Psoriasis: the role of the genetic research nurse
VOL: 97, ISSUE: 18, PAGE NO: 37
Lucy Ronda, BA, RGN, is clinical research nurse, skin therapy research unit, St John's Institute of Dermatology, St Thomas's Hospital, LondonPsoriasis is a chronic, non-infectious skin disease that commonly presents as well-demarcated, reddish plaques topped by silver scales, which are produced by an increase in the rate of proliferation of epidermal cells. It varies in severity from mild to life-threatening.
The genetic component of psoriasis has been recognised for many years. The National Psoriasis Foundation estimates that one in three people with psoriasis has a family member with the disease. Recent scientific advances have provided the means to search for particular genes. One such project, aimed at identifying the genes involved in psoriasis, is based at St John's Institute of Dermatology at St Thomas's Hospital, London, and the department of medical genetics at the University of Leicester. To date more than 700 people have participated, including family members of those with the condition. A number of other dermatology departments have helped the project by supplying willing participants. The project has a multidisciplinary team consisting of doctors, geneticists, scientists and myself. Once an assessment of a participant's condition has been made, blood samples are taken and detailed personal and family histories obtained. The blood is analysed using a variety of techniques that examine the components of the subject's DNA, the helical structure that carries each person's genetic code. The scientists are searching for genetic 'markers', which are small amounts of DNA associated with the genes involved in a particular condition or characteristic. These act as landmarks on the genetic map, are situated close to the relevant gene(s) and can be traced in family members to identify which of them is predisposed to psoriasis. Early results indicate that several genes are responsible for psoriasis, so the project will probably take a long time to complete (National Psoriasis Foundation website). The project's progress may also be affected by genetic research being carried out in other areas. Advances in genetic techniques and knowledge have accelerated the work of this particular project. One example is the human genome project, which completed the first draft of the human genetic map last year. The nurse's role
The expansion in nurses' roles over the past few years has led to a dramatic increase in the number of nurses involved in all types of research. One study has shown that the nurse is an integral member of the research team: his or her presence enhances patient participation and increases patient satisfaction (Adams, 1994). The research nurse is often the only member of the team to meet participants so the patient's experience of the research is significantly influenced by the nurse. One of the most important aspects of the nurse's role is communicating with participants and family members. The time spent taking histories and blood samples provides an ideal opportunity to use nursing and counselling skills to help volunteers understand the aims and nature of the research (Averill, 1995). Participants may be unsure of what to expect or what is expected of them. Their improved understanding encourages them to cooperate fully with the requirements of the project. Some people feel intimidated by the clinical environment and the research nurse is able to offer reassurance and make the experience less impersonal. During the research consultation, participants often seek general advice about their condition or that of a family member. In today's NHS there are few chances for such discussions with health professionals and this opportunity enhances the experience of research for all those involved. The greatest contribution the research nurse makes is providing psychological support to participants. Genetics is a subject that is often manipulated by the media and people may have preconceived ideas that act as a barrier to their comprehension of what the project is about and what their participation involves. For example, people often have worries about what the 'test will show'. It is necessary to explain that individual results are never given to participants because they are meaningless in isolation. Participants and their families are welcome to contact the nurse at any point in the future for help and advice where applicable. Many participants were not aware of the genetic link to psoriasis until they were asked to join the project and in some cases, particularly where children were affected but the carrier parent was not, feelings of guilt arose. The nurse plays a crucial role in allaying these feelings. Other consequences of participation have included some patients finding out that they were adopted or that they did not have the same father as their siblings. Because people now tend to live more independent lives from their families than at any other point in history - geographically as well as emotionally - persuading family members to participate, once they have been located, can sometimes be difficult. Sensitivity and diplomacy are required at all times, as it is impossible to be aware of all underlying interpersonal situations. Conclusion
The nurse has a pivotal role in the psoriasis genetics project and is ideally placed to act as an advocate for those volunteering, offer advice and explain the project from an impartial stance. The nurse's unique skills enable her to act as the translator between laboratory and participants. Anecdotal feedback from participants has been positive: many feel they have benefited from the knowledge they have gained by taking part in the study and have gone on to help the unit in other ways, such as by participating in clinical trials for psoriasis treatments.