Family Practice Vol. 18, No. 5, 475-486
© Oxford University Press 2001
Genetics |
New developments in genetics—knowledge, attitudes and information needs of practice nurses
CRC Primary Care Education Research Group, University of Oxford,
a General Practice and Primary Care Research Unit, University of Cambridge,
b School of Community Health Sciences, University of Nottingham and
c Department of Public Health Sciences, University of Edinburgh, UK.
Clare Bankhead, CRC Primary Care Education Research Group, Department of Primary Health Care, University of Oxford, Institute of Health Sciences, Old Road, Headington, Oxford OX3 7LF, UK.
Bankhead C, Emery J, Qureshi N, Campbell H, Austoker J and Watson E. New developments in genetics—knowledge, attitudes and information needs of practice nurses. Family Practice 2001; 18: 475–486.
Received 15 November 2000; Accepted 4 May 2001.
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Abstract |
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Background. In response to increased referrals to geneticists and the predicted patient demand for genetic counselling, it has been proposed that some genetics services should be provided in primary care. Practice nurses are ideally placed to collect family history information and advise patients accordingly in new patient, family planning, well women/men and chronic disease clinics, but little is known about their knowledge, skills and attitudes towards providing genetic advice.
Objectives. The survey aimed to measure the current situation with regard to: the prevalence of family history recording by practice nurses; confidence in collecting and acting upon family history; and practice nurses' knowledge about familial disorders and genetics. It also investigated what practice nurses think their role should be in relation to the delivery of genetic services; their educational needs; and the most appropriate ways of delivering training/support.
Methods. A postal questionnaire survey was carried out of all practices nurses (n = 909) in four Health Authorities in England (Oxfordshire, Northamptonshire, Nottingham and North Nottinghamshire) and one Health Board in Scotland (Lothian). Analyses were primarily descriptive.
Results. A total of 600 nurses (response rate = 66.0%) returned a completed questionnaire. Ninety-six per cent of practice nurses reported that they routinely collect family history information. Over half of the respondents had been consulted in the previous 3 months by patients with a worry about family history of cancer. Approximately 60% of nurses felt confident about collecting the relevant details regarding a family history of breast cancer but felt less confident in collecting the information regarding familial colorectal cancer. Nurses were also unsure how to proceed, with over a third of nurses referring patients to the GP even if they thought the patient was at population risk or, conversely, not referring those that they thought were at considerably higher risk to the GP. There was a reported need for education about familial disease in general and overall agreement that nurses could play a role in genetics in primary care.
Conclusion. This study provides evidence of considerable activity from practice nurses regarding routine collection of family history. There is a need for further education for practice nurses regarding family history information and the new genetics so that this information is managed appropriately.
Keywords. Family practice, medical genetics, nursing, primary health care.
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Introduction |
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Many advances have been made in genetic medicine, and this has led to an increase in demand for specialist genetic services,1,2 which are struggling to cope with the demand.3 Therefore, it has been suggested that some genetics services should be provided in primary care.3,4
Family history is an important risk factor for several common diseases and can be a useful indicator of whether a patient may benefit from additional screening for certain conditions, such as breast or colorectal cancer.5,6 Therefore, an important role for primary care practitioners is to be able to obtain a family history relating to a certain condition and be able to interpret it.
A qualitative study of GPs' views of their role in the ‘new genetics’, conducted in Oxfordshire and Nottingham, found that GPs accepted their role as gatekeepers and agreed that it was their responsibility to refer patients appropriately to specialist clinics on the basis of family history.7 The perceived role of GPs in Scotland was very similar to that found in Oxfordshire and Nottingham in that they felt that family history collection was their role, but again they lacked confidence to undertake the task.8 In a separate survey of English GPs, 63% reported that they would be willing to take family histories, if given the appropriate training. However, the remaining 36% were not prepared to collect family history information following suitable training, and reported a lack of time as a major reason.9 In line with the general expansion of the nurses' role in primary care,10 GPs have proposed that practice nurses could play an important role in providing genetic services in primary care, specifically by collecting routine (and opportunistic) information regarding family history.7 Practice nurses could share in the delivery of genetic care as they are ideally placed to collect family history information in new patient, family planning, well women/men and chronic disease clinics. However, to our knowledge, there are no studies that specifically have addressed the role of the nurse in the delivery of primary care genetic services.11
Aims and objectives
The survey aimed to measure the current situation with regard to: the prevalence of family history recording by primary care nurses; confidence in collecting and acting upon family history; and practice nurses' knowledge about familial disorders and genetics, using case scenarios. It also investigated what practice nurses think their role should be in relation to the delivery of genetic services; the educational needs of nurses; and the most appropriate ways of delivering training/support.
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Methods |
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A cross-sectional questionnaire survey was conducted of all practices nurses in four Health Authorities in England (Oxfordshire, Northamptonshire, Nottingham and North Nottingham) and one Health Board in Scotland (Lothian).
Sample selection
Lists of practice nurses were obtained directly from the Nurse Directors in each health authority where possible, and by contacting all GP practices if the data were not available from the health authority. All practice nurses in the four health regions (n = 909) were sent a questionnaire that was accompanied by a letter explaining the purpose of the study. The letter was co-signed by the local study co-ordinator in each area and a signatory that was known to the majority of nurses in that area (e.g. nurse director or nurse lecturer/practitioner). Two reminders were sent to non-responders in Oxfordshire, Northamptonshire and Nottinghamshire, and one reminder was sent in Lothian.
The questionnaire
The questionnaire was developed in collaboration with practice nurses and piloted in Warwickshire, Nottinghamshire and Edinburgh. The final questionnaire contained closed and open-ended questions and took less than 15 minutes to complete.
Confidence about collecting and acting upon family history was assessed in two general case scenarios, one regarding breast cancer and the other colorectal cancer. The wording provided was "If someone consulted you with worries about their family history of (breast/bowel) cancer, how confident would you feel regarding the following: knowing what is the relevant family history information to collect; making a basic risk assessment and deciding who should see their GP; reassuring those at low risk; and advising on breast awareness (for breast cancer scenario) and possible symptoms of bowel cancer (for colorectal cancer scenario)".
Knowledge about genetic conditions was assessed in the following ways. A list of seven cancers and three other conditions were given and nurses were asked to say whether family history was an important risk factor (yes/no/not sure). Two case scenarios were given of patients concerned about a family history of breast and bowel cancer. For these scenarios, the options provided were to assess whether the patient was at considerably higher risk than the general population or had a risk similar to the general population. In both of these scenarios, the outcome was that the patients' risk was similar to that of the general population. Respondents were then asked how they would manage this patient (closed question with option to specify other action). Open-ended questions of a further two case scenarios were given which aimed to elicit how the nurse would manage the patient. The coding of these questions is covered in more detail in the next section.
Data coding—open-ended questions
The following two scenarios were provided and the nurses had to describe, as free text, what they would ask, say or do.
- You see a 35-year-old male at a new patient registration appointment. He tells you that his father died of a myocardial infarction aged 45 and he is worried about his own risk.
- You see a woman aged 45 at a new patient registration appointment. She has a BMI of 29 and tells you that her mother developed diabetes at the age of 50.
Two experts in the field (see Acknowledgements) were asked what the ‘gold standard’ procedures were that should be undertaken in these two clinical situations. In addition to these, several actions that are not recommended were also highlighted. Using these suggestions, a coding scheme for the two vignettes was developed and refined to maximize inter-rater consistency. The resulting coding schedule for the patient with a family history of myocardial infarction had a maximum of seven ‘gold standard’ procedures (take full family history; ascertain smoking status; check blood pressure; 111routinely check lipid levels; calculate BMI; discuss increased risk; and advise reduction of risk) and two non-scoring, not necessary procedures (enquire about stress levels and falsely provide reassurance).
The coding schedule for the family history of the diabetes patient had five scoring actions: check fasting blood glucose; advise about weight reduction; take specific family history; advise about exercise; and discuss increased risk. Other non-scoring actions were: discuss symptoms of diabetes; incorrectly undertake urinalysis; check random glucose; and falsely provide reassurance.
The responses from the nurses were coded independently by two of the authors (CB and JE) and any disagreements were discussed to reach consensus. Total scores for each scenario were calculated.
Data analysis
Data was entered and a 10% sample was double entered. Data analysis was conducted using Stata version 612 and was primarily descriptive in nature.
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Results |
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Questionnaires were returned from 600 of the 909 nurses (response rate = 66.0%).
Collection of family history information
Ninety-six per cent of practice nurses reported that they collect family history information as a matter of routine [575/600, 95.8%, 95% confidence interval (CI) 93.9–97.3%]. The proportion of respondents that routinely obtain family history details in different clinics, and the proportion who collect family history information for specific conditions are shown in Table 1
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Table 1
shows that practice nurses frequently collect family history information. Of the nurses that routinely take information about family history, most activity occurs in new patient clinics; family history of ischaemic heart disease is the most commonly collected in all clinic settings. A free text section was provided for any other diseases for which familial predisposition is collected during routine practice. The most commonly cited conditions, in this section, were cerebrovascular disease (n = 172, 28.7%), hypertension (n = 104, 17.3%) and asthma (n = 85, 14.2%). Almost two-thirds of nurses (61.5%, 369/600) reported that at least one patient had consulted them in the previous 3 months with a concern about cancer in the family.
Confidence in collecting and acting upon family history
The responses to the confidence questions are shown in Table 2. Practice nurses were significantly more confident in all aspects of dealing with patients with concerns about familial breast cancer than those with concerns about colorectal cancer in the family. For example, 60.7% (95% CI 56.6–64.6%) of nurses were confident or very confident about collecting the relevant family history for breast cancer compared with only 25.5% (95% CI 22.0– 29.2%) of respondents who felt confident or very confident collecting information about familial bowel cancer (McNemars chi-squared = 184.9, df = 1, P <0.0001).
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Confidence levels in collecting the relevant family history were significantly higher for both breast and colorectal cancer in nurses who had attended a training session about genetic issues in the previous 12 months. For breast cancer, 72% (52/72) of nurses who had attended an educational session were confident or very confident compared with 59% (301/508) of nurses who had not attended an educational session (chi-squared = 4.45, df = 1, P = 0.04). The same significant pattern is observed for colorectal cancer, although the overall proportions reporting being confident were significantly lower, 39% (28/72) who had had an educational session compared with 23% (118/506) who had not had a training session (chi-squared = 8.09, df = 1, P = 0.004). For the other confidence variables, only providing reassurance for those at low risk of breast cancer was significantly associated with attending training.
Knowledge of familial disorders and genetics
Practice nurses' knowledge regarding the importance of family history in a range of conditions was good. Most knew that family history is an important risk factor for breast, ovarian and colorectal cancer, and chronic diseases (ischaemic heart disease, asthma and diabetes). They were less certain about the role of family history in determining the risk of lung and cervical cancer.
For the breast cancer and bowel cancer scenarios, the majority of nurses overestimated the risk of the patient, with 79.9% (469/587) of respondents estimating the risk of breast cancer to be considerably higher than the population level when, in fact, the risk was similar to the general population risk. Of the respondents, 89.5% (477/533) believed the patient with concerns about colorectal cancer was at considerably elevated risk, when their risk was also similar to that of the general population (Table 3). There were 67 respondents (11%) who did not complete the bowel cancer question, compared with 13 (2%) who did not complete the breast cancer question. This may be indicative of lower confidence or knowledge levels regarding the familial nature of colorectal cancer.
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Nurses were also unsure how to proceed: in the breast cancer example, over a third of respondents would not refer the patient to the GP even if they thought they were at considerably higher risk than that of the population. Conversely, over a third who thought the patient was at population risk would refer on to the GP and only 41% of these would reassure the patient about their level of risk (Table 3
). Correct risk assessment was associated with attending an educational session for breast cancer [31.9% (23/72) correct compared with 18.0% (90/501) correct if not attended a training session, chi-squared = 7.77, df = 1, P = 0.005], but not for bowel cancer [13.6% (9/66) compared with 9.9% (46/463), chi-squared = 0.85, df = 1, P = 0.40]. Referral decisions for both breast and bowel cancer scenarios were unrelated to receiving education about familial cancer.
Nurses generally handled the scenario of the patient with a family history of myocardial infarction well, with most indicating that they would take the appropriate action. They were less sure how to manage the overweight patient with a family history of diabetes (Table 4).
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The role of the practice nurse in the new genetics
This aspect was explored using an open-ended question, completed by 336 nurses (56% of responders). Many nurses reported their role as ‘first stop’ as patients did not want to bother the doctor with worries about cancer. The respondents also felt that they should be able to provide accurate information, complete a basic risk assessment and refer on to the GP if necessary, increase awareness about cancer and relevant symptoms and provide reassurance and lifestyle advice. However, many nurses noted that they felt that they needed more training and information to be able to fulfill this role "[our] role is very important as we have most opportunity to discuss/educate—but we first need education ourselves!".
Educational and training needs of practice nurses
At the time of this survey, only 12% of respondents had attended an educational session on family history during the previous 12 months. There was overwhelming support for further information or education, with 97.5% (585/600) reporting that it would be very useful or useful to them. The suggestion of lectures or workshops and written materials sent to the practice were both very popular (513 of the nurses would like to attend a lecture/ workshop and 317 would like written information sent to the practice).
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Discussion |
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This study provides evidence of considerable activity from practice nurses regarding the routine collection of family history. There is debate surrounding whether family histories should be collected routinely, or whether such activity constitutes screening and whether it should therefore meet the generally accepted criteria for a screening test.13 The evidence for interventions for people with a genetic risk of certain diseases such as breast cancer is not yet strong enough to support such proactive screening.14,15 Precisely how a family history of ischaemic heart disease should be used to assess risk is uncertain since none of the cardiovascular risk assessment tools include family history.16,17 However, this has been highlighted as a shortcoming of the risk assessment tools.18
Two studies have addressed the effect of systematic family history recording on psychological consequences. One study invited patients aged 20–34 to attend a special clinic in the general practice to discuss genetic issues. Anxiety was significantly reduced immediately after the consultation, but returned to initial levels after 12 weeks.19 The other study, which used a self-administered questionnaire to collect family histories, found that anxiety was significantly increased after completing the questionnaire, but anxiety levels decreased after 2 weeks following a second consultation.20
The family history is of course used in primary care for other reasons such as to aid diagnosis in the presence of specific symptoms and to assess a patient's psychosocial background.21 It is questionable, however, whether the considerable time and effort reported by practice nurses in this survey in routinely collecting family histories can be justified currently.
In the present study, >61% of the nurses reported that during a 3-month period, patients had mentioned concerns about family history of cancer. Although this figure may be prone to recall bias, it is in keeping with previous research on current levels of patient demand for information about familial risk of disease.11 Nurses feel that they are the first point of contact and they provide ‘permission’ for the patient to see the GP if concerns are well founded. In order to provide an accurate risk assessment and give reassurance or advice as appropriate, practice nurses feel that they need more information about familial conditions to be able to manage patients confidently. Regardless of whether or not family history should be collected routinely, the nurses in this survey frequently were in a position where a family history was obtained but currently felt that they were not sufficiently well informed to deal with the issue appropriately.
Unreported data from this survey showed that the majority of nurses reported using computer systems and computer templates to manage patient information and were confident in so doing. Computerized templates to collect family history information and provide decision support for management options could improve nurses' confidence and ability to manage patients' concerns about family history more appropriately. This approach has been shown to be successful with GPs,22 but there has been no such work to date with practice nurses.
It is evident that concerns regarding hereditary disease are often raised in practice and that there is a need for further training for practice nurses in this increasing area of awareness. How best to achieve this is debatable. A possible approach for existing qualified nurses would be to provide training to enable practice nurses to take detailed family history information that is then utilized by the GP to assess risk and make referral decisions. In this survey, there was demand for traditional types of education such as lectures or workshops, but these generally are ineffective methods of disseminating knowledge.23 Indeed, there was no association in this study between correct management of family histories of cancer and previous education on the subject. More innovative strategies, such as guidelines implemented through educational visits to the practice or computer decision support, may be required to bridge the knowledge gap and support primary care nurses to deliver high quality genetic advice. For the nurses of the future, this area of medicine could be included in the nursing curriculum. The importance of the role of practice nurses is summed up by one comment written on the questionnaire "Our role could be great if well informed. Similarly our role could be devastating if not."
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Appendix |
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The text of the Appendix is available in the PDF version of this document.
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Acknowledgments |
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We would like to thank all the practice nurses who took the time to complete the questionnaire and made this work possible. Thanks also to: Frankie Brown for her invaluable advice; Cheryl Armstrong, Amanda Butler and Jane Allen for co-ordinating the mailshots and data entry in Edinburgh and Nottingham; Andrew Neil (University Lecturer in Clinical Epidemiology, University of Oxford) and Simon Griffin (University Lecturer in the General Practice and Primary Care Research Unit, Department of Public Health and Primary Care, University of Cambridge) for devising the ‘gold standards’ for the detailed case scenarios; and Frankie Brown, John Hughes, Mary Porteous, Jacqui Carr and Carol Ainley for agreeing to be co-signatories on the covering letter accompanying the questionnaire. This work was funded by The Cancer Research Campaign, NHS Executive R&D Levy for Primary Care and the Chief Scientist Office, Scottish Executive.
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