Research 1281 Initiative (grant RRP 09-129). 1282 The views expressed in this article are those of the authors and do not neces1283 sarily reflect the position or policy of the Department of Veterans Affairs or the 1284 United States government. 1285 1286 Submitted for publication November 19, 2014; accepted June 28, 2015. 1287 1288 1289 1290
11. Burkell JA, Wolfe DL, Potter PJ, Jutai JW. Information needs and information sources of individuals living with spinal cord injury. Health Info Libr J 2006;23:257-265. 12. Hauber RP, Vesmarovich S, Dufour L. The use of computers and the Internet as a source of health information for people with disabilities. Rehabil Nurs 2002;27:142. 13. Goodman N, Jette AM, Houlihan B, Williams S. Computer and internet use by persons after traumatic spinal cord injury. Arch Phys Med Rehabil 2008;89:1492-1498. 14. Kim J, Park H, Bruce J, et al. Qualitative assessment of Tongue Drive System by people with high-level spinal cord injury. J Rehabil Res Dev 2014;51:451-466. 15. Drainoni M-L, Houlihan B, Williams S, et al. Patterns of internet use by persons with spinal cord injuries and relationship to health-related quality of life. Arch Phys Med Rehabil 2004;85: 1872-1879. 16. Norman CD, Skinner HA. eHEALS: The eHealth Literacy Scale. J Med Internet Res 2006;8:e27. 17. van der Vaart R, van Deursen AJ, Drossaert CH, Taal E, van Dijk JA, van de Laar MA. Does the eHealth Literacy Scale (eHEALS) measure what it intends to measure? Validation of a Dutch version of the eHEALS in two adult populations. J Med Internet Res 2011; 13:e86. 18. Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. J Chronic Dis 1987;40:373-383. 19. Brashers DE, Goldsmith DJ, Hsieh E. Information seeking and avoiding in health contexts. Hum Commun Res 2002;28:258. 20. Hogan T, Brashers D. The theory of communication and uncertainty management: Implications from the wider realm of information behavior. In: Afifi T, Afifi W, eds. Uncertainty, Information Management, and Disclosure Decisions: Theories and Applications. New York, NY: Routledge; 2009. 21. Sadasivam RS, Kinney RL, Lemon SC, Shimada SL, Allison JJ, Houston TK. Internet health information seeking is a team sport: Analysis of the Pew Internet Survey. Int J Med Inform 2013;82:193.
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