Introduction

Communication within the doctor-patient relationship is complex for a variety of reasons; a clinician's vocabulary may not correspond with a patient's understanding of a given term, resulting in difficulty in establishing the diagnosis for the physician, as well as confusion and potential for ill-informed decision making on the part of the patient. As a result of patients wishing to be increasingly involved in the decision making process1,2 and receive as much information as possible,2 medicine is moving away from a paternalistic model and patient-doctor communication therefore becomes paramount. Furthermore, effective communication has been shown to be related to improved health outcomes.3 We investigated the understanding of terminology commonly used in oral and maxillofacial surgery and oral medicine clinics. Previous studies regarding the use of medical terminology in other settings, such as the emergency department4 and anaesthetics5 have shown a correlation between level of understanding and educational level. In addition, studies have shown generally lower than expected levels of understanding; O'Connell et al.6 showed that in the breast clinic setting only 65% of patients could define the word malignant. However, there are no previous studies examining understanding of oral medicine terminology which is frequently used in both primary care dentistry as well as secondary care.

Methods

Patients attending the out-patient clinics at a London teaching hospital were recruited over two separate three day periods. Patients were asked to complete a short paper-based questionnaire while waiting for their appointment. Participation was voluntary and anonymous, clinicians were not aware of whether patients had completed the questionnaire. For patients with physical disability or low literacy levels, an assistant was permitted to transcribe the answers.

Section one of the questionnaire asked for demographic information including age, gender, first language, level of English spoken, and the highest level of education completed (school (up to GCSE or equivalent), college (up to Alevel or equivalent), university or postgraduate education). The second section, shown in Figure 1, consisted of multiple choice questions asking patients to select the most appropriate definition for the terms 'ulcer', 'blister', 'malignant', 'lesion', and 'benign' from three or four choices, including the option 'Do not know'. The final section asked patients to define various terms ('biopsy', 'metastasis', 'pre-malignant', 'lymph node', and 'tumour'). The terms were selected for inclusion in the questionnaire as they are either frequently used in both verbal and written communication to patients (such as 'ulcer', 'blister', 'biopsy'), or because it was considered vital to establish whether patients understood them despite their less frequent use ('malignant', 'benign', 'metastasis').

Figure 1
figure 1

Part 2 of the patient questionnaire

Results

Data analyses were performed using IBM SPSS Statistics, version 24; Chi-squared test was used for larger data sets, and Fisher's exact test for smaller samples. A total of 123 questionnaires were completed. Of these, 49.6% were completed by males; overall age ranged from 15–87 years, with a mean of 44 years and two months. English was selected as their first language by 90 (73%) respondents. In addition to English, there were 22 other languages listed as the first language, the most common of which was Polish, followed by Portuguese (12%). University was the most frequent level of education selected (29%), with 27.6% leaving education after school. College level education was selected by 24.4% of patients, with 11.1% selecting postgraduate education and nine respondents not stating their educational level. University and post-graduate education was seen in a higher proportion of patients with English as their first language (P = 0.498).

For the multiple choice question, 'blister' was the most commonly understood word, with 91% of those who answered selecting the correct answer; 'benign' was the least well understood, with 64% selecting the correct answer, as shown in Table 1.

Table 1 The percentage of respondents selecting each answer

In total 120 patients answered the question regarding the definition of 'blister', with 109 (90.8%) answering correctly. Of the 113 who answered and gave a level of education, there was a significant difference (p <0.009) between the 87% who reported their educational to be 'school' or 'college' level compared to the 100% of 'university' or 'postgraduate' educated patients with regards to selection of correct answer. There was also a significant difference (p = 0.001) between those who speak English as a first language, and those who do not. However, when examining the educational level in only those who selected English as their first language, there was no significant difference between those who did and did not select the correct answer (p = 0.105).

'Lesion' was one of the least well understood of the four terms, answered correctly by 65% of respondents. There was a significant difference (p = 0.046) between the 70.2% of those answering who spoke English as a first language who selected the correct answer, and the 50% answering correctly for whom English was not their first language. There was also a significant difference between educational level when comparing up to college level with beyond college level (p = 0.0016).

'Benign' was the least well understood of the terms (64% correct) and the term for which 'don't know' was most frequently selected (32.5%). Understanding of this term also showed a significant difference between those educated up to college level, and those educated beyond (p = 0.022). There was also a significant difference (p = 0.001) between those in whom English was their first language and those in whom it was not

Overall there was a significant difference (p <0.0087) between the 52.2% who speak English as a first language in answering all the multiple choice questions correctly, compared to the 27.3% of those who do not speak English as a first language, who answered all four multiple choice questions correctly. There was also a significant difference (p = 0.028) between those educated up to GCSE/A-level standard answering all four questions correctly and those selecting education up to university or postgraduate level.

For the free text answers, the most frequently answered question was 'tumour', with 81.3% of respondents providing an answer, compared to only 31.7% volunteering an answer for 'metastasis'.

'Biopsy' was the most correctly answered question, with 45.3% of patients who gave a definition identifying it as an investigation involving taking a sample. However, 29.1% specifically defined it as a test for cancer.

When asked to define 'tumour', 100 patients gave a response, 49% included malignant or cancer in their response. However, a further 46% including the words 'lump, mass, or swelling', and did not state that it was malignant. Three percent believed that it was a blood clot.

For 'pre-malignant' 67 answers were given, of these 22.4% were aware that it refers to the potential for malignant transformation, but 19.4% stated that it was already a cancer, and a further 28.4% expressed certainty that it will progress to a cancer, as shown in Figure 2. Of the 'other' answers given, three were 'non-cancer'; and two defined it as 'before test' or 'before finding out'.

Figure 2
figure 2

Definitions of pre-malignant

Less than half (16) of the 39 patients who gave definitions of 'metastasis' provided an answer which included both malignancy and the concept of spreading (with only six of these answers specifying spreading to a secondary site). A further 35.9% provided an answer with one or other of the ideas, eg 'that has spread'. Among the incorrect answers were 'sort of mucus', 'foot injury' and 'breast condition, very painful'.

A wide range of definitions were given by the 50 respondents who defined 'lymph node', with 30% stating it was part of the immune system. A further 10% included cancer in their definition, for example 'cancer gland' or 'like cancer'. Twenty-eight percent used the word 'gland' with or without an anatomic location, and 12% provided an anatomical location only for example, 'under arm', as shown in Figure 3.

Figure 3
figure 3

Percentage of patients providing definitions of 'lymph node'

Discussion

For all conditions patients must be aware of the diagnosis, prognosis and treatment options available. In addition, communication skills are important in establishing patient satisfaction with consultations,7,8 as well as improving adherence with treatment plans.9 However, many of the terms used in both oral medicine and oral and maxillofacial surgery out-patient settings may be words with which most patients may not be familiar, or may have a misplaced understanding from either the media or narrow personal experience.

The words 'blister' and 'ulcer' were the most well understood, and this may reflect the fact that these words are perhaps used outside the medical setting; many patients will have experienced blisters previously elsewhere on the body. Also, recurrent oral ulceration (recurrent apthous stomatitis) is thought to affect 25% of the population at some point during their life,10 so it could therefore be expected that this condition will be familiar within a given population; however, patients may have experienced an ulcer without being aware of the diagnosis or name for the condition. The relatively high numbers defining 'biopsy' may also be a reflection of personal experience, as oral biopsies are a common procedure in the out-patient setting.

'Lesion', however, is a much less frequently used word, and more commonly only encountered in the medical context; it is therefore not surprising that it was less well understood.

The level of understanding appears to be related to both level of education and the first spoken language. According to the National Literacy Trust, approximately 16% of adults are 'functionally illiterate' (literacy 'at or below those expected of an 11-year-old').11 However, a patient may feel shame with regards to their health literacy level and therefore not share this information;12 it is therefore vital that the physician actively seeks this information out, particularly in view of the relationship between low health literacy and poor health outcomes.13

The level of understanding of commonly used terms varies considerably, and appears to be related to whether English is the first language. We found 26.8% of patients reported another first language, which reflects the cultural diversity of the population served, and is slightly above the London average of 22.1% in 2011.14

Patients for whom English is a second language often attend clinics with relatives or friends to assist with translation; this was not allowed in the completion of the survey. Had assistance from companions been permitted, the difference between those for whom English is the first language, and for those whom it is not, may have been reduced. There is published evidence however that these patients may benefit more from the use of professional interpreters rather than friends or family.15 We would therefore suggest that physicians enquire as to which language the patient feels comfortable using and whether they would like a professional interpreter when possible to facilitate communication, however, this may not always be feasible, and would have an associated financial cost.

The result showing that 47.8% believe 'pre-malignant' to either already be indicative of cancer or something that will progress with certainty to cancer supports the suggestion of using 'potentially malignant disorder' to replace 'pre-malignant' or 'pre-cancerous',16 however 'pre-malignant' remains both commonly heard in dental settings and found in the scientific literature, which we would actively discourage. Although the term 'potentially malignant' may reduce the confusion regarding potential for change in the lesion, it would not be of benefit to the 30% of respondents who did not select the correct answer for 'malignant'. As the questionnaire was voluntary, it is possible that those who chose to partcipate may be more knowledgable than average, due to personal experience or previous clinic visits, and these results may therefore represent an over-estimation of the level of understanding in this population. As the questionnaire did not ask for the patients' reasons for their appointment or number of previous appointments or treatment, it is not possible to analyse the impact previous experience may have had on their answers.

The suggestions of 'foot bone' and 'breast condition, very painful', for metastasis, and 'blood clot' for tumour, suggest a degree of possible confusion among patients with complex, similar sounding names ('metatarsal', 'mastitis' and 'metastasis' and 'thrombosis' and 'tumour').

It is important to remember that there will be variations in an individual's understanding of different terminology. It is therefore essential that all clinicians modify their language appropriately during consultations in order to deliver information in a comprehensible manner, to educate patients on their condition, to allow informed decision making, and not to cause unnecessary anxiety owing to misunderstanding.

Lack of continuity in healthcare provision, with patients often being under the care of a team rather than an individual, and with shorter appointments, means doctors have less time to establish or verify patient understanding and background knowledge. It is clear that many medical words are used which patients have limited understanding of, and, due to the correlation between effective patient-doctor communication and improved health outcomes,3 time should be spent on exploring the patients' baseline knowledge. Effective communication relies upon understanding what the other person is saying.

Conclusion

A patient's level of understanding may be less than expected in this study, and it is therefore important to use vocabulary the patient can understand. This does not mean that a thorough explanation should be withheld, indeed, those patients with the least knowledge may be the most in need of education by their healthcare professionals if they are to understand their condition and engage in treatment successfully. Furthermore patients prefer to be given as much information as possible, and to do this effectively requires the use of appropriate language.17 Patients increasingly gather information, and therefore derive some of their understanding, from sources away from the immediate doctor-patient consultation, such as the internet;18 this may not always be at a level patients can understand17 or be factually accurate,19 and therefore cannot replace verbal communication.

Ethics approval

Ethics approval was not required. This was a service evaluation deigned to benefit those who use the service. There was no identification of participants, randomisation nor intervention.