Family Practice Advance Access originally published online on July 8, 2005
Family Practice 2005 22(5):554-559; doi:10.1093/fampra/cmi058
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Patient factors associated with delay in primary care among patients with head and neck carcinoma: a case-series analysis
a Julius Center for Health Sciences and Primary Care, Section Medical and Health Psychology, STR.3.107, University Medical Center Utrecht, PO Box 85060, 3508 AB Utrecht and b Department of Otorhinolaryngology, University Medical Center Utrecht, PO Box 85060, 3508 GA Utrecht, The Netherlands
Correspondence to Debbie Tromp; Email: d.m.tromp{at}med.uu.nl
Received 16 December 2004; Accepted 11 April 2005.
Tromp DM, Brouha XDR, Hordijk G-J, Winnubst JAM and de Leeuw JRJ. Patient factors associated with delay in primary care among patients with head and neck carcinoma: a case-series analysis. Family Practice 2005; 22: 554–559.
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Abstract |
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Background. Head and neck cancer patients are often diagnosed with advanced stage disease, while the location is easily accessible for examination or distinct symptoms are present. Professional delay in primary care affects tumour stage and survival. There has been little research on the role of the patient in delaying referral or diagnosis once the patient has visited a primary health care professional.
Objectives. Our aim was to identify patient-related factors which are associated with delay in primary care and the referral to hospital.
Methods. Case-series analysis using semi-structured interviews combined with questionnaires was conducted among 306 consecutive patients newly diagnosed in a tertiary referral centre for head and neck oncology patients in The Netherlands. The main outcome measure was delay in returning to the GP or dentist after the first consultation. Logistic regression analyses were performed to test which patient-related variables made delay more likely.
Results. 155 patients (53%) were not referred or followed up after the first medical contact with the GP or dentist. Fifty per cent (n = 78) of them delayed returning to the health professional for more than three weeks. Patients were more likely to delay when they experienced voice change, were not familiar with head and neck cancer, were not suspicious of cancer or were generally not inclined to seek support.
Conclusions. Delay in returning to the health professional is partly dependent on patient-related factors. Therefore, patients should be educated about the possible meaning and expected time-course of the symptoms and be strongly advised to return, or be followed up, within three to four weeks if the symptoms do not disappear.
Keywords. Diagnostic delay, head and neck carcinoma, referral.
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Introduction |
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Early staging of cancer of the head and neck is associated with improved survival and quality of life after treatment.1 However, a large proportion of patients with cancer of the head and neck present with advanced disease and this proportion has increased in the past twenty years.2–4 The reason for a patient to be diagnosed with advanced disease can be due to the patient's delay in seeking medical care, misdiagnosis by the GP or dentist in primary care who needs to refer the patient, or mismanagement in diagnosing and treating the patient once s/he attends the hospital. In The Netherlands, most patients first consult a primary care physician (GP or dentist) who refers the patient to an otolaryngologist or oral surgeon in the hospital when the patient cannot be treated in primary care. Professional delay in primary care was found to influence tumour stage and survival.5–7 Most studies that identified factors related to this professional delay focused on tumour-related and doctor-related reasons for delay.8–11 However, the care seeking behaviour of the patient plays an important role during the referral period, especially when the patient is not referred at the first consultation and needs to decide when to make further appointments.
This study aimed to identify several patient-related factors which have been suggested as influencing professional delay including: (a) sociodemographics; (b) previous health experiences; (c) risk behaviour like smoking and alcohol consumption; (d) cognitive interpretation of symptoms; and (e) conflict of responsibilities.12 Patient interviews as well as information from primary care units were used to determine the relative contribution of the patient in professional delay after the first medical consultation until the first visit in the hospital.
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Methods |
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Participants
Eligible participants were patients newly diagnosed at the Head and Neck Oncology Unit of the University Medical Centre Utrecht between 2000 and 2002 as having squamous cell carcinoma of the head and neck. Patients with previous malignancy in the head and neck region, cognitive impairments, or poor understanding of Dutch were excluded. A total of 306 patients (participation rate 72%) were interviewed by one of the researchers before treatment took place. The main reasons for refusal to participate were poor physical or mental condition (n = 36; 30%), lack of motivation (n = 35; 29%), or too much burden (n = 27; 22%). Six (5%) patients who agreed to participate died before the interview took place. The non-participants did not differ from the participants regarding sex, age, tumour localisation, or tumour size. The study has been carried out with approval of the Medical Ethical Committee of the University Medical Centre Utrecht.
Professional delay
A questionnaire was sent to the GP or dentist whom the participating patients initially consulted. This provided data on the visit(s) of the patient for the tumour-related symptoms and the referral to the hospital (response rate 94%). A detailed history of the course of events from the first medical consultation until the referral to the hospital was elicited during patient interviews and verified by use of a questionnaire sent to a significant other (response rate 76%). To establish the possible delay between the various steps, the data given by the GP or dentist was used primarily. Only visits in which the tumour-related symptoms were brought up were recorded.
Patient factors
During the patient interview the following data were gathered: (a) sociodemographic data; (b) previous health experiences including the type of health care professional first visited (GP; dentist; medical specialist), patient delay before the first medical consultation (in weeks), previous experience with serious health problems and seeking care (yes; none or little), and previous experience with cancer (none; self/partner; family/friends); (c) daily consumption of cigarettes and alcohol; (d) cognitive interpretation of symptoms including suspicion of cancer (yes; no), knowledge of head and neck cancer (yes; no) and knowledge of cancer in general (yes; no); (e) conflict of responsibilities which was the total score of life events during the past year weighted by the severity rating given by the patient.
In addition, patients were asked about tumour and symptom-related factors like the nature of the first and any subsequent symptoms of the head and neck (‘voice change’, ‘lesion’, ‘swelling’, ‘neck mass’, ‘pain’, ‘irritation’, ‘swallowing problems’, and ‘general symptoms’, e.g. fatigue, tightness of the chest, weight loss), and whether the patients experienced any physical limitation because of their symptoms.
Patients filled in a questionnaire which comprised questions about the following psychological constructs: (1) Optimism was assessed with the Life Orientation Test (LOT)13,14 measuring generalised optimistic expectancies about outcomes in life; (2) Overall defensive functioning was assessed with the Defense Style Questionnaire (DSQ-42),15,16 measuring the extent to which people adopt more mature defence mechanisms (e.g. humour, anticipation) relative to immature ones (e.g. idealisation, denial, and projection); (3) Health hardiness was assessed with the Health Hardiness Inventory (HHI)17,18 measuring the extent to which individuals are committed to health-related activities, perceive health as controllable, and approach potential health stressors as an opportunity for personal growth; (4) Coping style was assessed by a short version of the Utrecht Coping List (UCL),19 measuring active coping, seeking support, avoidance coping, palliative coping, and religious coping; and (5) Anxious and depressive symptoms were assessed with the Hospital Anxiety and Depression Scale (HADS).20
Data were analysed using SPSS version 10.0. The summary statistics for the continuous data are presented by using the mean, median and (interquartile) range. Logistic regression analyses were used to investigate the association between delay and patient and tumour-related factors. Continuous delay data were compared using the Mann-Whitney U-test.
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Results |
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Table 1 shows the characteristics of the study population. The period in primary care until referral ranged from 0 to 176 weeks with a median of 2 weeks (mean 6 weeks).
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Of the 295 patients who initially consulted a health professional other than an otolaryngologist or oral surgeon, 112 patients (38%) were referred at the first visit to an otolaryngologist or oral surgeon in the hospital. One of these patients did not effectuate the referral and returned to the GP 4.5 months later. Of the 183 non-referred patients, 28 patients were scheduled for a follow-up appointment of which 50% were eventually referred within 12 days, and 80% within one month. The other 155 patients were eventually referred with a median delay of six weeks (Fig. 1).
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The 155 non-referred, non-scheduled-up patients needed to return to the GP or dentist on their own initiative and did so with a median delay of 3 weeks (mean 7 weeks, interquartile range 2–8 weeks). Patients decided to return to the health professional because symptoms persisted in spite of treatment (38%) or without being treated (15%), symptoms deteriorated (22%), or because the patient was advised to return if symptoms persisted (6%). Ten per cent of the patients postponed a second consultation for more than four months. Table 2 lists the reasons for waiting to go back to the health professional. Those patients who had received treatment or were advised to wait for a specific period usually returned within 3 weeks. Holidays, interpreting the symptoms as innocent, the idea that the health professional could not be of any help and fear were some of the reasons to postpone a second consultation.
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On the basis of the median duration of three weeks between the first and second visit in primary care, patients were divided into two groups representing delay and non-delay patients. Because only a small part of the patients first visited a dentist, and no differences were found regarding delay, number of visits and reasons to delay, the data on GPs and dentists were presented together. There was no significant association between delay and sociodemographics, tobacco or alcohol consumption, previous health experiences or life events. Delay was significantly associated with the cognitive interpretation of symptoms (Table 3). Patients who had knowledge of head and neck cancer or who suspected cancer were more likely to return to the GP or dentist quickly. Regarding the psychological factors, only coping style was significantly related to delay (Table 3). Those patients who were more likely to adopt seeking support as a coping style were also less likely to show delay in seeking care. Furthermore, patients with a tumour of the glottis or supraglottis and those patients who reported voice change as a first symptom were more likely to delay.
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Ninety-nine patients (54%) were referred after the second visit. Forty-one patients (22%) were referred after the third visit, 27 (15%) after the fourth visit and 17 (9%) after five visits or more. Delay in returning to the health professional for a second time was not related to the number of subsequent visits in primary care, but was significantly related to the remaining delay until referral. In the delay group, the median subsequent delay from the second visit until eventual referral was nine weeks (interquartile range 3–15 weeks). In the non-delay group the median subsequent delay was three weeks (interquartile range 2–7 weeks), which was significantly shorter (P = 0.004).
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Discussion |
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Summary of main findings
Patients with symptoms of head and neck cancer who are not referred or followed up after the first medical consultation, which in our study comprised half of the patients, are at risk for increased professional delay. They need to decide for themselves when to return to the health professional. Postponing the second consultation is not uncommon, as in our study half of the patients who were not referred or followed up returned after more than three weeks and 10% even delayed for more than four months. In addition, patients who delayed the second consultation were prone to further delay in any subsequent consultations. Several tumour and patient factors were identified to be related to delay in returning to the health professional. Patients who experienced voice change were at risk of delay. Besides this, not being familiar with head and neck cancer, or not being suspicious that the symptoms might indicate cancer increased the risk of delay in returning to the health professional. Patients who were generally not inclined to seek support when confronted with a problem were also more at risk of delay.
Comparison with other research
It was found that patients with the interrelated tumour characteristics of a carcinoma of the larynx or experiencing voice change, more often postponed a second consultation. These factors were found to influence professional delay in primary care in other studies as well, although in these studies professional delay was defined as the delay until the eventual referral.7,10 Possibly, the physical functioning of these patients was not disturbed, and patients were therefore not bothered by their symptoms which lead them to delay consultation.
Besides tumour-related factors, several patient-related factors were found to influence delay in returning to the GP or dentist. Those patients who did not have any knowledge of head and neck cancer and were not suspicious of cancer were more likely to postpone a second consultation. This was also reflected in the reasons for postponement. A reason that was frequently mentioned was that the patients interpreted their symptoms as innocent, partly because they were reassured at the first visit. This is in agreement with Kantola et al.6 who suggested that a false sense of security causes patients to postpone a second consultation. Other patients were not bothered by their symptoms or gave priority to holidays, which gives the impression that these patients were also not alarmed by their symptoms. Patients who made less use of the seeking support coping style and thus were not used to ask for support from others were more at risk of delay. The way people cope with a symptom is very important for the decision to seek professional medical consultation.21
Strengths and limitations of the study
To the best of our knowledge, this is the first study on delay in primary care among patients eventually diagnosed as having cancer of the head neck, which takes into account the patient's perspective. The study was exploratory and has identified issues for further research. The strength of the present study is that the interview data were verified against data from the GP or dentist and a significant other of the patient. In this way, recall bias was minimised.
The main limitation of the study is directly related to the method used to recruit participants. Only patients who were eventually diagnosed with cancer were included in the study. Therefore, no data were available regarding the false positives, patients who were referred that did not have cancer, but had other causes for their complaints. In addition, no data were available of patients who were not referred and who did not have cancer, the true negatives, in which presumably the complaints subsided. The symptoms accompanying head and neck cancer are very prevalent in primary care, but the times they indicate malignancy are infrequent. Earlier studies on lymphadenopathy in family practice have shown that GPs are reasonably good at sifting out the worrying ones.22–24 Future research that includes cases who do not have cancer is needed to examine whether these results can be generalised to cases with symptoms of the head and neck, of which only a small proportion presents with neck lumps.
The persistence of the symptoms is an important indicator of possible malignancy. Therefore, health professionals should be extra cautious when symptoms persist, especially among patients with a risk of malignancy due to heavy smoking and drinking. In our study, only 6% of the patients (who were not referred or followed up) indicated that they returned to the health professional because they were advised to return if symptoms persisted. Although we cannot be sure that there were not more patients who were given this advice, it is striking that such a small number of patients indicated this as the main reason to seek medical help for a second time. This result may give a reason to doubt whether the advice that was given to the patients had really came across. A more detailed account of the first consultation would be needed to study the influence of the course of the first consultation on further delay. Several aspects of the first consultation might contribute to the decision making process of the patient to return to the health professional, such as the confidence of the GP about his diagnosis, the quality of the communication, follow-up advice and the patient–doctor relationship.
Implications for clinical practice
It can be concluded that cancer of the head and neck is not always detected at the first professional consultation. Because delay in returning to the health professional is partly dependent on patient-related factors, such as coping style and the cognitive interpretation of symptoms, patients should be educated about the possible meaning of their symptoms and should be strongly advised to return within three to four weeks if symptoms do not disappear. In addition, it is recommended that GPs or dentists should follow up patients who experience symptoms that are suspicious of cancer of the head and neck.25,26
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Declaration |
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Funding: this study was supported by the Dutch Cancer Society.
Ethical approval: Medical Ethical Committee of the University Medical Centre Utrecht.
Conflicts of interest: none.
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Acknowledgments |
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We wish to thank all the patients and staff from the department of Otorhinolaryngology and the department of Cranio and Maxillofacial Surgery for their co-operation.
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