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Reasons for delayed presentation in oral and oropharyngeal cancer: the patients perspective
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British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353
Reasons for delayed presentation in oral and oropharyngeal cancer: the patients perspective Simon N. Rogers a,b,∗ , Shreya V. Vedpathak c , Derek Lowe a,b a b c
Regional Maxillofacial Unit, University Hospital Aintree, Liverpool, UK Liverpool and Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University, St Helens Road, Ormskirk, UK Liverpool Dental School, University of Liverpool, Liverpool L69 3BX, UK
Accepted 18 June 2010 Available online 31 July 2010
Abstract Patients with oral and oropharyngeal cancer (OOC) often delay presenting to their doctor or dentist. The aims of this study were to ask a consecutive cohort following treatment for OOC about their initial symptoms and the time spent before presentation to the healthcare profession. Also to discover their views on how to reduce delays in presentation. From a 2-year cohort treated within 2 years, 71 completed a short survey and 44 were subsequently interviewed by telephone. A non-healing ulcer or sore was the commonest symptom patients first related to having cancer. Around half interpreted their symptoms as something minor, staying much the same initially, and something that probably would get better by itself. Most would have sought advice earlier if they had been more aware of oral cancer. Although many patients talked about their symptoms to spouse, partner, family or friends, over one-third said they spoke to nobody about it. Our sample did not find that access to a doctor or a dentist was a barrier to seeking advice. This study highlights that from the patients perception they generally thought their symptoms were trivial, would get better by themselves and gave little thought as to whether it might be cancer. Patients commented they knew nothing more about the disease. In their views the best way to get patients to self refer earlier was through improved awareness of the disease, as many felt there was a gross lack of knowledge in this field of cancers compared to other cancers. © 2010 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved. Keywords: Mouth neoplasms; Oral cancer; Cancer; Survey; Awareness
Introduction Around four out of every 10 patients with oral cancer present with advanced disease (stages 3 and 4).1,2 The majority of the delay is in the time taken for patient to present rather than professional delay.1,3–6 Late presentation is an important issue as advanced disease requires more radical treatment and is associated with poorer prognosis.2 Radical treatments are linked ∗ Corresponding author at: Regional Maxillofacial Unit, Aintree University Hospitals, NHS Foundation Trust, Aintree, Liverpool L9 7AL, UK. Tel.: +44 0151 529 5287; fax: +44 0151 529 5280. E-mail addresses: [email protected], [email protected] (S.N. Rogers), shreya [email protected] (S.V. Vedpathak).
to additional treatment burden, patient and carer distress and with worse health related quality of life outcomes.7 The management of advanced diseases also incurs extra health care costs. Previous research suggests that public awareness of oral cancer tends to be poor.8,9 In a street survey a non-healing mouth ulcer was recognised as a symptom of oral cancer by just over a third of the lay public. Of concern was that over one-tenth felt that this was not a symptom even when specifically asked.9 In 2006, Scott et al.10 conducted detailed interviews with 17 oral squamous cell carcinoma patients before treatment. In this small sample oral symptoms were rarely attributed to cancer and regarded mainly as minor oral conditions. Consequently, patients either delayed seeking help or were unconcerned about their symptoms. Before seek-
0266-4356/$ – see front matter © 2010 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved.
doi:10.1016/j.bjoms.2010.06.018
350
S.N. Rogers et al. / British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353
ing professional help they had used self-medication, changed the way they ate and had told family or friends about their symptoms. Social responsibilities and problems with access to healthcare professionals were seen as barriers to seeking help. The aims of this study were to ask a consecutive cohort of patients within 2 years following treatment for oral and oropharyngeal cancer about their initial symptoms and the time spent before their presentation to the healthcare profession. Also to discover their views on how to reduce delays in presentation. This data will allow a better understanding of the reasons that account for patients delay. This should support the development of measures that attempt to promote earlier presentation.
Method Patients treated in 2005 and 2006 for oral and oropharyngeal squamous cell carcinoma at the Regional Maxillofacial Unit, University Hospital Aintree were identified from the departmental oncology database. In order to help with memory recall of events prior to presentation, consecutive patients within 2 years of diagnosis were included. The survival status of eligible patients was checked using the departmental link with the Office of National Statistics (ONS) and hospital records. Patients known to be alive and disease-free were sent a short survey questionnaire asking who they first received advice from and who was the first healthcare professional they contacted. They were also asked to take part in a telephone interview and if willing to leave a contact number. Patients were asked to return the survey using a pre-paid envelope. Those not replying within 4 weeks were sent a postal reminder. For willing participants a mutually convenient time was agreed for the telephone interview, the interview procedure was explained and any queries were addressed. A consent form was then sent to these patients with a pre-paid return envelope. During the interview the researcher (SV) asked a range of closed and open questions. Interviews were taped to allow the researcher to interact more freely with patients, to help extract any data that might have been missed and to assess reliability. All tapes were secured in a locked cupboard and were destroyed within 6 weeks of interview. Briefly, patients were asked about the time they first discovered their symptoms, about the nature of their symptoms, about their beliefs regarding their symptoms and any obstacles they faced in seeking medical help. The researcher (SV) received training in conducting a telephone survey from the Evidence-based Practice Research Centre at Edge Hill University. Four pilot interviews were performed face-to-face in clinic and two further pilot telephone interviews were taped to ensure the feasibility of the questionnaire and to gauge the length of the interview. Minor adjustments were made at this stage.
Table 1 Response to survey and interview. % responding to survey
% responding to survey and interview
%
n
%
n
Age <55 55–74 75+
52 73 71
14/27 45/62 12/17
41 45 29
11/27 28/62 5/17
Sex Male Female
65 71
42/65 29/41
40 44
26/65 18/41
Year of treatment 2005 2006
50 77
20/40 51/66
33 47
13/40 31/66
Site Oral Pharyngeal Laryngeal
69 63 –
59/86 12/19 0/1
40 53 –
34/86 10/19 0/1
Clinical stage T1–T2 T3–T4
72 56
53/74 18/32
46 31
34/74 10/32
Clinical stage N0 N+
69 62
55/80 16/26
44 35
35/80 9/26
Treatment Primary surgery alone Primary surgery and RT Primary RT alonea
69 65 56
53/77 13/20 5/9
44 40 22
34/77 8/20 2/9
a
Including chemotherapy.
Ethical approval was received from the Sefton Research Ethics Committee.
Results A total of 159 new referrals in 2005 and 2006 were identified from the oncology database of whom 49 had either died or had recurrent disease and four were recruited for the pilot phase. Of the remaining 106 patients a questionnaire survey response was obtained from 71 patients of whom 44 were subsequently interviewed by telephone. Response to the survey and interview is summarised in Table 1. Survey response was lowest for younger patients (<55 years), for those in the 2005 cohort and for those with more advanced disease. The overall percentage being interviewed was lowest for the more elderly (75+ years) patients, for those in the 2005 cohort, for those with more advanced disease and for those with primary treatment not involving surgery. In the survey patients were asked who they first sought advice from and who was the first healthcare professional they contacted, both questions being open-ended. Patients responded that the first advice they received came either from family doctors (39%, n = 28), dentists (34%, n = 24) or family/friends (23%, n = 16) with three unknown. The first
S.N. Rogers et al. / British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353 Table 2 Initial symptoms (non-incidental n = 39). % YES
Patients
What was the VERY FIRST THING you noticed that you relate to having mouth/throat cancer Non-healing ulcer or sore 41 16 Persistent lump or swelling 13 5 White or red patch 8 3 Sore tongue or mouth 13 5 Toothache 3 1 Sore throat, abcess or boil 15 6 Neck swelling 3 1 Othera 5 2 More than one symptom
23
9
At the time did you feel your symptoms were caused by A minor condition 50 19/38 A potentially serious condition 13 5/38 Was not sure of the cause 37 14/38 Did you feel your symptoms Got better Stayed the same Got worse
– 71 29
0/38 27/38 11/38
Did you think it would get better by itself? Yes 51 No 36 Was not sure either way 13
20 14 5
Self-medication
31
12
Change in the way you ate? Not at all A little Quite a bit Very much
64 15 15 5
25 6 6 2
a
Hardening of part of tongue (1), lichen planus (1).
healthcare professional was either the family doctor (58%, n = 41), dentist (24%, n = 17), hospital (n = 7: A&E 2, Dental Hospital 3, MFU 2) or NHS Direct (n = 4) with two unknown. Interview results One-quarter (11/44) of those interviewed had known someone (family or friend) with head and neck cancer, the sites being described as throat (3), tongue (2), mouth (2), oral (1), larynx (1), oesophagus (1) and non-hodgkin’s lymphoma (1). Before being diagnosed 43% (19/44) had never heard of mouth and throat cancer. The diagnosis of cancer was incidental for five patients. Of the remaining 39 patients 41% (16) felt that a non-healing ulcer or sore was the very first symptom that they could relate to their cancer (Table 2). Persistent lumps or swellings (13%), sore tongue or mouth (13%) and sore throat, abcess or boil (15%) together made up another 41% of patients. One-quarter (9/39) said there was more than one symptom, which they described additionally as earache (3), lump (1), pain in jaw (1), rough and sore gums (1), ‘more blisters – used to pop and fill up and started choking at night’ (1), aching joints, lethargy and rapid weight loss (1), ‘felt sick randomly’ (1). At the time of having symptoms only 13% (5/38) thought
351
they were caused by a potentially serious condition. Most (71%, 27/38) felt that their symptom(s) stayed the same, with 29% (11/38) feeling that it got worse. Half (51%, 20/39) thought it would get better by itself. One-third (31%, 12) tried self-medications of Bonjela (6), cough mixture/syrup (2), Ambersol (1), Adcorty Orabase – dental hospital prescribed gel (1), medicated mouthwash and paracetomols to get rid of pain (1), with one unknown. About one-third (36%, 14/39) changed the way they ate. Patients were asked who they first spoke to about their symptoms they had noticed. For 41% (16/39) their spouse or partner (eight wife, five husband, two partner, one girlfriend) was the first person they spoke with, for 5% (2/39) it was immediate family (one son, one daughter) and for 15% (6/39) it was a friend (four friend, one ex-wife, one son’s girlfriend). However 38% (15/39) said they spoke to nobody about it. These conversations took place for 17% (4/24) immediately after noticing the symptoms, for another 38% (9/24) within a week and for 33% (8/24) within a month, with two patients saying more than a month later (‘2 months’ and ‘a few months’), unknown for one. The first healthcare professional was contacted by 19 within a week of symptoms, 10 between 1 week and 1 month, and 10 later than 1 month. Patients were asked which healthcare professional they first contacted. Most (62%, 24/39) saw a GP, 26% (10) a GDP, whilst three saw a hospital doctor or dentist (two dental hospital, one A&E), one saw a nurse and one either a doctor or dentist (patient could not remember). Patients were asked about what triggers made them seek health care professional advice (Table 3). Triggers were multiple and besides the general concern about symptoms the dominant triggers were anxiety and worry (49%), the need to resolve uncertainty (38%), to avoid problems getting worse (28%) and being advised to seek professional help by others close to them (21%). One in six patients (6/38) said that they had not been satisfied with advice received from health care professionals. About half (46%, 18/39) identified one or more barriers to seeking professional advice, though half of these (9/18) were at worst just a ‘little’ bit of a barrier. Four patients ‘very much’ indicated barriers (one from fear of what the symptoms might be, two from costs of a dental check-up and one from both of these) whilst five patients indicated a lesser but ‘quite a bit’ of a barrier (one too busy, one difficulty getting appointment with doctor, one costs of dental check-up, one fear of symptoms and difficulty getting appointment with doctor and one with travel difficulties and difficulty getting appointment with doctor). Specific barriers are shown in Table 4. Four patients said they had been to a chemist/pharmacist for advice in the 6 months before oral cancer was diagnosed. This concerned medications (1), mouthwashes (1) and repeat prescriptions (1) with one unknown. More generally 57% (25/44) said they ‘never’ seek advice from a chemist/pharmacist, 36% (16) said ‘occasionally’ and 7% (3) said ‘sometimes’. Eight patients (18%) said they had asked about mouth problems at some time in their lives.
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S.N. Rogers et al. / British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353
Table 3 Seeking advice from a healthcare professional (n = 39). % YES
Patients
What triggered you to seek healthcare professional advice? Symptoms – general 64 25 Need for pain relief 18 7 Desired earlier diagnosis because it would have been 28 11 a problem Anxious and worried about it 49 19 Wanted an explanation/resolve uncertainty 38 15 Advised by significant others 21 8 Another reason for visit (e.g. another issue to GP, 26 10 GDP check-up) Would you have sought advice earlier if you had been more aware of oral cancer and it’s symptoms Definitely yes 44 17 Yes 18 7 Not sure 8 3 No 18 7 Definitely no 13 5 Were you satisfied with the advice received from health care professionals? Definitely yes 66 25/38 Yes 18 7/38 No 8 3/38 Definitely no 8 3/38 The reasons given by the six patients not satisfied with advice received from health care professionals were Consultant aggressive, dismissed her and was abrupt, 1 everyone else she was happy with Dentist dismissed it and did not listen to patient’s 1 concern as patient had noticed poster in waiting room and was worried about it GP said come back in 1 week. Patient went back in 1 1 week. No change. Referred to ENT for biopsy, nothing detected. Told to comeback in 6 months. Pt went to see GDP who thought related to molar Not well informed about long-term 1 Unexplained lump was put down to routine finding 1 and was not noticed the 1st time Happy with GP and new dentist but not with staff at 1 hospital as it had led to 1–2 years delay in diagnosis
Patients suggested that strategies to raise awareness and early presentation should involve increase public awareness through media coverage (television advertisements and programmes, radio, newspaper and magazine columns) with the use of more drastic visual aids on posters and leaflets in dental, GP surgeries and pharmacies so people know what to
look out for. There should be improved Internet resources and an education strategy that more clearly involves schools. Also they felt that there needs to be an emphasis on regular dental or medical check ups, so that asymptomatic lesions and minor symptoms can be acted upon earlier. The lay public should be encouraged to self-examine their mouth whilst tooth brushing and to speak out about their symptoms as soon as they have even the slightest concern.
Discussion In this investigative study we aimed to explore patients’ views on their initial oral cancer symptoms and to gain an insight into their pre-diagnosis cancer journey. We also sought their views on how to get patients to present earlier. The response rate to the survey component of the study was 67% and of these 62% was interviewed. The clinical characteristic seemed to adequately reflect the patient group however it is recognised that patients with advance disease tended to be slightly under represented, as they were more likely to have recurrence or died by the time of the survey. Scott et al.10 carried out interviews prior to treatment when memory recall of events prior to presentation should have been excellent. We chose a 2-year cohort post-treatment as this gave a much larger sample. It is accepted that a cross-sectional study up to 2 years following diagnosis did limit the recall of exact dates of events in their cancer journey, however the study focused on reasons for delay rather than the precise timeline of events. From the interviews it was clear that patients were able to recall their initial symptoms, their reaction and response, and their first presentation to the healthcare professionals (general medical practitioner/general dental practitioner). A semi-structured telephone interview was used as a suitable method to collect data from a relatively large cohort and this approach allowed for considerably more detail than a patients self-completed questionnaire alone but of course lacked the depth of enquiry possible through open face-to-face interviews. The findings of this study support the findings of Scott et al.10 In our cohort a non-healing ulcer or sore was usually the very first thing the patient noted. As a common symptom1 it would be appropriate to highlight this in any awareness initiative. It is notable that the lay public do not necessarily relate
Table 4 Barriers to seeking advice from a healthcare professional (n = 39). Not at all
What were the barriers to you seeking advice? You were too busy Fear of what the symptoms might be Too far to travel/transport difficulties Difficulty getting appointment with doctor Difficulty getting appointment with dentista Cost of getting a dental check-up a
Not applicable for 16 of 39.
A little
%
n
90 90 87 87 87 86
35 35 34 33 20 19
% 8 3 10 5 – 9
Quite a bit
Very much
n
%
n
%
n
3 1 4 2 – 2
3 3 3 8 – 5
1 1 1 3 – 1
– 5 – – 13 –
– 2 – – 3 –
S.N. Rogers et al. / British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353
this symptom to oral cancer and as a trigger for advice regarding onward referral.9 Community Pharmacists and their staff can miss its potential significance.11 Other symptoms first noticed by patients were sore throat, sore tongue or mouth, and persistent lump or swelling. Although common symptoms their potential significance needs to be highlighted as around half of the patients surveyed interpreted their own symptoms as something minor, staying much the same initially, and something that probably would get better by itself. One-third tried self-medication and only a small proportion actually considered it to be potentially serious. As patients tend to view their symptoms as not serious, it is appropriate for oral cancer awareness initiatives to focus on the possibility of cancer as a cause and ‘if in doubt, get checked out’. Unlike Scott et al.10 there was little association in our survey with discomfort whilst eating. Therefore we would suggest that alteration in eating is not a clear screen question to help identify those patients most likely to have a symptom related to oral cancer. It would seem appropriate to target a health awareness message to the lay public as many patients talk about their symptoms to spouse, partner, family or friends. These individuals need to help prompt the patient to early presentation especially as the patients perception is that of a minor condition. The patients close contacts, through raised awareness, could reinforce the message of getting it checked out. However in recognising the importance of family and friends it has to be remembered that over a third said they spoke to nobody about it, thus it is essential to focus awareness on the high-risk patient themselves. The majority would have sought advice earlier if they had been more aware of oral cancer. Also although unresolved and unexplained symptoms largely triggered the patient to seek health care professional advice, in a quarter there was another reason and hence there is an opportunity for screening high-risk patients with symptoms. In contrast to Scott et al.,10 our sample generally did not find access to a doctor or a dentist as a barrier to seeking advice, nor did they find themselves too busy. This emphasises the issue that patients generally thought their symptoms were trivial, would get better by themselves and gave little thought as to it might be cancer. Patients commented they knew nothing more about the disease. In their views the best way to get patients to self refer earlier was through improved awareness of the disease, as many felt there was a gross lack of knowledge in this field of cancers compared to other cancers. It would potentially seem beneficial to attempt to screen high-risk patients and paying for dental check-up might be a detrimental affect. Although there are potential difficulties gaining access to dentists on an emergency basis12 and the cohort of oral cancer patients tend to be from poor socioeconomic backgrounds,1 in our study access to the dentist was not considered a major deterrent, rather it was lack of awareness. Of course there might a geographic difference with respect to access to NHS dental treatment and the cost of private care, hence the influence on the cost of check-up might vary across the country.
353
Although professional delay is less of a problem than patient delay,1 another aspect is that a few patients were not satisfied with the advice received from the health care professional. Some were given the incorrect initial diagnosis, leading the patients into a false sense of security. Although most were given a subsequent appointment in the near future following for example a course of antibiotics, the diagnosis was felt to have been delayed. Therefore in the mantra of oral cancer awareness it is essential to make sure that health care professionals have an appreciation of signs, symptoms and the urgent suspected head and neck cancer 2-week rapid referral process. Finally this study has allowed the patients themselves to put forward suggestions as to how to promote earlier presentation. Their emphasis was on raised awareness and their suggestions could be incorporated and evaluated in further research in to this field. Conflict of interest statement There is no financial and personal relationships with other people or organisations that could inappropriately influence (bias) this work. References 1. Rogers SN, Pabla R, McSorley A, Lowe D, Brown JS, Vaughan ED. An assessment of deprivation as a factor in the delay in presentation, diagnosis and treatment in patients with oral and oropharyngeal squamous cell carcinoma’. Oral Oncol 2007;43:648–55. 2. Rogers SN, Brown JS, Woolgar JA, Lowe D, Magennis P, Shaw RJ, et al. Survival following primary surgery for oral cancer. Oral Oncol 2009;45:201–11. 3. Allison P, Franco E, Black M, Feine J. The role of professional diagnostic delays in the prognosis of upper aerodigestive tract carcinoma. Oral Oncol 1998;34(2):147–53. 4. Amir Z, Kwan SY, Landes D, Feber T, Williams SA. Diagnostic delays in head and neck cancers. Eur J Cancer Care 1999;8(4):198–203. 5. Carvalho AL, Pintos J, Schlecht NF, Oliveira BV, Fava AS, Curado MP, et al. Predictive factors for diagnosis of advanced-stage squamous cell carcinoma of the head and neck. Arch Otolaryngol – Head Neck Surg 2002;128(3):313–8. 6. Hollows P, McAndrew PG, Perini MG. Delays in the referral and treatment of oral squamous cell carcinoma. Br Dent J 2000;188(5):262–5. 7. Rogers SN, Lowe D, Fisher SE, Brown JS, Vaughan ED. Health related quality of life and clinical function in patients treated by primary surgery for oral cancer. Br J Oral Maxillofac Surg 2002;40:11–8. 8. Horowitz AM, Canto MT, Child WL. Maryland adults’ perspectives on oral cancer prevention and early detection. J Am Dent Assoc 2002;133(8):1058–63. 9. Rogers SN, Hunter R, Lowe D. Awareness of Oral Cancer in the Mersey region. Br J Oral Maxillofac Surg; in press. 10. Scott SE, Grunfeld EA, McGurk M. Patient’s delay in oral cancer: a systematic review. Community Dent Oral Epidemiol 2006;34(5):337–43. Oct. 11. Rogers SN, Lowe D, Catleugh M, Edwards D. An oral cancer awareness intervention in community pharmacy. Br J Oral Maxillofac Surg 2009 [Epub ahead of print]PMID: 19959266. 12. Rogers SN, Glen P, Robinson A, Lowe D, Grievson B, Edwards D. A survey of General Dental Practitioners in Merseyside regarding urgent appointments and suspected cancer referrals. Prim Dent Care 2008;15(1):25–30.
British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353
Reasons for delayed presentation in oral and oropharyngeal cancer: the patients perspective Simon N. Rogers a,b,∗ , Shreya V. Vedpathak c , Derek Lowe a,b a b c
Regional Maxillofacial Unit, University Hospital Aintree, Liverpool, UK Liverpool and Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University, St Helens Road, Ormskirk, UK Liverpool Dental School, University of Liverpool, Liverpool L69 3BX, UK
Accepted 18 June 2010 Available online 31 July 2010
Abstract Patients with oral and oropharyngeal cancer (OOC) often delay presenting to their doctor or dentist. The aims of this study were to ask a consecutive cohort following treatment for OOC about their initial symptoms and the time spent before presentation to the healthcare profession. Also to discover their views on how to reduce delays in presentation. From a 2-year cohort treated within 2 years, 71 completed a short survey and 44 were subsequently interviewed by telephone. A non-healing ulcer or sore was the commonest symptom patients first related to having cancer. Around half interpreted their symptoms as something minor, staying much the same initially, and something that probably would get better by itself. Most would have sought advice earlier if they had been more aware of oral cancer. Although many patients talked about their symptoms to spouse, partner, family or friends, over one-third said they spoke to nobody about it. Our sample did not find that access to a doctor or a dentist was a barrier to seeking advice. This study highlights that from the patients perception they generally thought their symptoms were trivial, would get better by themselves and gave little thought as to whether it might be cancer. Patients commented they knew nothing more about the disease. In their views the best way to get patients to self refer earlier was through improved awareness of the disease, as many felt there was a gross lack of knowledge in this field of cancers compared to other cancers. © 2010 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved. Keywords: Mouth neoplasms; Oral cancer; Cancer; Survey; Awareness
Introduction Around four out of every 10 patients with oral cancer present with advanced disease (stages 3 and 4).1,2 The majority of the delay is in the time taken for patient to present rather than professional delay.1,3–6 Late presentation is an important issue as advanced disease requires more radical treatment and is associated with poorer prognosis.2 Radical treatments are linked ∗ Corresponding author at: Regional Maxillofacial Unit, Aintree University Hospitals, NHS Foundation Trust, Aintree, Liverpool L9 7AL, UK. Tel.: +44 0151 529 5287; fax: +44 0151 529 5280. E-mail addresses: [email protected], [email protected] (S.N. Rogers), shreya [email protected] (S.V. Vedpathak).
to additional treatment burden, patient and carer distress and with worse health related quality of life outcomes.7 The management of advanced diseases also incurs extra health care costs. Previous research suggests that public awareness of oral cancer tends to be poor.8,9 In a street survey a non-healing mouth ulcer was recognised as a symptom of oral cancer by just over a third of the lay public. Of concern was that over one-tenth felt that this was not a symptom even when specifically asked.9 In 2006, Scott et al.10 conducted detailed interviews with 17 oral squamous cell carcinoma patients before treatment. In this small sample oral symptoms were rarely attributed to cancer and regarded mainly as minor oral conditions. Consequently, patients either delayed seeking help or were unconcerned about their symptoms. Before seek-
0266-4356/$ – see front matter © 2010 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved.
doi:10.1016/j.bjoms.2010.06.018
350
S.N. Rogers et al. / British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353
ing professional help they had used self-medication, changed the way they ate and had told family or friends about their symptoms. Social responsibilities and problems with access to healthcare professionals were seen as barriers to seeking help. The aims of this study were to ask a consecutive cohort of patients within 2 years following treatment for oral and oropharyngeal cancer about their initial symptoms and the time spent before their presentation to the healthcare profession. Also to discover their views on how to reduce delays in presentation. This data will allow a better understanding of the reasons that account for patients delay. This should support the development of measures that attempt to promote earlier presentation.
Method Patients treated in 2005 and 2006 for oral and oropharyngeal squamous cell carcinoma at the Regional Maxillofacial Unit, University Hospital Aintree were identified from the departmental oncology database. In order to help with memory recall of events prior to presentation, consecutive patients within 2 years of diagnosis were included. The survival status of eligible patients was checked using the departmental link with the Office of National Statistics (ONS) and hospital records. Patients known to be alive and disease-free were sent a short survey questionnaire asking who they first received advice from and who was the first healthcare professional they contacted. They were also asked to take part in a telephone interview and if willing to leave a contact number. Patients were asked to return the survey using a pre-paid envelope. Those not replying within 4 weeks were sent a postal reminder. For willing participants a mutually convenient time was agreed for the telephone interview, the interview procedure was explained and any queries were addressed. A consent form was then sent to these patients with a pre-paid return envelope. During the interview the researcher (SV) asked a range of closed and open questions. Interviews were taped to allow the researcher to interact more freely with patients, to help extract any data that might have been missed and to assess reliability. All tapes were secured in a locked cupboard and were destroyed within 6 weeks of interview. Briefly, patients were asked about the time they first discovered their symptoms, about the nature of their symptoms, about their beliefs regarding their symptoms and any obstacles they faced in seeking medical help. The researcher (SV) received training in conducting a telephone survey from the Evidence-based Practice Research Centre at Edge Hill University. Four pilot interviews were performed face-to-face in clinic and two further pilot telephone interviews were taped to ensure the feasibility of the questionnaire and to gauge the length of the interview. Minor adjustments were made at this stage.
Table 1 Response to survey and interview. % responding to survey
% responding to survey and interview
%
n
%
n
Age <55 55–74 75+
52 73 71
14/27 45/62 12/17
41 45 29
11/27 28/62 5/17
Sex Male Female
65 71
42/65 29/41
40 44
26/65 18/41
Year of treatment 2005 2006
50 77
20/40 51/66
33 47
13/40 31/66
Site Oral Pharyngeal Laryngeal
69 63 –
59/86 12/19 0/1
40 53 –
34/86 10/19 0/1
Clinical stage T1–T2 T3–T4
72 56
53/74 18/32
46 31
34/74 10/32
Clinical stage N0 N+
69 62
55/80 16/26
44 35
35/80 9/26
Treatment Primary surgery alone Primary surgery and RT Primary RT alonea
69 65 56
53/77 13/20 5/9
44 40 22
34/77 8/20 2/9
a
Including chemotherapy.
Ethical approval was received from the Sefton Research Ethics Committee.
Results A total of 159 new referrals in 2005 and 2006 were identified from the oncology database of whom 49 had either died or had recurrent disease and four were recruited for the pilot phase. Of the remaining 106 patients a questionnaire survey response was obtained from 71 patients of whom 44 were subsequently interviewed by telephone. Response to the survey and interview is summarised in Table 1. Survey response was lowest for younger patients (<55 years), for those in the 2005 cohort and for those with more advanced disease. The overall percentage being interviewed was lowest for the more elderly (75+ years) patients, for those in the 2005 cohort, for those with more advanced disease and for those with primary treatment not involving surgery. In the survey patients were asked who they first sought advice from and who was the first healthcare professional they contacted, both questions being open-ended. Patients responded that the first advice they received came either from family doctors (39%, n = 28), dentists (34%, n = 24) or family/friends (23%, n = 16) with three unknown. The first
S.N. Rogers et al. / British Journal of Oral and Maxillofacial Surgery 49 (2011) 349–353 Table 2 Initial symptoms (non-incidental n = 39). % YES
Patients
What was the VERY FIRST THING you noticed that you relate to having mouth/throat cancer Non-healing ulcer or sore 41 16 Persistent lump or swelling 13 5 White or red patch 8 3 Sore tongue or mouth 13 5 Toothache 3 1 Sore throat, abcess or boil 15 6 Neck swelling 3 1 Othera 5 2 More than one symptom
23
9
At the time did you feel your symptoms were caused by A minor condition 50 19/38 A potentially serious condition 13 5/38 Was not sure of the cause 37 14/38 Did you feel your symptoms Got better Stayed the same Got worse
– 71 29
0/38 27/38 11/38
Did you think it would get better by itself? Yes 51 No 36 Was not sure either way 13
20 14 5
Self-medication
31
12
Change in the way you ate? Not at all A little Quite a bit Very much
64 15 15 5
25 6 6 2
a
Hardening of part of tongue (1), lichen planus (1).
healthcare professional was either the family doctor (58%, n = 41), dentist (24%, n = 17), hospital (n = 7: A&E 2, Dental Hospital 3, MFU 2) or NHS Direct (n = 4) with two unknown. Interview results One-quarter (11/44) of those interviewed had known someone (family or friend) with head and neck cancer, the sites being described as throat (3), tongue (2), mouth (2), oral (1), larynx (1), oesophagus (1) and non-hodgkin’s lymphoma (1). Before being diagnosed 43% (19/44) had never heard of mouth and throat cancer. The diagnosis of cancer was incidental for five patients. Of the remaining 39 patients 41% (16) felt that a non-healing ulcer or sore was the very first symptom that they could relate to their cancer (Table 2). Persistent lumps or swellings (13%), sore tongue or mouth (13%) and sore throat, abcess or boil (15%) together made up another 41% of patients. One-quarter (9/39) said there was more than one symptom, which they described additionally as earache (3), lump (1), pain in jaw (1), rough and sore gums (1), ‘more blisters – used to pop and fill up and started choking at night’ (1), aching joints, lethargy and rapid weight loss (1), ‘felt sick randomly’ (1). At the time of having symptoms only 13% (5/38) thought
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they were caused by a potentially serious condition. Most (71%, 27/38) felt that their symptom(s) stayed the same, with 29% (11/38) feeling that it got worse. Half (51%, 20/39) thought it would get better by itself. One-third (31%, 12) tried self-medications of Bonjela (6), cough mixture/syrup (2), Ambersol (1), Adcorty Orabase – dental hospital prescribed gel (1), medicated mouthwash and paracetomols to get rid of pain (1), with one unknown. About one-third (36%, 14/39) changed the way they ate. Patients were asked who they first spoke to about their symptoms they had noticed. For 41% (16/39) their spouse or partner (eight wife, five husband, two partner, one girlfriend) was the first person they spoke with, for 5% (2/39) it was immediate family (one son, one daughter) and for 15% (6/39) it was a friend (four friend, one ex-wife, one son’s girlfriend). However 38% (15/39) said they spoke to nobody about it. These conversations took place for 17% (4/24) immediately after noticing the symptoms, for another 38% (9/24) within a week and for 33% (8/24) within a month, with two patients saying more than a month later (‘2 months’ and ‘a few months’), unknown for one. The first healthcare professional was contacted by 19 within a week of symptoms, 10 between 1 week and 1 month, and 10 later than 1 month. Patients were asked which healthcare professional they first contacted. Most (62%, 24/39) saw a GP, 26% (10) a GDP, whilst three saw a hospital doctor or dentist (two dental hospital, one A&E), one saw a nurse and one either a doctor or dentist (patient could not remember). Patients were asked about what triggers made them seek health care professional advice (Table 3). Triggers were multiple and besides the general concern about symptoms the dominant triggers were anxiety and worry (49%), the need to resolve uncertainty (38%), to avoid problems getting worse (28%) and being advised to seek professional help by others close to them (21%). One in six patients (6/38) said that they had not been satisfied with advice received from health care professionals. About half (46%, 18/39) identified one or more barriers to seeking professional advice, though half of these (9/18) were at worst just a ‘little’ bit of a barrier. Four patients ‘very much’ indicated barriers (one from fear of what the symptoms might be, two from costs of a dental check-up and one from both of these) whilst five patients indicated a lesser but ‘quite a bit’ of a barrier (one too busy, one difficulty getting appointment with doctor, one costs of dental check-up, one fear of symptoms and difficulty getting appointment with doctor and one with travel difficulties and difficulty getting appointment with doctor). Specific barriers are shown in Table 4. Four patients said they had been to a chemist/pharmacist for advice in the 6 months before oral cancer was diagnosed. This concerned medications (1), mouthwashes (1) and repeat prescriptions (1) with one unknown. More generally 57% (25/44) said they ‘never’ seek advice from a chemist/pharmacist, 36% (16) said ‘occasionally’ and 7% (3) said ‘sometimes’. Eight patients (18%) said they had asked about mouth problems at some time in their lives.
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Table 3 Seeking advice from a healthcare professional (n = 39). % YES
Patients
What triggered you to seek healthcare professional advice? Symptoms – general 64 25 Need for pain relief 18 7 Desired earlier diagnosis because it would have been 28 11 a problem Anxious and worried about it 49 19 Wanted an explanation/resolve uncertainty 38 15 Advised by significant others 21 8 Another reason for visit (e.g. another issue to GP, 26 10 GDP check-up) Would you have sought advice earlier if you had been more aware of oral cancer and it’s symptoms Definitely yes 44 17 Yes 18 7 Not sure 8 3 No 18 7 Definitely no 13 5 Were you satisfied with the advice received from health care professionals? Definitely yes 66 25/38 Yes 18 7/38 No 8 3/38 Definitely no 8 3/38 The reasons given by the six patients not satisfied with advice received from health care professionals were Consultant aggressive, dismissed her and was abrupt, 1 everyone else she was happy with Dentist dismissed it and did not listen to patient’s 1 concern as patient had noticed poster in waiting room and was worried about it GP said come back in 1 week. Patient went back in 1 1 week. No change. Referred to ENT for biopsy, nothing detected. Told to comeback in 6 months. Pt went to see GDP who thought related to molar Not well informed about long-term 1 Unexplained lump was put down to routine finding 1 and was not noticed the 1st time Happy with GP and new dentist but not with staff at 1 hospital as it had led to 1–2 years delay in diagnosis
Patients suggested that strategies to raise awareness and early presentation should involve increase public awareness through media coverage (television advertisements and programmes, radio, newspaper and magazine columns) with the use of more drastic visual aids on posters and leaflets in dental, GP surgeries and pharmacies so people know what to
look out for. There should be improved Internet resources and an education strategy that more clearly involves schools. Also they felt that there needs to be an emphasis on regular dental or medical check ups, so that asymptomatic lesions and minor symptoms can be acted upon earlier. The lay public should be encouraged to self-examine their mouth whilst tooth brushing and to speak out about their symptoms as soon as they have even the slightest concern.
Discussion In this investigative study we aimed to explore patients’ views on their initial oral cancer symptoms and to gain an insight into their pre-diagnosis cancer journey. We also sought their views on how to get patients to present earlier. The response rate to the survey component of the study was 67% and of these 62% was interviewed. The clinical characteristic seemed to adequately reflect the patient group however it is recognised that patients with advance disease tended to be slightly under represented, as they were more likely to have recurrence or died by the time of the survey. Scott et al.10 carried out interviews prior to treatment when memory recall of events prior to presentation should have been excellent. We chose a 2-year cohort post-treatment as this gave a much larger sample. It is accepted that a cross-sectional study up to 2 years following diagnosis did limit the recall of exact dates of events in their cancer journey, however the study focused on reasons for delay rather than the precise timeline of events. From the interviews it was clear that patients were able to recall their initial symptoms, their reaction and response, and their first presentation to the healthcare professionals (general medical practitioner/general dental practitioner). A semi-structured telephone interview was used as a suitable method to collect data from a relatively large cohort and this approach allowed for considerably more detail than a patients self-completed questionnaire alone but of course lacked the depth of enquiry possible through open face-to-face interviews. The findings of this study support the findings of Scott et al.10 In our cohort a non-healing ulcer or sore was usually the very first thing the patient noted. As a common symptom1 it would be appropriate to highlight this in any awareness initiative. It is notable that the lay public do not necessarily relate
Table 4 Barriers to seeking advice from a healthcare professional (n = 39). Not at all
What were the barriers to you seeking advice? You were too busy Fear of what the symptoms might be Too far to travel/transport difficulties Difficulty getting appointment with doctor Difficulty getting appointment with dentista Cost of getting a dental check-up a
Not applicable for 16 of 39.
A little
%
n
90 90 87 87 87 86
35 35 34 33 20 19
% 8 3 10 5 – 9
Quite a bit
Very much
n
%
n
%
n
3 1 4 2 – 2
3 3 3 8 – 5
1 1 1 3 – 1
– 5 – – 13 –
– 2 – – 3 –
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this symptom to oral cancer and as a trigger for advice regarding onward referral.9 Community Pharmacists and their staff can miss its potential significance.11 Other symptoms first noticed by patients were sore throat, sore tongue or mouth, and persistent lump or swelling. Although common symptoms their potential significance needs to be highlighted as around half of the patients surveyed interpreted their own symptoms as something minor, staying much the same initially, and something that probably would get better by itself. One-third tried self-medication and only a small proportion actually considered it to be potentially serious. As patients tend to view their symptoms as not serious, it is appropriate for oral cancer awareness initiatives to focus on the possibility of cancer as a cause and ‘if in doubt, get checked out’. Unlike Scott et al.10 there was little association in our survey with discomfort whilst eating. Therefore we would suggest that alteration in eating is not a clear screen question to help identify those patients most likely to have a symptom related to oral cancer. It would seem appropriate to target a health awareness message to the lay public as many patients talk about their symptoms to spouse, partner, family or friends. These individuals need to help prompt the patient to early presentation especially as the patients perception is that of a minor condition. The patients close contacts, through raised awareness, could reinforce the message of getting it checked out. However in recognising the importance of family and friends it has to be remembered that over a third said they spoke to nobody about it, thus it is essential to focus awareness on the high-risk patient themselves. The majority would have sought advice earlier if they had been more aware of oral cancer. Also although unresolved and unexplained symptoms largely triggered the patient to seek health care professional advice, in a quarter there was another reason and hence there is an opportunity for screening high-risk patients with symptoms. In contrast to Scott et al.,10 our sample generally did not find access to a doctor or a dentist as a barrier to seeking advice, nor did they find themselves too busy. This emphasises the issue that patients generally thought their symptoms were trivial, would get better by themselves and gave little thought as to it might be cancer. Patients commented they knew nothing more about the disease. In their views the best way to get patients to self refer earlier was through improved awareness of the disease, as many felt there was a gross lack of knowledge in this field of cancers compared to other cancers. It would potentially seem beneficial to attempt to screen high-risk patients and paying for dental check-up might be a detrimental affect. Although there are potential difficulties gaining access to dentists on an emergency basis12 and the cohort of oral cancer patients tend to be from poor socioeconomic backgrounds,1 in our study access to the dentist was not considered a major deterrent, rather it was lack of awareness. Of course there might a geographic difference with respect to access to NHS dental treatment and the cost of private care, hence the influence on the cost of check-up might vary across the country.
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Although professional delay is less of a problem than patient delay,1 another aspect is that a few patients were not satisfied with the advice received from the health care professional. Some were given the incorrect initial diagnosis, leading the patients into a false sense of security. Although most were given a subsequent appointment in the near future following for example a course of antibiotics, the diagnosis was felt to have been delayed. Therefore in the mantra of oral cancer awareness it is essential to make sure that health care professionals have an appreciation of signs, symptoms and the urgent suspected head and neck cancer 2-week rapid referral process. Finally this study has allowed the patients themselves to put forward suggestions as to how to promote earlier presentation. Their emphasis was on raised awareness and their suggestions could be incorporated and evaluated in further research in to this field. Conflict of interest statement There is no financial and personal relationships with other people or organisations that could inappropriately influence (bias) this work. References 1. Rogers SN, Pabla R, McSorley A, Lowe D, Brown JS, Vaughan ED. An assessment of deprivation as a factor in the delay in presentation, diagnosis and treatment in patients with oral and oropharyngeal squamous cell carcinoma’. Oral Oncol 2007;43:648–55. 2. Rogers SN, Brown JS, Woolgar JA, Lowe D, Magennis P, Shaw RJ, et al. Survival following primary surgery for oral cancer. Oral Oncol 2009;45:201–11. 3. Allison P, Franco E, Black M, Feine J. The role of professional diagnostic delays in the prognosis of upper aerodigestive tract carcinoma. Oral Oncol 1998;34(2):147–53. 4. Amir Z, Kwan SY, Landes D, Feber T, Williams SA. Diagnostic delays in head and neck cancers. Eur J Cancer Care 1999;8(4):198–203. 5. Carvalho AL, Pintos J, Schlecht NF, Oliveira BV, Fava AS, Curado MP, et al. Predictive factors for diagnosis of advanced-stage squamous cell carcinoma of the head and neck. Arch Otolaryngol – Head Neck Surg 2002;128(3):313–8. 6. Hollows P, McAndrew PG, Perini MG. Delays in the referral and treatment of oral squamous cell carcinoma. Br Dent J 2000;188(5):262–5. 7. Rogers SN, Lowe D, Fisher SE, Brown JS, Vaughan ED. Health related quality of life and clinical function in patients treated by primary surgery for oral cancer. Br J Oral Maxillofac Surg 2002;40:11–8. 8. Horowitz AM, Canto MT, Child WL. Maryland adults’ perspectives on oral cancer prevention and early detection. J Am Dent Assoc 2002;133(8):1058–63. 9. Rogers SN, Hunter R, Lowe D. Awareness of Oral Cancer in the Mersey region. Br J Oral Maxillofac Surg; in press. 10. Scott SE, Grunfeld EA, McGurk M. Patient’s delay in oral cancer: a systematic review. Community Dent Oral Epidemiol 2006;34(5):337–43. Oct. 11. Rogers SN, Lowe D, Catleugh M, Edwards D. An oral cancer awareness intervention in community pharmacy. Br J Oral Maxillofac Surg 2009 [Epub ahead of print]PMID: 19959266. 12. Rogers SN, Glen P, Robinson A, Lowe D, Grievson B, Edwards D. A survey of General Dental Practitioners in Merseyside regarding urgent appointments and suspected cancer referrals. Prim Dent Care 2008;15(1):25–30.