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Characteristics of patients attending rapid access clinics during the West of Scotland Cancer Awareness Programme oral cancer campaign

Key Points

  • This was an evaluation of the first high profile public awareness campaign in the West of Scotland.

  • This paper focuses on the public's awareness of oral cancer, which is known to be very low.

  • The paper evaluates patients presenting to rapid access clinics of secondary care units with suspicious lesions.

Abstract

Aim In 2003, the West of Scotland Cancer Awareness Programme (WoSCAP) launched their oral cancer campaign to raise public awareness of the disease in five NHS boards across the West of Scotland. The aim of this study was to evaluate the campaign by reviewing patients attending rapid access clinics in the 11 secondary care units across the five boards.

Design Data were collected in 2004 during the second phase of the campaign via a two part self-completing questionnaire; the first part collected information from the patients and the second part from the clinicians, in rapid access clinics in the secondary care units.

Results In total, 580 questionnaires were given out in the clinics with 538 completed patient sections (response rate 93%) and 500 completed clinician sections (response rate of 86%). More than two thirds of rapid access secondary care patients had seen a recent health campaign related to mouth cancer, and 46% responded that the campaign had encouraged them to seek advice more quickly. Of the patients examined in the clinics, 5% had a provisional diagnosis of a malignant lesion, 7% a potentially malignant lesion, and the majority of lesions were benign. The clinicians deemed 30% of the referrals to be inappropriate.

Conclusions The results show a high percentage of patients attending rapid access clinics were aware of the campaign. However, there were a disproportionate number of inappropriate referrals to the rapid access clinics compared to genuinely urgent cases.

Introduction

In the United Kingdom there are around 3,500 cases of oral cancer per year.1 Incidence rates have been increasing in recent years across the UK, with Scotland having significantly higher rates than the rest of the UK.1,2

It is understood that early oral cancer cases have a better prognosis than those with advanced disease.3,4,5,6 Local lymphatic spread is the strongest prognostic indicator in oral cancer, and small tumours with no evidence of lymphatic involvement or metastatic spread are likely to have a better outcome.7 As the oral cavity is an easily accessible site for examination, the whole primary health care team are recognised as having a potential role in early detection of oral cancer.8

Increasing awareness of the disease among the general public should draw attention to the disease and encourage more people to attend practices for an oral examination. The use of health promotion is pivotal to raise the public's knowledge and awareness about oral cancer prevention and early detection.9

The West of Scotland Cancer Awareness Programme (WoSCAP) was set up in 2002 to improve general awareness of two selected cancers. After a period of consultation with professional groups and the general public, the two cancers chosen were oral and colo-rectal cancer. Oral cancer was selected, in part, due to the very low level of awareness of the disease among the population. Only 6% of the 1,000 people surveyed spontaneously listed oral or mouth cancer as a possible cancer.10

The purpose of the campaign was to raise awareness of the signs and symptoms of oral cancer amongst those living in the West of Scotland, and to encourage individuals to go to a primary health care professional if they had any concerns regarding possible signs of oral cancer. The target population was males and females over the age of 45. The campaign's slogan was 'If in doubt, get it checked out'.

The team initially provided training for primary care medical and dental practitioners and community pharmacists in the West of Scotland and liaised with secondary care clinicians in an attempt to ensure that referral systems and secondary care facilities would be able to cope with any increase in workload that may result from the programme. The public campaign was launched in October 2003 and ran in two phases, the first from October until December 2003, and the second from February until March 2004. Specially developed television and radio advertisements were broadcast during both of these time periods. Additionally, campaign leaflets and posters were sent to general medical and dental practices and community pharmacies.

The main aim of this study was to evaluate the WoSCAP oral cancer campaign, from the perspective of a review of patients attending, on an urgent basis, oral and maxillofacial surgery, plastics and oral medicine clinics in hospitals across the five National Health Service (NHS) boards participating in the WoSCAP campaign.

Methods

A questionnaire was developed in two parts; the first for completion by patients rapidly accessing oral medicine, oral and maxillofacial and plastic surgery clinics in hospitals across the five NHS boards involved in the campaign, and the second section for completion by the clinician examining the patient. In the 11 units involved in the campaign, the clinics were run in a slightly different manner. Only one unit, Glasgow Dental Hospital, had a dedicated rapid access clinic three times a week, for urgent referrals. All the other clinics had specific measures in place for appointing urgent cases more quickly, for example, dedicated telephone lines or fax machines solely for the use of practitioners referring such cases. The clinicians then arranged to see these patients at short notice. Other clinics set time aside during their routine clinics to see urgently referred cases.

The data were collected during the second phase of the public campaign, from 9 February to 2 April 2004. The inclusion criterion for patients was being referred into a clinic more quickly than a routine referral as a result of a suspicious lesion being indicated by the referring practitioner. All urgently referred patients were accepted by the clinics.

Information was collected from patients on the following topics: reason for attendance, duration of presenting complaint, referring practitioner, and whether or not the patients had heard of any public campaigns relating to the mouth (if so, further details were sought). After the patient had completed the first part of the questionnaire they were asked to return it to the clinic staff, who completed the second part of the form at the end of the patient's consultation. The topics covered in this part of the questionnaire were: hospital clinic, patient's age and sex, waiting time, presenting symptom, provisional diagnosis, and action planned for the patient.

The provisional diagnoses recorded were later categorised into three groups: benign, potentially malignant and malignant. The Consultants in Oral Medicine at Glasgow Dental Hospital compiled the lists of lesions for each category.

The questionnaire was developed in conjunction with the members of the WoSCAP team, the consultants in all the units involved in the campaign and the research team. It was based on a questionnaire used in one of the study units during the first phase of the public campaign.

Each of the units was visited by the study researcher (JR) or a member of the WoSCAP team at least once during the collection period to discuss any problems, collect completed questionnaires and distribute more copies if required. The questionnaire data were entered into an EXCEL spreadsheet. This was then imported into SPSS to allow descriptive analysis to be performed.

After analysis on the data was performed, the questionnaires that had a provisional diagnosis of a potentially malignant or malignant lesion were identified, and the study researcher re-visited the units in order to obtain the definitive diagnosis for these particular patients from their clinical records. Potentially malignant lesions were clinically: leukoplakias, erythroplakias and speckled leukoplakias with any level of dysplasia present histologically.

Results

In total, 580 questionnaires were distributed in the participating clinics during the study period. However, only 538 patients completed the first section (response rate 93%) and the second part of the questionnaire was completed in 500 cases by the clinicians (response rate 86%). A total of 492 forms were completed by both patient and clinician, representing a response rate of 84%.

The hospital units attended by the patients and the catchment area of the units are shown in Table 1. In addition to the 11 main units involved in the campaign, some patients were seen in satellite centres where participating consultants held infrequent clinics.

Table 1 Hospital units attended by patients (n = 500)

The ages of the patients are categorised in Table 2, with 45% male and 55% female. Table 3 indicates the patients' presenting complaints. The most frequent responses were 'mouth ulcer', 'lump in neck', 'intra-oral lump' and 'patch in mouth'.

Table 2 Age of patients attending the clinics (n = 500)
Table 3 Presenting complaint of patient (n = 500)

Just under one third of patients (31%) reported they had their complaint for three to six months, with 20% having been aware of a problem for over one year (Table 4). A small percentage (7%) reported that they had only had their complaint for one to three weeks, and 7% of patients had not been aware of any problem.

Table 4 Patients' reported duration of complaint for whole sample (n = 538) and those with definitive malignant diagnosis (n = 22)

Concerning their complaint, almost twice as many patients first consulted their doctor (59%) compared to their dentist (29%). Other options of 'pharmacist', 'self-referral' and 'other' made up only 3% of the replies.

Overall, 343 (64%) of the 538 patients surveyed indicated that they had seen or heard of a mouth cancer campaign during the past six months. Of these 343 patients, 314 (92%) reported seeing this on television and 24 (7%) had heard a radio broadcast. Therefore, of the 538 patients surveyed, 58% had seen the television advertisement and 5% heard the radio broadcast relating to mouth cancer. Overall, 46% of patients indicated that the publicity had encouraged them to seek advice more quickly. For those aware of the campaign, the proportion increased to almost 70%.

Of the 500 cases for which the clinicians' section of the form was completed, 38% of the urgent referrals were considered appropriate and 30% inappropriate. In 32% of cases the clinicians found the appropriateness of referral difficult to judge. Of those indicating they had first sought advice from a GDP, 38% of cases were considered inappropriate rapid referrals, with the corresponding percentage for those first attending a GMP being 28%.

The clinicians were asked to give a provisional diagnosis at the end of the patient visit. This was an open question where the clinicians were invited to write free text. Of the 500 questionnaires returned by the clinicians, 461 (92%) contained a provisional diagnosis. For 25 cases (5% of patients seen), a provisional diagnosis of a malignant lesion was made and 35 patients (7%) had a provisional diagnosis of a potentially malignant lesion. The majority of patients seen (401 patients, 80%) had a provisional diagnosis of a benign lesion, with the most common conditions being traumatic ulceration, keratosis, hyperplasia, mucocoele, and reticular lichen planus or lichenoid reaction.

Of the 23 patients with a provisional malignant diagnosis for whom gender was recorded, 70% were male and 30% female. The corresponding figures for patients with a provisional potentially malignant diagnosis were 44% and 56%, respectively. The ages of the patients in these diagnostic categories are shown in Table 5, with the majority being over 45 years.

Table 5 Age of patients with provisional diagnoses of malignant (n = 25) and potentially malignant (n = 35) lesions

Almost all (23/25; 92%) of the patients with a provisional malignant diagnosis reported they had first attended their doctor for advice, with the other two patients not having responded to the question. Similarly, of the 35 patients with a provisional potentially malignant diagnosis, 24 (69%) had first attended their doctor for advice, and only seven (20%) had first attended a dentist.

The clinicians were asked to record the action planned for the patient following examination. Over 25% of the patients were discharged after their initial visit to the clinic, whilst 13% had a lesion biopsied. A further 52% warranted a review appointment and 2% were referred to another clinician. This question was not answered by 7% of clinicians.

The study researcher re-visited the units after the study and obtained the definitive diagnoses for the patients with diagnoses of potentially malignant and malignant lesions. Of the 25 patients with a provisional malignant diagnosis, 20 had a definitive diagnosis of a malignant lesion and the other five patients had a definitive diagnosis of a benign lesion. Of the 35 patients with a provisional potentially malignant diagnosis, two had a definitive diagnosis of a malignant lesion, 15 had a definitive diagnosis of a potentially malignant lesion and the other 18 patients had a definitive diagnosis of a benign lesion.

Of the 22 patients with a definitive malignant diagnosis, 17 (77%) were male and five (23%) were female. Only two (9%) patients were under the age of 45 years. Fifteen of the 22 patients (68%) had been aware of the problem for less than one year and five patients (23%) reported having their problem for more than one year (with two patients not being aware of any problems, shown in Table 4). Twelve patients (55%) had heard of a recent mouth cancer campaign and, of these patients, seven (58%) said that the publicity encouraged them to seek advice more quickly.

Discussion

This investigation comprised a descriptive cross-sectional study of those patients accessing, on an urgent basis, consultant clinics held in the oral and maxillofacial surgery, oral medicine and plastic surgery units across the West of Scotland during the second phase of the WoSCAP campaign. All such clinics in the five NHS board areas participated and, in each, the pre-existing method to see urgent cases on a rapid basis was used during the study period.

Although a recent study11 has reported a dramatic increase in oral cancer incidence for younger males in Scotland, Conway and co-workers1 have shown that the increase seen in young people is not significantly different to that of older populations. Additionally, they report that the disease is still relatively rare in those aged under 45 years. For these reasons, the decision was made to target the mass media programme to adults over the age of 45 years. Nearly two thirds of the study patients fell into this age category and 91% of the patients with a definitive malignant diagnosis were over the age of 45, suggesting that the majority of patients seen in the rapid clinics and the majority of definitive malignant diagnoses fell into the target group. There were more females than males, which is slightly concerning given that the incidence in males is nearly double that in females. The pattern of attendance may reflect the tendency for women to access health care more readily.12

The socio-economic status of the patients was not collected as preliminary discussions revealed that recording postcodes at the level of sectors (necessary for determination of deprivation category) could actually identify some specific addresses in some of the sparsely populated areas. The lack of ability to collect postcode information was disappointing given the accepted relationship between socio-economic status and oral cancer incidence. Mass media campaigns are likely to generate unnecessary attendance of the 'worried well', possibly from the more affluent groups, and the attendance of patients from the lower social classes, who are at increased risk of the disease, may have been lower.

One of the main aims of the WoSCAP oral cancer campaign was to encourage anyone who was aware of a lesion in their mouth to seek health care advice as quickly as possible. The advice in the campaign material was to seek advice for any lesion that was present for longer than three weeks. In the present study, 60% of the patients attending on an urgent basis had been aware of their complaint for over six months, with 31% having had their problem for between three and six months. Of the patients with a definitive diagnosis of malignant disease, 32% had been aware of their problem for three to six months and a further 23% for over one year, ie much longer than the recommended timescale before seeking advice. Additionally, there is the possibility that such lesions had been present for longer without the patient's knowledge, or that the patient had under-estimated the time scale. As this was the first high profile campaign on this topic in the West of Scotland in recent times, the wide variation in duration of awareness of complaint was to be expected. Over time, however, it would be hoped that patients would present at an earlier stage to primary health care professionals.

When asked where they first went to seek advice, the findings showed that over twice the number of patients first consulted their doctor compared to their dentist. This was interesting as the television and radio broadcasts had deliberately mentioned the dentist first in the list of possible routes for advice, as it was felt that dentists already carried out an examination of the oral soft tissues as part of normal practice. However, it is possible that many people, especially from the at-risk group, associate dentists only with teeth and therefore take any worries concerning the soft tissues of the mouth, and cancer in particular, to their medical practitioner. Additionally, many patients may not have a general dental practitioner or may be more inclined to visit their doctor for financial reasons, although some of the target group are likely to be exempt from dental patient charges. Fear of the dentist may also have been a factor for some patients.13 These results agree with results from the pre-testing focus groups carried out by the WoSCAP team, where almost all the public surveyed said they would go to their doctor if they suspected mouth cancer.

It is also possible that many patients did in fact visit their dentist with a worrying lesion, but the dentists were able to act as gate keepers and knew that referral to a secondary centre was not required. As reported in a previous paper,14 40% of dentists in the area reported that both registered and non-registered patients had asked for advice regarding a worrying lesion, during the campaign period.

For the 343 patients who were aware of the mouth cancer campaign, the television advertisement was much more successful than the radio broadcast in reaching the patient group. The television slots were scheduled to coincide with the peak viewing times of the target group, and formed the major component of the awareness-raising campaign. Therefore, it was to be expected that there would be a higher level of awareness of the television broadcasts. However, the percentage awareness of the radio advertisements is somewhat disappointing and the findings suggest that careful consideration of benefit of the inclusion of this element would be required in the planning of any future campaign of this type.

Over half of the patients with definitive diagnosis of a malignant lesion reported that they had been aware of a mouth cancer campaign and of those, 58% indicated that the publicity had made them seek advice more quickly. This would suggest that the campaign had some impact regarding its key message.

Only 38% of the referrals from a primary care practitioner were considered by the hospital clinicians to be appropriate rapid referrals. Although this is a low result, it is perhaps not a surprising figure for a public campaign when awareness is raised and affects a proportion of the worried well. The pre-public campaign training sessions for primary care practitioners were attended by over 1,200 individuals and had attempted to address appropriateness of referrals to a secondary centre. However, the consultants from all sites had reassured the attendees at the training that they would rather see patients than miss a worrying lesion. This may, in part, have influenced referrals.

Participating clinicians reported observing a change in referral patterns, particularly from dental practitioners. For example, prior to the campaign, dental practitioners suspecting oral lichen planus would refer such cases by a standard letter often labelled 'routine'. In the wake of the campaign, however, similar cases were referred urgently. This change may have been due to lichen planus being characterised as a 'white lesion' and also potentially malignant. In raising public awareness, the campaign may also have increased pressure on primary care practitioners to refer onwards. There is also the possibility that the primary care clinicians took advantage of the campaign and the pathways for rapid referrals in order for their patient to be seen more quickly. To this end, an information sheet on the categories of patients who need a rapid referral and those who do not was sent to every primary care clinician prior to implementation of the third public phase of the campaign.

Conclusion

The information from the patients completing the rapid access questionnaire highlighted that many of those attending the clinics more rapidly than normal during the time of the campaign were in the targeted age group, and there were more females than males. There was a good level of awareness of the campaign, and while the patients referred rapidly to the secondary care centres included referrals for expected types of lesions, there was also a high proportion of benign and non-urgent lesions.

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Acknowledgements

We thank the patients and clinicians for participating in this study and acknowledge the support from the West of Scotland Cancer Awareness Programme team.

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Correspondence to J. Rodgers.

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Rodgers, J., Macpherson, L., Smith, G. et al. Characteristics of patients attending rapid access clinics during the West of Scotland Cancer Awareness Programme oral cancer campaign. Br Dent J 202, E28 (2007). https://doi.org/10.1038/bdj.2007.342

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