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Issue 93, June 2006

Use of the Internet to Obtain Information on
Huntington’s Disease

Clinical experience suggests that the Internet is increasingly becoming an information resource for patients attending Genetics’ Clinics. Accessing medical sites has enabled individuals to obtain literature on rare genetic conditions, such as Huntington’s Disease (HD) that may affect them or their families. Little is known about how patients and their families experience accessing medical information about HD in this way or how they reconcile the information they obtain with that provided by clinicians. In order to evaluate the extent and nature of Internet use amongst families with HD, and the impact of this phenomenon on genetic counselling, 41 family members attending a regional genetics clinic were asked to complete a semi-structured questionnaire. The questionnaire was designed to identify factors associated with Internet use and to explore participant’s experiences of this mode of information gathering.

The participants in this study comprised 23 females and 18 males. The questionnaire was completed by 9 individuals at risk of inheriting the HD gene, 6 symptomatic patients, 17 patients who had tested positive for the HD gene and 9 spouses and partners. Interestingly most of the participants (82%) did have access to the Internet. People accessed the Internet at home and in the work place. Of those who did not have Internet access or felt that they lacked the skills to use it, a number felt that they would be able to ask a friend or relative to look up information for them.

Not surprisingly older people are less likely to use the Internet than younger people although several in the 50-65 age group regularly used the Internet.

I was interested to see if families would use the Internet to obtain information about general health and 78% of participants said they would. As might be expected more women than men said they would use the Internet to look for health related sites.

Patients had several ways of obtaining information about HD. The most commonly cited source of information was the Huntington’s Disease Association, followed by the Internet, their GP and the local Genetics Department. It can be argued that this represents a logical progression in the process of those attending a genetic clinic in seeking information about a genetic condition, starting with one source of information, seeking further clarification from another source and drawing on a combination of medical and non-medical sources. Other sources quoted were ‘my family’, ‘TV programmes’ and ‘my annual clinic visit’.

In order to gain a better impression of how satisfied respondents were with Internet information related to HD, I used a satisfaction index scale. Participants were asked to answer 14 questions on Internet use and HD. The data revealed that there was general satisfaction with Internet use with the following two points scoring highest. Patients had not found genetic information on the Internet that contradicted what their doctor had told them and most participants would not use the Internet to learn about other families with similar genetic conditions.

Most respondents (88%) had told their partner or family that they had looked on the Internet for information on HD. However some of the comments made were interesting.

· ‘I couldn’t look’
· ‘I didn’t want to upset my family’
· ‘I don’t have anyone to tell’
· ‘I printed off the information to show my family’
· ‘The whole family have looked and are involved’

What emerges from these comments are the desire not to cause distress within the family, and the feeling of isolation and anxiety. On the positive side many felt that this form of communication can bring families together.

Another aspect of this study was to find out if patients had found anything regarding HD that had worried or upset them. 88% had not found anything of a distressing nature on the Internet. However a small number had been upset by their Internet experience and the comments below most likely reflect the often overwhelming impact of this condition and the very individual concerns that people have when faced with this disease for the first time.

· ‘they said the age of onset as between 2 & 80’
· ‘there is no medication or cure’
· ‘there was something about marrying someone with HD that upset me’

Participants were asked to recommend particular websites. The general theme was that American sites were more plentiful, interactive and informative. Most felt that it was appropriate that health professionals should recommend particular sites.

The main themes to emerge from this study as defined by the participants were Internet access and skills and reliability. Patients considered the issues of Internet access and reliability of information important. Access is seen as not only getting onto a computer with the Internet, but also having the necessary skills to ‘surf the web and find informative sites.

The point is made that not everyone has access to a computer and that access should be made easier for patients and their carers. Reliability of information I found appears to be very important to the participants. They expressed concern that what they read was factually correct and current. There is an impression that health professionals have a responsibility to guide their patients to safe information.

This study has shown that in this small sample Internet use among patients and their families is widespread. The variety of HD sites accessed by families was interesting, with American sites being reported as best. However, actually finding these sites was seen by some as a problem. It may be that merely providing a website address is not enough and that more general advice on finding the site is required. Once on the Internet most participants wanted to find out more about HD and possible treatments and cures for the condition. Although most participants had not found Internet information that conflicted with what their doctor had told them, a small percentage had and this must alert health professionals. Much store appears to be placed on information supplied by the professionals. What has yet to be established is how the health professionals assess the quality of the information themselves. Much work appears to be needed to give health professionals the skills to evaluate Internet information in the same way, as they would approach other medical literature.

The general impression gained from this study was that using the Internet was a satisfying and empowering experience. Conflicting evidence exists as to whether using the Internet represents a potential risk to patients. This study found that most participants were not distressed. While this is reassuring it would be important for health professionals to be aware of the possible dangers particularly with vulnerable patient groups. The word ‘health warning’ may sound paternalistic, but it may be important for patients to be aware that Internet information is not subject to any regulation. It may be that health care professionals should take a lead by demanding higher standards in this area.

By searching the Internet patients may be acquiring information that is both correct and incorrect and not discussed with their doctor. The impact of this information on the practice of clinical genetics is not known and merits additional studies. Further work is also needed to establish if use of the Internet affects patient decision making and what impact it has on their relationship with the medical profession. The apparent reluctance on the part of some doctors and nurses to integrate Web-based information into clinical practice may reflect a lack of skill among the professionals to assess websites for appropriate content. What we do know is that families are going to continue to access information this way and health care professionals need to be aware of this trend. No book or Internet site can replace a good consultation with an informed professional, but it can assist patients to get the most out of the meeting. There is clear evidence that patients who are informed and involved in decisions about their health do better. The impact of the Internet on clinical genetics has not been fully realised, and the response of the profession to this remains to be seen and evaluated.

Ann Kershaw M.St, BA,RGN

Huntington’s Disease Association (England & Wales) Newsletter, Issue 64, March 2004

Contact, Victorian HD Newsletter, Number 28, August/September 2005

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