The use of the Internet as a resource for health information among patients attending a rheumatology clinic

M.-M. Gordon, H. A. Capell1 and R. Madhok1

Gartnavel General Hospital and
1 Centre for Rheumatic Diseases, Glasgow Royal Infirmary, Glasgow, UK


    Abstract
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Objectives. To determine the proportion of patients attending a rheumatology clinic who have access to a computer with Internet capabilities, to establish how often they search for health information, and how difficult or useful they find this resource.

Methods. We performed a questionnaire-based study of consecutive patients attending a rheumatology clinic in two city teaching hospitals over a 1 week period. Patients were asked if they owned or had access to a computer with Internet capabilities, and if they had searched for information on shopping, holidays, entertainment or health information. Further questions were then directed at the nature of the health information, how useful it was and how easy the patient found it to access the details. Patient demographic data were obtained by case record review.

Results. One hundred and forty patients were approached; 138 completed questionnaires were collected. One hundred and one respondents (73%) were female. Median patient age was 58 yr (range 18–84). One hundred and seven (78%) had rheumatoid arthritis, with median disease duration of 8 yr (range 6 months to 49 yr). Sixty (43%) had access to the Internet, mostly at home, and used it most frequently for holiday information. Thirty-seven (27% of all respondents) reported that they had searched for medical information on a median of 2 (range 1–10) occasions in the previous 12 months. Of these, 83% perceived the information as useful, 54% discovered something they had not previously known and 31% reported it was easier than asking their doctor or nurse. Patients searched on-line for information on their arthritis (83%), drug treatment (54%), alternative therapies (31%), diet and arthritis (46%) and patient organizations (11%). No patients recalled being advised to search for information by their doctor or nurse. Patients who searched for medical information were younger (median age 48 vs 62 yr; P<0.001), more likely to be employed (32 vs 16%) and more likely to be married or in a stable relationship (84 vs 66%); there were no differences in sex distribution, diagnosis, disease duration or social deprivation.

Conclusions. One in four patients attending our rheumatology clinic had searched the Internet for medical information in the last 12 months. Almost one-third found it easier than asking their health-care professional. Further studies are required to explore the wider application of this resource and to determine the validity and reliability of the information obtained.


    Introduction
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
The sight of a patient clutching a sheaf of paper generated by an Internet search is one not unfamiliar to many doctors. Particularly with chronic diseases, such as rheumatoid arthritis (RA), patients are looking for more information on their illness, prognosis and treatment, both conventional and alternative. They may obtain information from reliable sources, such as their general practitioner or specialist, or from sources perceived to be less reliable, such as friends, relatives, media and, increasingly, the Internet. Worldwide, 215.5 million English-speaking people have access to the Internet, of whom 21 million reside in the UK [1]. The Internet was originally proposed in 1989 and first implemented in 1990, since when there has been remarkable global expansion, particularly of the World Wide Web, with a doubling period of approximately 5 months. In November 1999, it was estimated that 27% of adults in the UK were using the Internet on a regular basis [2] and a further survey found that 84% of all users felt the Internet was indispensable [3]. Those aged between 19 and 50 yr were most frequently on-line and the commonest reason for using the Internet was for personal shopping (65%, for unspecified items).

The Internet is useful in delivering medical information to its target audience and may change the way the disease is self-managed [4]. The main drawback lies in the fact that the Web is unregulated and the quality of the medical information is variable [5]. Recently, using the term ‘RA’, Suarez-Almazor et al. [6] analysed 537 hits. Only 51% were considered to be relevant, 51% were the site of a profit industry and 44% promoted alternative therapies. They concluded that many easily accessible sites are run by profit-based companies advertising an alternative medicine product with claims of benefit in RA.

Our aim was to determine the proportion of patients attending our rheumatology clinic who use the Internet as a medical information resource and to establish how difficult or useful they found this resource.


    Patients and methods
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
During one week in April 2001, all consecutive patients attending general rheumatology clinics for at least a third occasion in two city-centre teaching hospitals were invited to participate in our study. A self-administered questionnaire was designed and pretested in a small number of in-patients. The patients were asked to complete the 10-question sheet without prompting.

Initial questions were on patient access to a computer and, if the patient did have access, whether it was at home, work or at another site, such as a library. We then asked if they or a relative had ever searched the Internet for information on shopping, holidays, entertainment or medical topics. Further questions determined how often they had searched for health information, how informative this was, how easy it was to find the information and if this was an easier way of obtaining information than asking their doctor or nurse. The information was categorized into specific details on arthritis, drug treatment, alternative medicines, arthritis and diet, patient organizations, osteoporosis or free text for other information. Finally, the patients were asked if they had ever been advised by a doctor or nurse to look for health information on the Internet.

During the initial pilot project, we asked the patients which sites they had accessed. It became clear that the patients could not recall which sites were accessed, or even which search engine they had used. We therefore did not ask this in the full study.

Patient demographic data were collected on age, sex, marital status, occupation, number and ages of any children, and smoking details. Rheumatological diagnosis, disease duration and comorbid conditions were established by case record review. Social deprivation was assessed with the Carstairs code [7]. This is a composite score derived from the postcode and is based on male unemployment, overcrowding, car ownership and social class. Patients are categorized into groups ranging from the most affluent (group 1) to the most deprived (group 7).


    Results
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
One hundred and forty patients were approached and invited to complete the questionnaire. Two declined, without offering a reason. The majority of respondents, 101 (73%), were female, with a median age of 58 yr (range 18–84). The commonest rheumatological diagnosis was RA, in 107 (78%), followed by osteoarthritis in 14 (10%), psoriatic arthritis in eight (6%), systemic lupus erythematosus in one patient and eight other diagnoses in the remaining patients, including Sjögren's syndrome, ankylosing spondylitis and unspecified seronegative arthropathy. For the entire group, the median disease duration was 8 yr (range 6 months to 49 yr). Comorbidity was common, with an additional 124 co-existing conditions, including hypertension, ischaemic heart disease, diabetes, osteoporosis, peptic ulcer disease or chronic obstructive airways disease. Forty-one (30%) of the patients were current smokers and 48 (35%) ex-smokers.

Ninety-eight (71%) were married or in a stable relationship and had a median of two children (range 0–6). Only 28 (20%) of our cohort were employed; 58 (42%) were housewives and 45 (33%) retired. Patient demographics are shown in Table 1Go.


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TABLE 1. Sociodemographics of patients answering the questionnaire

 
Overall, 60 (43%) patients had access to a computer with Internet facilities. Access was at home for 37 (27%), at work for eight (6%) and elsewhere for 15 (11%). The commonest reason for using the Internet was to search for holiday information, by 45 patients (33%). The second most common reason for using the Internet was to search for medical information, by 37 patients (27%), followed by entertainment, by 29 (21%), and personal shopping, by 22 (16%). An additional 19 (14%) had been given medical information by a friend or a relative.

Of the 37 patients who searched for medical information, 83% found it useful, 54% found information not previously known and 31% reported it was easier than asking their doctor or nurse. They had searched for medical information on a median of two (range 1–10) occasions in the preceding 12 months. Patients searched on-line for information in a number of categories, most frequently for information on their arthritis or drug treatment for their arthritis, but also on alternative medicines or dietary therapies, as shown in Table 2Go. Only two patients had looked for information on their comorbid conditions.


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TABLE 2. Categories in which patients sought medical information

 
Most patients reported that it was very easy (15 patients, 41%) or quite easy (13 patients, 35%) to find the desired information, although 4 (11%) were unable to find the information. No patients recalled ever being advised by a doctor or nurse to search the Internet for information on their medical diagnosis.

The patients who searched for medical information on the Internet were younger, with a median age of 48 yr (range 23–77), compared with those who did not use the Internet (P<0.001). There was no difference in sex distribution (78% female sex) or rheumatological diagnosis, although median disease duration was shorter, at 5 yr (range 6 months to 36 yr). Although more of our patients were female, the proportion of male patients who searched for information was similar to the proportion of male patients who did not access medical information from the Internet. More of this group were employed (32%) and fewer were retired (16 vs 38%). The comparisons between patient groups are shown in Table 3Go.


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TABLE 3. Demographic variations between patients who had searched the Internet for medical information compared with those who had never searched the Internet

 
Social deprivation was categorized by the Carstairs code. There were no differences in deprivation indices between those who searched the Internet and those who did not (Table 4Go).


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TABLE 4. Deprivation (Carstairs) codes for those who searched for medical information and those who did not search the Internet

 


    Discussion
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
This study shows that one in four of the patients attending our rheumatology clinic have obtained medical information from the Internet in the last 12 months. The patients most likely to search the Internet were female, of a younger age than the general clinic population and more likely to be employed and married than those who did not search the Internet. The patients found it relatively easy to obtain the medical information, and more than half discovered information not previously known. Almost one-third found it easier than asking their health-care professional. Perhaps surprisingly in this age of information technology, no patient had ever been advised by a doctor or nurse to search the Internet for information relevant to his or her medical diagnosis, although this may have been due to failure to recall in this questionnaire-based study.

Access to the Internet is readily available in developed countries and provides an easy, accessible medium for a substantial proportion of patients with chronic diseases to access health information. The main difficulty is that the information is under no guidance or regulation and therefore of questionable reliability. One group examined the availability of rheumatology resources on the Internet and found that 67% originated from medical organizations and over half contained an advertisement [8]. They reported that the material was time-consuming to access and they found little that was directed solely at patient education. Other groups have confirmed that the information is often difficult to find, of poor quality and littered with irrelevant sites, often promotional in nature [6, 9]. The volume of information is often overwhelming and it continues to expand rapidly. Edworthy [10] repeated the search carried out by Suarez-Almazor et al. [6] and found that there had been a 10-fold increase in the number of hits in the 2-yr period after the original search.

Without proper guidance, the information found by a patient could become harmful or distracting rather than helpful. Considering that one-quarter of our patients are accessing information in this way, they should be directed towards reliable, easily accessible sites. Many organizations and companies now have their own web site, with control and regulation of the quality and quantity of information. The Internet is a tremendous resource, both for professionals and patients. One rheumatology group has established their own information network, and has reported their success [11]. It is likely that this will be expanded to be used for patient information bulletin boards, educational tools for medical students, professional training and so on. Increasingly, conferences are arranged on-line, and several medical journals have additional information exclusive to the on-line version. This information is then much more readily available to patients than it is with paper versions.

As in other clinic populations [12], one in four of our patients are accessing health information from the Internet, and indeed, half the patients who have computer access already search for medical information. By encompassing the growing importance of the Internet, we can use it to impart information to other professionals and to tailor the information to our patient population. Additional research is required to explore the effects of exposure to this information on our patients' attitudes, expectations, behaviour and outcome.


    Notes
 
Correspondence to: M.-M. Gordon, Department of Rheumatology (Floor 7), Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 OYN, UK. Back


    References
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 

  1. Global Internet Statistics (by language). Accessed November 2001. http://www.euromktg.com/globstats/
  2. The Internet Index. Accessed November 2001. http://www.treese.org/intindex/99–11.htm
  3. GVUs 8th WWW survey results. Accessed November 2001. http://www.gvu.gatech.edu/user_surveys/survey-1997–10/#exec
  4. Wilson AS, Kitas GD, Llewellyn P et al. Provision of Internet-based rheumatology education (http://rheuma.bham.ac.uk). Rheumatology2001;40:645–51.[Abstract/Free Full Text]
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  6. Suarez-Almazor ME, Kendall CJ, Dorgan M. Surfing the net—information on the World Wide Web for persons with arthritis: patient empowerment—or patient deceit? J Rheumatol2001;28:185–91.[ISI][Medline]
  7. Carstairs V, Morris R. Deprivation and health in Scotland. Aberdeen: Aberdeen University Press,1991.
  8. Tench CM, Clunie GP, Dacre J, Peacock A. An insight into rheumatology resources available on the World Wide Web. Br J Rheumatol1998;37:1233–5.[ISI][Medline]
  9. Soot LC, Moneta GL, Edwards JM. Vascular surgery and the Internet: a poor source of patient-orientated information. J Vascular Surg1999;30:84–91.[ISI][Medline]
  10. Edworthy SM. Crawling through the web: what do our patients find? J Rheumatol2001;28:1–2.[Medline]
  11. Specker C, Richter J, Take A, Sangha O, Schneider M. RheumaNet—a novel Internet-based rheumatology information network in Germany. Br J Rheumatol1998;37:1015–9.[ISI][Medline]
  12. O'Connor JB, Johanson JF. Use of the Web for medical information by a gastroenterology clinic population. J Am Med Assoc2000;284:1962–4.[Abstract/Free Full Text]
Submitted 26 April 2002; Accepted 21 May 2002