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American Oncologists’ Views of Internet Use by Cancer Patients: A Mail Survey of American Society of Clinical Oncology Members

Paul R. Helft, Fay Hlubocky, Christopher K. Daugherty

From the Department of Medicine and Regenstrief Institute for Health Care, Indiana University School of Medicine, Indianapolis, IN; and Department of Medicine, MacLean Center for Clinical Medical Ethics, and Cancer Research Center, University of Chicago, Chicago, IL.

Address reprint requests to Paul R. Helft, MD, Indiana University School of Medicine, 535 Barnhill Dr, Rt 473, Indianapolis, IN 46202; email: phelft{at}iupui.edu.

	ABSTRACT

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Purpose: Americans are turning more and more frequently to the Internet to obtain health information. The specific effects on patients, doctors, and the clinical encounter are not well known.

Methods: A brief mail survey was sent to a systematic sample of 5% of medical oncologists and hematologist/oncologists listed in the membership directory of the American Society of Clinical Oncology.

Results: Response rate to this mail survey was 46.2%. Oncologists’ median estimate of the proportion of their patients using the Internet to obtain cancer information was 30%. Subjects responded that, on average, 10 minutes were added to each patient encounter in which Internet information was discussed. Responding oncologists reported that use of the Internet had the ability to simultaneously make patients more hopeful, confused, anxious, and knowledgeable. Forty-four percent of responding oncologists reported that they sometimes or rarely had difficulty discussing Internet information, and only 9% of subjects reported that they sometimes or always felt threatened when patients brought Internet information to discuss. In narrative responses, oncologists reported both positive and negative effects of Internet use by patients.

Conclusion: In this brief mail survey to a systematic sample of American oncologists in academic and community practice, respondents reported that a significant proportion of their patients use the Internet to obtain cancer information. Oncologists viewed Internet information as having both positive and negative effects on the clinical encounter. Further research is needed on the effects of patients’ use of the Internet to obtain cancer information involving both patients and oncologists.

	INTRODUCTION

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AMERICANS ARE turning more and more frequently to the Internet to obtain health information. In a recent large study,¹ it was found that more than 52 million Americans have sought health information on the Internet. On an average day, 5.5 million Americans reported looking up health information. More than half of all those who had used the Internet to access health information reported that it improved the way they obtained health information, and 70% of users reported that the information they found affected a health care decision. Half of these Internet users reported that the information they found on the Internet prompted them to ask their doctors new questions or to seek a second opinion.

Although there is an increasing amount of published empirical information specific to cancer patients and their use of Internet information, there is little in-depth information about its effects on the clinical setting. Also, there is almost no information regarding oncologists’ attitudes about their patients’ use. Estimates of frequency of use among American cancer patients range from 6% (at a Veterans Administration hospital) to 44% (at an urban academic medical center).^2–5 One recent study examined use of the media and the Internet to obtain cancer information among 191 Canadian cancer patients and perceptions of use among 410 Canadian oncologists.² These authors found that 56% of the patients surveyed reported use of the Internet to obtain cancer information. More than half of the surveyed patients who actively searched for information on the Internet sometimes questioned their oncologist’s advice or recommendations. Almost a quarter of surveyed patients expected their oncologist to spend 30 minutes discussing the information. Although large numbers of Americans are currently seeking health information on the Internet, it remains unknown what effect cancer patients’ interest in Internet health information is having on actual clinical encounters in oncology. More specifically, the effects of cancer patients’ Internet information–seeking practices on oncologists themselves have not been described.

In an attempt to begin to understand American oncologists’ perceptions of their cancer patients’ use of the Internet, we surveyed a systematic sample of oncologists practicing in the United States. Institutional review board approval was obtained before initiation of the study.

	METHODS

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Subjects
Subjects were selected from the American Society of Clinical Oncology (ASCO) Membership Directory for the year 2000.⁶ Although ASCO has more than 16,000 members from 100 countries, the majority of members come from the United States.⁷ Because the focus of this study was practicing American medical oncologists, only physician members listing their specialties as medical oncology or medical oncology/hematology and providing mailing addresses within the United States were systematically sampled from the approximately 13,700 members listed in the 2000 ASCO directory. The intention of the survey was to sample approximately 5% of this group of the more than 9,100 such members, yielding 622 subjects (or one of every 14 oncologists). A systematic sample of oncologists was drawn from the 2000 ASCO directory by starting with a random entry and selecting every 14th member listing his or her specialty as medical oncology or medical oncology/hematology. Details are available on request. Surveys were then mailed to the 622 eligible subjects based on the above systematic algorithm. A total of three mailings were performed, with the second and third mailings sent to nonresponders.

Survey Instrument
The survey instrument mailed to subjects was developed by the investigators. It consisted of six demographic questions and 10 survey questions with both quantitative and qualitative items. (The survey instrument is included in the Appendix, found online at www.jco.org). These questions were printed on two sides of a sheet of card-stock and were mailed with a cover letter explaining the purpose of the study and soliciting responses. Each survey form could be folded in thirds, was sealed with an adhesive strip, and was self-addressed and stamped for easy return to the study investigators. Demographic questions included a description of the subject’s primary specialty, sex, practice affiliation (university or community), years since completion of formal training, physician’s own Internet access, and frequency of Internet use. Subjects were grouped geographically into one of five regions for analysis. Survey items asked subjects to estimate the following: the proportion of their patients they believed were obtaining information about cancer from the Internet and the proportion of these patients bringing information to discuss; how often subjects discussed this information with patients and whether these discussions increased or decreased the amount of time spent in patient encounters; whether the information made patients more or less hopeful about their disease, as well as the effects on confusion, anxiety, and understanding. These variables were based on previous pilot work indicating that increased confusion, anxiety, and understanding were all commonly experienced by cancer patients who reported Internet use.³ Subjects were also asked how often (if ever) they had difficulty discussing Internet information with their patients and how much (if at all) they ever felt threatened when patients brought Internet information to discuss. Finally, subjects were asked to give a qualitative written description or example of a clinical encounter that they felt summarized the effect of use of the Internet on patients and on the oncologist-patient encounter.

Statistical Analyses
All data were coded and entered into a database using standard statistical software (SAS Release 8.02; SAS Institute, Cary, NC). Missing responses, responses that did not fit into one of the specific item responses, and items in which subjects provided more than one response to a survey item were all considered missing. Descriptive statistics are reported as proportions. To test for an association between demographic variables (eg, sex and affiliation) with continuous responses, two-sample t tests were performed. To test for an association between demographic variables and the ordinal responses, Mann-Whitney tests were performed. To test for an association between years since completing formal training and continuous variables, Pearson’s correlation coefficient was calculated and tested for equivalence to zero. Spearman’s correlation coefficient was calculated and tested for equivalence to zero to test for an association between years since completing formal training and the ordinal variables and to test for an association between frequency of Internet use and all responses. Responses to the qualitative question asking for an example that summarized the specific effect of Internet information on at least one patient were read by two investigators (P.R.H. and a research assistant) and coded according to whether oncologists described the examples as positive, negative, or mixed experiences.

	RESULTS

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A total of three survey mailings were completed between May 2001 and September 2001. In all, 622 surveys were mailed and 31 were returned unopened, leaving 591 surveys. Fifteen respondents were retired, leaving a total of 576 eligible subjects. Two hundred sixty-six completed surveys were returned, for a total response rate of 46.2% after three mailings.

Demographic Data
Demographics for responding subjects are listed in Table 1. There was no difference between male and female oncologists in their reported frequency of Internet use. Oncologists with a university affiliation were significantly more likely to report more frequent Internet use than those with community affiliations (P = .0023). The longer a subject had been in practice, the less likely he/she was to report frequent Internet use (r = -0.12; P = .0533).

Subjects were asked to describe the degree to which the time they spent discussing information from the Internet with patients had changed in the past 5 years. Ninety-eight percent of respondents stated that the time spent discussing Internet information had increased. Female oncologists were more likely than male oncologists to report that the amount of time spent discussing Internet information with patients had increased over the last 5 years (P = .0029).

When asked how much time was added or subtracted on average to each patient encounter, subjects responded that 10 minutes were added to each patient encounter when Internet information was discussed (median, 10 minutes; range, 0 to 37 minutes; mode, 10 minutes). One subject answered that discussing Internet information shortened the patient encounter.

Effects of Internet Information
Subjects were queried about specific effects they thought use of Internet information was having on their patients. Results from these questions are summarized in Table 3. Subjects were asked if they thought that the information encountered on the Internet made patients more hopeful about their disease and, if so, whether this was perceived as a good or a bad thing. More than half (57%) of responding subjects reported that they felt Internet information made patients more hopeful about their disease. Of these, subjects were equally divided on whether they felt Internet-induced hopefulness was a good or bad thing. Oncologists who reported that Internet information makes patients less hopeful were more likely to have been in practice longer (r = 0.15; P = .0229). Subjects from Western states were more likely to report that Internet information increases patients’ understanding of their disease (P = .0087). This was the only statistically significant geographic variation found in the analysis.

View larger version (25K): [in this window] [in a new window]   Fig 1. Effects of Internet use on confusion, anxiety, and understanding.

Summary of Qualitative Responses
The final survey question asked subjects to provide a written example that they felt summarized the specific effect that Internet information had on at least one patient and on the subject’s relationship with that patient. One hundred fifty (56% of the sample) oncologists wrote responses to this question. Except for five responses that could not be coded because of inability to either read or interpret the oncologists’ written examples, subjects characterized the effects of Internet information on patients as either negative or positive.

Negative Responses
Eighty-one responding subjects (54%) described the Internet as having had a negative effect on their patients and/or on the patient-physician relationship. This was primarily attributed to increased confusion resulting from Internet information that was believed by the oncologist to be either inaccurate or inappropriate for the patient’s described situation. Respondents commented that some patients developed unrealistic hopes and others suffered needless anxiety as a result of either inaccurate or inappropriate information. Some oncologists complained that the confusion some patients experienced added strain to the patient-physician relationship and caused some patients to question the treatment options offered by the physician. For example, many oncologists described patients who requested specific treatments that, although potentially in use as approved agents or as part of a clinical trial for specific disease states, were inappropriate for the described patient. Others commented that patients’ confusion added unnecessary time to patient-physician encounters, as physicians had to re-educate the patient. One physician commented, "A little knowledge is a dangerous thing." Eight oncologists mentioned the abundance of information on the Internet regarding alternative treatments, and several of these oncologists expressed concern that many of these treatments were falsely presented as having proven benefit. Two of these respondents described patients who delayed or refused conventional treatment and instead chose to pursue alternative treatments found on the Internet.

Positive Responses
Fifty-four responding oncologists (36%) stated that the Internet had a positive effect on their patients and/or on the patient-physician relationship. Six oncologists described learning of specific (and patient-appropriate) clinical trials from patients who had discovered them on the Internet. Twelve oncologists commented that the patient-physician relationship was strengthened after open discussions about information obtained from the Internet, especially when the information affirmed a treatment recommendation the oncologist had already offered. One oncologist commented on a patient’s improved confidence in their relationship after a lengthy discussion about why a particular treatment found on the Internet would not be beneficial. Seven oncologists noted that Internet information gave patients the opportunity to have "more equal, intellectual discussions" and helped them feel more in control of their lives and their disease. Twenty-nine oncologists volunteered that they welcomed the use of the Internet by their patients. These oncologists felt that patients who received information from the Internet understood their disease and their treatment options better than those who relied solely on their physicians and that this increased understanding led to a more satisfying patient-physician relationship. One such physician noted, "The more you know about your enemy, the better you can fight."

	DISCUSSION

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Use of the Internet to obtain health information is increasing at an extremely rapid rate. A significant proportion of cancer patients seem to be using the Internet to obtain information about their disease, and many are bringing information to their oncologists for discussion. The effect of this phenomenon on patient care, decision making, and outcomes is unknown. American oncologists’ perceptions of the effect on clinical encounters was the subject of this brief mail survey sent to a systematic sample of approximately 5% of the ASCO membership listing their specialties as medical oncology or medical oncology/hematology.

Several conclusions are supported by the data from this study. First, our finding that oncologists estimated that 30% of their patients use the Internet to obtain cancer information is consistent with previous reports of cancer patients’ use.^2–5 Although little empiric information is available with respect to rates of use of the Internet among cancer patients specifically, rates of use in the available literature range from 6% of cancer patients at a Veterans Administration hospital in Philadelphia, PA, to 50% of patients at an academic hospital in Toronto, Ontario, Canada. The average rates of use among North American cancer patients in the published literature is 31%, indicating that the estimates provided by oncologists in this survey are accurate. On average, oncologists estimated that only one third of their patients who seek information on the Internet actually bring the information to them for discussion. Although the actual reasons patients may have for not bringing Internet information they find to discuss with their oncologists cannot be discovered without directly studying patients themselves, results from this survey indicate some reasons patients may choose not to discuss the information. One possible reason is that some patients may actually recognize that their oncologists either have difficulty discussing Internet information or feel threatened by the behavior and thus choose not to discuss the information with their oncologists. In fact, although few in number, those oncologists who admitted to having some difficulty discussing Internet information with their patients were more likely to report feeling threatened when patients brought in information to discuss. The highly significant correlation between responses to these questions indicates that the potential threat to authority posed by patients’ use of Internet information may be one reason some oncologists have difficulty discussing Internet information with their patients. Another hypothesis supported by the data from this study is that patients’ reactions to Internet information may also contribute to oncologists’ difficulty discussing it with them. Those subjects who reported that Internet information makes patients more confused (P = .0912) or more anxious (P = .0507) were more likely to report that they had difficulty discussing information with their patients.

Second, oncologists reported that discussing Internet information adds an extra 10 minutes to a clinical encounter. Even if a relatively small number of patients bring Internet information to discuss, for busy oncologists, this would add a significant amount of time to their overall time spent in clinical encounters. Such increases in time spent in the clinical encounter are not necessarily a bad thing. There is evidence from this study that oncologists view patients’ use of the Internet to obtain cancer information both as a positive and negative change. The extra time added would be a negative change if the time is used mostly to clear up confusions or false hopes created by Internet information. However, this may prove to be time well spent if the Internet is, in the end, improving patients’ understanding of their disease. As described in the results, approximately 75% of oncologists reported that the Internet increased patients’ understanding of their disease, with oncologists from Western states being more likely to report this. Thus, the evidence from this study provides support that many oncologists do not view discussing Internet cancer information with patients negatively, even if it is an overall time-increasing experience.

The apparently low rate at which patients are reported to bring Internet information to discuss is a concern given the well-known questions about the quality of Internet information.^8–18 Our study in fact indicates that oncologists believe that some patients become more confused after reading Internet information and would therefore be likely to benefit from clarifications their oncologists might offer. The narrative answers to the final survey question also raise the ominous possibility that some oncologists believe that patients sometimes ignore their recommendations and opt for alternative treatments to the exclusion of more conventional therapies due in part to Internet information they encounter.

Last, in general, medical oncologists seem to use the Internet a great deal, with 70% of respondents reporting daily or more than daily use, although oncologists in practice longer were less likely to use the Internet frequently. Oncologists who stated they had a university affiliation described using the Internet more frequently than their colleagues in the community. Although we did not specifically ask oncologists what they were using the Internet for, we assume that, given the overall context of the survey, it is predominantly for health-related issues. The lack of geographic variation in responses to survey items indicates that the Internet has penetrated patients, oncologists, and their clinical encounters fairly uniformly.

We recognize that this study has several limitations. The overall response rate to this mail survey was less than 50% and thus may not be representative of all American medical oncologists. Although this is a relatively lower response rate compared with other described surveys of ASCO physicians,¹⁹ it is consistent with many previously reported response rates to mail surveys of physicians.^20,21 A higher response rate might have led to different conclusions. In addition, study subjects were chosen through systematic sampling rather than a truly random sample. Bias introduced because of this cannot be excluded. The subjects of the study included only American medical oncologists who were members of ASCO and therefore had their names in the ASCO directory. No conclusions about the opinions of surgical oncologists, radiation oncologists, or nonmembers of ASCO are possible. Most important, we have relied on oncologists’ retrospective and subjective reports and estimates for our results. Thus, caution should be used when interpreting objective findings, such as the actual frequency of Internet use by cancer patients. Moreover, oncologists’ perceptions of effects on patients are not likely to be a completely accurate surrogate for patients’ own perceptions, either of how Internet use affects anxiety, understanding, and confusion or how this use affects their experiences with oncologists.

In general, results from this mail survey indicate that oncologists’ views of their cancer patients’ widespread use of the Internet to obtain cancer information is having both positive and negative effects on patients and on oncologist-patient encounters. Although Internet information is perceived by medical oncologists as having the potential to create both confusion and anxiety in many patients, it may actually increase understanding for an even larger proportion of them. Confusion, anxiety, and false hopes may have the potential to harm patients and to harm the oncologist-patient relationship, especially if patients find the information on the Internet more credible than the information provided to them by their oncologist.

Despite its apparent potential for harm, we believe that discussing Internet information can best be viewed as an opportunity to strengthen the physician-patient relationship. Internet-generated confusion and anxiety may make discussing Internet information more difficult, but it may also be viewed as an opportunity to clarify information and relieve anxiety, thus potentially strengthening rapport with patients. Such a belief is echoed in many of the written examples provided by medical oncologists in our survey. These opportunities for discussion may provide confirmation of oncologists’ recommendations or lead to more productive discussion of the often complex issues involved in treatment decision making. Further research involving cancer patients and their oncologists aimed at defining the specific positive and negative effects that Internet information may be having on both parties is needed to clarify these issues.

	APPENDIX

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View larger version (37K): [in this window] [in a new window]   Appendix

	NOTES

 
Supported by grants from the National Institutes of Health (C.K.D.; grant no. RO1 CA 087605-01A1), the Greenwall Foundation Program in Bioethics (C.K.D., P.R.H.), and the American Society of Clinical Oncology (P.R.H., Young Investigator Award).

	REFERENCES

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1. Pew Research Center: The Online Health Care Revolution: How The Web Helps Americans Take Better Care Of Themselves. http://www.pewinternet.org/reports/toc.asp?Report=26. Accessed January 9, 2003

2. Chen X, Siu LL: Impact of the media and the Internet on oncology: Survey of cancer patients and oncologists in Canada. J Clin Oncol 19:4291–4297, 2001[Abstract/Free Full Text]

3. Helft PR, Hlubocky F, Gordon EJ, at al: Hope and the media in advanced cancer patients. Proc Am Soc Clin Oncol 19:633a, 2000 (abstr 2497)

4. Metz JM, Devine P, DeNittis A, et al: Utilization of the Internet by oncology patients to obtain cancer related information. Proc Am Soc Clin Oncol 20:395a, 2001 (abstr 1575)

5. Yakren S, Shi W, Thaler H, et al: Use of Internet and other information resources among adult cancer patients and their companions. Proc Am Soc Clin Oncol 20:398a, 2001 (abstr 1589)

6. American Society of Clinical Oncology: ASCO 2000 Membership Directory. Chestnut Hill, MA, ASCO Publications Department, 2000

7. American Society of Clinical Oncology: ASCO Profile (vol 2002). Chestnut Hill, MA, American Society of Clinical Oncology, 2002

8. Cline RJW: Consumer health information seeking on the Internet: The state of the art. Health Educ Res 16:671–692, 2001[Abstract/Free Full Text]

9. Ferguson T: From patients to end users: Quality of online patient networks needs more attention than quality of online health information. Br Med J 324:555–556, 2002[Free Full Text]

10. Gagliardi A, Jadad AR: Examination of instruments used to rate quality of health information on the Internet: Chronicle of a voyage with an unclear destination. Br Med J 324:569–573, 2002[Abstract/Free Full Text]

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12. Kunst H, Groot D, Latthe PM, et al: Accuracy of information on apparently credible web sites: Survey of five common health topics. Br Med J 324:581–582, 2002[Free Full Text]

13. McLeod SD: The quality of medical information on the Internet: A new public health concern. Arch Ophthalmol 116:1663–1665, 1998[Free Full Text]

14. Phillips DF: Is the Internet a health hazard? Hosp Technol Ser 15:4–5, 1996[Medline]

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16. Silberg WM, Lundberg GD, Musacchio RA: Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor—Let the reader and viewer beware. J Am Med Assoc 277:1244–1245, 1997[Abstract/Free Full Text]

17. Sonnenberg FA: Health information on the Internet: Opportunities and pitfalls. Arch Intern Med 157:151–152, 1997[Abstract/Free Full Text]

18. Wilson P: How to find the good and avoid the bad or ugly: A short guide to tools for rating quality of health information on the Internet. Br Med J 324:598–600, 2002[Free Full Text]

19. Emanuel EJ, Fairclough D, Clarridge BC, et al: Attitudes and practices of U.S. oncologists regarding euthanasia and physician-assisted suicide. Ann Intern Med 133:527–532, 2000[Abstract/Free Full Text]

20. Kellerman SE, Herold J: Physician response to surveys: A review of the literature. Am J Prev Med 20:61–67, 2000

21. Martin BC (ed): Don’t Survey Physicians! Chicago, IL, American Medical Association, Center for Health Services Research, 1974

Submitted August 1, 2002; accepted November 13, 2002.

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