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Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers
G Model JOMSMP-483; No. of Pages 4
ARTICLE IN PRESS Journal of Oral and Maxillofacial Surgery, Medicine, and Pathology xxx (2016) xxx–xxx
Contents lists available at ScienceDirect
Journal of Oral and Maxillofacial Surgery, Medicine, and Pathology journal homepage: www.elsevier.com/locate/jomsmp
Original Research
Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers Mamta Agrawal a,∗ , Sushma Pandey b , Shikha Jain c , Tulika Gupta d , Jyoti Sheoran d , Tayyeb Sultan Khan a a
Purvanchal Institute of Dental Sciences (PIDS), Gorakhpur, India Department of Psychology, DDU University, Gorakhpur, India c Department of Orthodontics, People’s College of Dental Sciences and Research Centre, Bhopal, India d Department of OMFS, Central Poly Clinic, Gorakhpur, India b
a r t i c l e
i n f o
Article history: Received 18 April 2014 Received in revised form 25 January 2016 Accepted 15 February 2016 Available online xxx Keywords: Barriers patient delay Help seeking behavior Delay predictors
a b s t r a c t Objective: The aim of this study was to assess the help seeking behavior and factors predictive of delayed approach to health care professional after symptom appraisal for oral cancer. It also intended to determine the barriers which might contribute to delayed presentation of symptomatic subjects to the clinician. Method: A total of 1635 persons participated in the study. Respondents recording symptom appraisal (226) were then further questioned about their help seeking behavior and barriers to help seeking. Logistic regression analysis was applied to estimate odds ratio (OR) and 95% confidence interval (CI) for delay or no delay in seeking help. Results: An overall delay in the help seeking behavior was observed; 65.5% of the total participants were likely to delay help seeking after symptom appraisal. A significant difference in help seeking behavior was seen among individuals with more symptom knowledge having a mean score of 1.41 (SD = 0.49) in comparison to those having lesser knowledge (mean = 1.29 ± 0.45). Logistic regression analysis revealed ‘knowledge of symptoms for oral cancer’ as the only significant independent predictor of delay, contributing alone to 17% (R2 = 0.17) of the variance in predicting delay. Additionally among the different barriers, indifference toward their symptoms was the most important factor (54.43%) for delay in help seeking. Conclusion: The results of this study show that increased symptom knowledge for oral cancer may decrease patient delay after symptoms appraisal. Recognizing barriers for delayed presentation of the symptomatic subjects to the clinician should be an important aim for improving oral cancer prognosis. © 2016 Asian AOMS, ASOMP, JSOP, JSOMS, JSOM, and JAMI. Published by Elsevier Ltd. All rights reserved.夽
1. Introduction Delay in the diagnosis of oral cancer has been classified into ‘patient delay and professional delay’. Patient delay is defined as the time between the patient’s recognition of symptoms to the first medical contact. Patient-related delay is usually the longest
夽 Asian AOMS: Asian Association of Oral and Maxillofacial Surgeons; ASOMP: Asian Society of Oral and Maxillofacial Pathology; JSOP: Japanese Society of Oral Pathology; JSOMS: Japanese Society of Oral and Maxillofacial Surgeons; JSOM: Japanese Society of Oral Medicine; JAMI: Japanese Academy of Maxillofacial Implants. ∗ Corresponding author at: Purvanchal Institute of Dental Sciences (PIDS), Department of Oral and Maxillofacial Surgery, GIDA, Gorakhpur 273001, India. Tel.: +91 9935970689; fax: +91 0551 2202539. E-mail address: [email protected] (M. Agrawal).
varying from 19 to 90 days [1]. This delay can be further subdivided into four stages according to Andersen’s model of Total Patient Delay consisting of ‘appraisal delay’ which is the time from the individual detecting the symptom to realizing that it requires medical attention. The second stage ‘illness delay’ is the number of days elapsing from the time an individual infers his illness to the day he/she decides to seek medical help. The period between the decision to seek medical attention and the person acting on this decision by making an appointment is ‘behavioral delay’ and the time elapsed between the person making an appointment and first receiving medical attention is ‘scheduling delay’. Anderson and Cacioppo in their study concluded that among the various patient delay factors, appraisal delay accounted for significantly more of the total patient delay than any other component [2].
http://dx.doi.org/10.1016/j.ajoms.2016.02.003 2212-5558/© 2016 Asian AOMS, ASOMP, JSOP, JSOMS, JSOM, and JAMI. Published by Elsevier Ltd. All rights reserved.夽
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003
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In oral cancer cases approximately 30% of patients wait for more than three months after symptom appraisal to seek help from a health care professional; this delay after symptom appraisal is an important determinant of prognosis and results in decreased survival rates [3]. Detecting oral cancer at an early stage is the most effective means of improving survival and reducing morbidity from the disease [4]. Against this backdrop, the study plans to assess the variations among individual approach to health care professional and barriers to help seeking in case of symptom appraisal for oral cancer. The present study intends to 1. Assess the help seeking behavior of individuals experiencing symptoms related to oral cancer. 2. Find factors predictive of delay to help seeking after selfidentification of oral cancer symptoms. 3. Attempt to determine the barriers to seeking advice from health care professional.
where scoring was done with one mark for each correct answer. Respondents’ scoring 3 or less were grouped as having ‘less knowledge’ and those scoring 4 or above were grouped under ‘adequate knowledge’. Socio-demographic information was also recorded. Education of respondent was categorized in two sections, ‘Up to High school’ group (formal education up to 12th grade or less) and ‘Further education’ group (formal education beyond 12th grade). Responses were subjected to statistical analysis (SPSS) in terms of mean ± SD, t test or analysis of variance. Logistic regression was done to obtain odds ratios (OR) and confidence interval (95% CI). Independent variables included gender, age, education, residence environment (urban, rural) and knowledge scores whereas delay/no delay was the outcome variable.
3. Results 3.1. Sample characteristics and description of patient delay
2. Method 2.1. Sample In the year 2012, a study was conducted on the general public belonging to different segments of society in rural/urban Gorakhpur district, one of the high-risk areas of eastern U.P (India) where the use of tobacco is very popular. Stratified random sampling technique was used to collect data. Consent was taken from the selected participants after explaining the nature of the study. A total of 1635 persons participated in the study. Individuals diagnosed with oral cancer at any point of their lifetime were excluded from this study. The study procedure was approved by the ethical committee of the institutional review board. 2.2. Measuring tool The inclusion criteria for further interview included symptom appraisal for oral cancer within last 12 months. Symptom experience was recorded by asking ‘have you experienced any symptom in the last twelve months that you thought may be oral cancer’. (Respondents were not provided any information regarding oral cancer signs/symptoms.) Responses were recorded as ‘Yes’ or ‘No’. Further the help seeking behavior in case of symptom experience as perceived by the respondents was also recorded by asking ‘How soon did you visit your doctor after finding a suspicious symptom in your mouth?’ Response categories were ‘no delay’ (within 3 weeks), ‘delay’ (more than 3 weeks/did not seek help). A primary delay was considered if the respondent took more than three weeks to seek help after noticing a suspicious symptom. Delay in help seeking was coded as 1 and no delay as 2. To determine the barriers to help seeking; respondents showing delay or unwilling to seek medical advice were further questioned ‘Why were/are you unwilling to seek medical advice? Responses included ‘Don’t think important’ (respondents feeling their symptom was transient or minor, they may waste the doctors time), ‘Cost’ of consultation/treatment, ‘Fear’ apprehension regarding the consultation, ‘Access problem’ the distance needed to travel, the perceived hassle of visiting an health care professional, and ‘lack of time’ (respondents having competing responsibilities). The respondents were expected to mark only the most appropriate one. Knowledge of symptoms of oral cancer were assessed via seven closed ended questions (pain; red/white patch; non healing ulcer; swelling; sore throat; difficulty in moving tongue/jaw; numbness)
Out of the 1635 respondents, 226 (13.8%) reported noticing lesions in oral cavity in last twelve-month period which they suspected may be symptoms related to oral cancer. Of those respondents experiencing symptoms 19.0% were female and 81.0% male, 55.3% were from urban environment whereas 44.7% from rural background. Education wise 14.2% belonged to ‘Up to High school’ group, and 85.8% to ‘Further education’ group. The help seeking behavior and barriers to help seeking were assessed for only those respondents experiencing symptoms. Respondents’ help seeking behavior was assessed and treated statistically in terms of mean and SD (as a function of age, gender, education, residence and knowledge score of oral cancer symptoms). 34.5% of the individuals reporting symptom experience did not delay help seeking; whereas delayed help seeking was observed in 65.5% of the respondents. Although females showed a higher positive tendency for help seeking with a mean of 1.37 (SD = 0.49) than males (mean = 1.34 ± 0.48), the difference was not significant. Similarly there was no significant age, education and residence environment difference for delay in help seeking (P > .05) (Table I). Individuals with more symptom knowledge had a higher mean score (1.41 ± 0.49) in comparison to those having lesser knowledge (1.29 ± 0.454) with the difference being statistically significant (F = 3.96, P = .048) for their help seeking behavior.
Table I Mean and SD of help seeking behavior by age, gender, residence, education and knowledge score. Variable Age 15–24 yr 25–39 yr 40–59 yr 60 above Sex Male Female Residence Urban Rural Education Up to high school Further education Knowledge score 3 or less 4 or more *
Mean ± SD 1.34 1.35 1.27 1.48
± ± ± ±
F value
0.48 0.48 0.45 0.51
0.561
1.34 ± 0.48 1.37 ± 0.49
0.169
1.34 ± 0.48 1.35 ± 0.48
0.002
1.31 ± 0.47 1.35 ± 0.48
0.174
1.29 ± 0.45 1.41 ± 0.49
3.960*
P < .05
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003
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3.2. Predictors of help-seeking behavior All the independent variables (gender, age, residence, education and knowledge of risk factors) were entered into univariate logistic regression as potential predictors of delay. Only knowledge of oral cancer symptoms was found to be the strongly contributing factor for patient delay (P < .05). Table II presents the odds from multiple regression model to show the association between different demographic characteristics of delay. Compared to the female population, males were 1.2 times more likely to delay help seeking. The risk of individual delay was least likely for the 60 plus age group among all the age groups. The rural population fared marginally better compared to the urban respondents with the risk of delay being 1.16 times more for the urban population. The risk of delay though higher was also not significant for the ‘Up to High School’ group (1.29 times) than their more educated counterparts. Only knowledge of symptoms of oral cancer presented as a significant predictor for risk of delay, with an increase of risk of delay (1.67 times) for the respondents scoring less (3 or less) compared to those scoring better. This factor alone resulted in 17% (R2 = 0.17) variance in predicting patient delay. Fig. I. Displays major barriers to seeking help from health care professional.
3.3. Barriers to delayed presentation The respondents who delayed or were least likely to seek medical help in case of symptom appraisal were further asked a close ended question ‘why would you not visit your doctor after finding a symptom in your mouth’ with 5 answer options (cost/fear/difficult to access/lack of time/don’t think important). 54.43% of respondents listed ‘don’t think it is important’ as the main reason, 14.23% said that ‘lack of time’ was their chief reason, 13.23% stated monetary constraints as the main barrier. Fear and accessibility problems were least likely to act as a barrier to early reporting (Fig. I). 4. Discussion This study focuses on factors resulting in delayed help seeking behavior of individuals after symptom appraisal for oral cancer. Studies regarding delayed reporting and advancement of oral cancer show that patient delay is one of the biggest contributing factors Table II Result of multiple logistic regression analysis. Variable
Delay (n = 148) N (%)
Gender 121 (66) Male 27 (63) Female Age 61 (66) 15–24 yr 36 (65) 25–39 yr 35 (73) 40–59 yr 16 (52) 60 plus Residence 82 (66) Urban 66 (65) Rural Education 22 (69) Up to high school Further 126 (65) education Knowledge score 85 (71) 3 or less 63 (59) 4 or more N = 226. * P < .05.
No delay (n = 78) N (%)
OR (95% CI)
P value
62 (34) 16 (37)
1.21 (0.59–2.51) –
0.605
31 (34) 19 (35) 13 (27) 15 (48)
1.97 (0.81–4.76) 1.92 (0.77–4.82) 2.23 (0.84–5.92) –
43 (34) 35 (35)
1.16 (0.65–2.07) –
10 (31)
1.29 (0.55–3.00)
68 (35)
–
0.556
34 (29) 44 (41)
1.67 (0.94–2.97) –
0.042*
0.382
0.617
toward progression of the disease and increased mortality. Early care-seeking is thus a tenet in oncology, and delay in diagnosis and treatment of cancer has been a subject of research for decades [2]. Reasons for patient delay have been hypothesized and explored in earlier studies; however findings have been inconsistent due to differences in the population under study or the study design. Scott et al. performed a systematic literature review of articles published between 1975 and 2005 to identify known factors associated with patient delay [5]. They concluded that clinical factors, socio demographic variables, and patient health related behaviors were not related to the duration of patient delay; although healthcare and psychosocial factors may play a role. Another reason for delay is that early oral cancer does not present with symptoms of strong sensory signals such as pain or bleeding and does not appear to be threatening to the patient [6]. Smith et al. in a study on ‘Patients’ help-seeking experiences and delay in cancer presentation’ concluded that oral symptoms are usually interpreted as minor and trivial conditions by most of the patients that cause no need for emotional distress and a delay in attributing these signs to illness is observed [7]. Other factors leading to delay include self-medication; studies have shown patients attempt to treat symptoms with over the counter products or seek advice from pharmacists who commonly advise gels, creams or mouth rinses; prolonging the delay [8,9]. The delay after symptom appraisal due to the help seeking behavior of respondents was assessed across demographic variables in this study. It was observed that overall, a high percentage of respondents among the various demographic groups were likely to delay help seeking. 65.5% of participants were likely to wait for >3weeks before seeking help. The findings differ from the results of Scott et al. where the anticipated delay was considered if the respondent differed help seeking for more than 3 months in contrast to the three weeks’ time period in this study [10]. A 3-week period for delay is considered as a reasonable time period as most of the public health promotion literature advices to seek medical advice for wounds that do not heal for two weeks (plus an additional week for approaching a health care professional) [11,12]. No significant difference in the mean scores of help seeking behavior was seen across the various demographic groups. Although females, >60 yr aged respondents and those with higher education were more inclined to earlier help seeking behavior; but the difference was not statistically significant. The difference in
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003
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mean scores of respondents with less or more symptom knowledge was significant, directly implying a better disease outcome for those with greater knowledge. Earlier research has also identified symptom recognition contributing to help seeking behavior both in already diagnosed cases of oral cancer based on retrospective recall or cases with hypothetical/symptom appraisal scenarios [13]. Among the various demographic factors (gender, age, residence or education) used to predict delay, none correlated significantly to delay in regression analysis. Guggenheimer et al. observed that the length of patient delay is unrelated to patients’ age, gender, history of alcohol consumption or amount of education [6]. However Llewellyn et al. did find education to be important in shortening patient delay and lifestyle stress causing longer patient delay [12]. The only factor predictive of delay in our study was knowledge of oral cancer symptoms. This implied that better understanding of oral cancer resulted in early help seeking intention and knowledge of symptoms is necessary to make attributional decisions after symptom appraisal [12]. The reason for this may be due to the fact that oral cancer usually presents as minor symptoms which may be related to otherwise innocuous diseases. Numerous researches have proved that better health knowledge is associated with positive heath behavior. Similarly the results of this present study also support this theory as respondents having higher knowledge scores were more active help seekers as compared to the group having lower knowledge scores. Research also suggests that patient delay is influenced by symptom interpretation, knowledge of oral cancer, psychosocial factors as coping responses and barriers to seek help such as problems with access and their social circumstances and responsibilities [14,15]. While trying to assess the factors which serve as barriers for patient not willing to seek medical advice even after appraisal of symptoms the response was categorized into five broad divisions for simplicity. Whereas Scott et al. in a study ‘Barriers and Triggers to Seeking Help for Potentially Malignant Oral Symptoms’ categorized responses into three broad groups: ‘Beliefs regarding the oral symptoms’, ‘Factors relating to the Health Care Professional’ and ‘Factors relating to the circumstance’ which basically included similar responses [16]. Among the various barriers indifference or misattribution of symptoms and lack of time were the leading causes of patient delay. Additionally, in this Indian subpopulation monetary concern was also a perceived barrier to seek help. A limitation of this study was that potential predictors of delay as psycosocial factors (individuals’ symptom interpretation/attribution), use of herbal/over the counter drugs were not recorded as correlates. Also, the help-seeking behavior and perceived barriers were self-reported and does not necessarily imply actual presence of oral cancer as the subjects were not true patients. However this may actually be the strength of this study as the responses were not based on retrospective recall; rather they were based on actual recent help seeking behavior. In spite of the limitations of this methodology, a general understanding of the patient behavior in case of symptom appraisal can
be assessed and preventive strategies can be programmed to focus on these weak areas. 5. Conclusion The results of this study conclude that increased knowledge of oral cancer symptoms may enhance early help-seeking behavior. Addressing barriers to seeking medical help is an important target which should be focused on. Special emphasis should be on explaining that even though the early symptoms of oral cancer appear innocuous and benign; they may lead to grave consequences if ignored for long periods. Conflict of interest statement There is no conflict of interest or ownership regarding this submission. References [1] López-Jornet P, Camacho-Alonso F. New barriers in oral cancer. Patient accessibility to dental examination – a pilot study. Oral Oncol 2006;42:1022–5. [2] Andersen BL, Cacioppo JT. Delay in seeking a cancer diagnosis: delay stages and psychophysiological comparison processes. Br J Soc Psychol 1995;34:33–52. [3] Scott SE, McGurk M, Grunfeld EA. The process of symptom appraisal: cognitive and emotional responses to detecting potentially malignant oral symptoms. J Psychosom Res 2007;62:621–30. [4] Lehew CW, Epstein JB, Kaste LM, Choi Y-K. Assessing oral cancer early detection: clarifying dentists’ practices. J Public Health Dent 2010;70:93–100. [5] Scott SE, Grunfeld EA, McGurk M. Patient’s delay in oral cancer: a systematic review. Community Dent Oral Epidemiol 2006;34:337–43. [6] Guggenheimer J, Verbin RS, Johnson JT, Horkowitz CA, Myers EN. Factors delaying the diagnosis of oral and oropharyngeal carcinomas. Cancer 1989;64:932–5. [7] Smith LK, Pope C, Botha JL. Patients’ help-seeking experiences and delay in cancer presentation: a qualitative synthesis. Lancet 2005;366:825–31. [8] Grant E, Silver K, Bauld L, Day R, Warnakulasuriya S. The experiences of young oral cancer patients in Scotland: symptom recognition and delays in seeking professional help. Br Dent J 2010;208:465–71. [9] Rogers SN, Vedpathak SV, Lowe D. Reasons for delayed presentation in oral and oropharyngeal cancer: the patients perspective. Br J Oral Maxillofac Surg 2011;49:349–53. [10] Scott SE, Khwaja M, Low E, Weinman J, Grunfeld EA. A randomised controlled trial of a pilot intervention to encourage early presentation of oral cancer in high risk groups. Patient Educ Couns 2012;88:241–8. [11] Pitiphat W, Diehl SR, Laskaris G, Cartsos V, Douglass CW, Zavras AI. Factors associated with delay in the diagnosis of oral cancer. J Dent Res 2002;81:192–7. [12] Llewellyn CD, Johnson NW, Warnakulasuriya S. Factors associated with delay in presentation amongst younger patients with oral cancer. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2004;97:707–13. [13] Simon AE, Waller J, Robb K, Wardle J. Patient delay in presentation of possible cancer symptoms: the contribution of knowledge and attitudes in a population sample from the United Kingdom. Cancer Epidemiol Biomarkers Prev 2010;19:2272–7. [14] Awojobi O, Scott SE, Newton T. Patients’ perceptions of oral cancer screening in dental practice: a cross-sectional study. BMC Oral Health 2012;12:55. [15] de Nooijer J, Lechner L, de Vries H. A qualitative study on detecting cancer symptoms and seeking medical help: an application of Andersen’s model of total patient delay. Patient Educ Couns 2001;42:145–57. [16] Scott SE, Grunfeld EA, Auyeung V, McGurk M. Barriers and triggers to seeking help for potentially malignant oral symptoms: implications for interventions. J Public Health Dent 2009;69:34–40.
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003
ARTICLE IN PRESS Journal of Oral and Maxillofacial Surgery, Medicine, and Pathology xxx (2016) xxx–xxx
Contents lists available at ScienceDirect
Journal of Oral and Maxillofacial Surgery, Medicine, and Pathology journal homepage: www.elsevier.com/locate/jomsmp
Original Research
Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers Mamta Agrawal a,∗ , Sushma Pandey b , Shikha Jain c , Tulika Gupta d , Jyoti Sheoran d , Tayyeb Sultan Khan a a
Purvanchal Institute of Dental Sciences (PIDS), Gorakhpur, India Department of Psychology, DDU University, Gorakhpur, India c Department of Orthodontics, People’s College of Dental Sciences and Research Centre, Bhopal, India d Department of OMFS, Central Poly Clinic, Gorakhpur, India b
a r t i c l e
i n f o
Article history: Received 18 April 2014 Received in revised form 25 January 2016 Accepted 15 February 2016 Available online xxx Keywords: Barriers patient delay Help seeking behavior Delay predictors
a b s t r a c t Objective: The aim of this study was to assess the help seeking behavior and factors predictive of delayed approach to health care professional after symptom appraisal for oral cancer. It also intended to determine the barriers which might contribute to delayed presentation of symptomatic subjects to the clinician. Method: A total of 1635 persons participated in the study. Respondents recording symptom appraisal (226) were then further questioned about their help seeking behavior and barriers to help seeking. Logistic regression analysis was applied to estimate odds ratio (OR) and 95% confidence interval (CI) for delay or no delay in seeking help. Results: An overall delay in the help seeking behavior was observed; 65.5% of the total participants were likely to delay help seeking after symptom appraisal. A significant difference in help seeking behavior was seen among individuals with more symptom knowledge having a mean score of 1.41 (SD = 0.49) in comparison to those having lesser knowledge (mean = 1.29 ± 0.45). Logistic regression analysis revealed ‘knowledge of symptoms for oral cancer’ as the only significant independent predictor of delay, contributing alone to 17% (R2 = 0.17) of the variance in predicting delay. Additionally among the different barriers, indifference toward their symptoms was the most important factor (54.43%) for delay in help seeking. Conclusion: The results of this study show that increased symptom knowledge for oral cancer may decrease patient delay after symptoms appraisal. Recognizing barriers for delayed presentation of the symptomatic subjects to the clinician should be an important aim for improving oral cancer prognosis. © 2016 Asian AOMS, ASOMP, JSOP, JSOMS, JSOM, and JAMI. Published by Elsevier Ltd. All rights reserved.夽
1. Introduction Delay in the diagnosis of oral cancer has been classified into ‘patient delay and professional delay’. Patient delay is defined as the time between the patient’s recognition of symptoms to the first medical contact. Patient-related delay is usually the longest
夽 Asian AOMS: Asian Association of Oral and Maxillofacial Surgeons; ASOMP: Asian Society of Oral and Maxillofacial Pathology; JSOP: Japanese Society of Oral Pathology; JSOMS: Japanese Society of Oral and Maxillofacial Surgeons; JSOM: Japanese Society of Oral Medicine; JAMI: Japanese Academy of Maxillofacial Implants. ∗ Corresponding author at: Purvanchal Institute of Dental Sciences (PIDS), Department of Oral and Maxillofacial Surgery, GIDA, Gorakhpur 273001, India. Tel.: +91 9935970689; fax: +91 0551 2202539. E-mail address: [email protected] (M. Agrawal).
varying from 19 to 90 days [1]. This delay can be further subdivided into four stages according to Andersen’s model of Total Patient Delay consisting of ‘appraisal delay’ which is the time from the individual detecting the symptom to realizing that it requires medical attention. The second stage ‘illness delay’ is the number of days elapsing from the time an individual infers his illness to the day he/she decides to seek medical help. The period between the decision to seek medical attention and the person acting on this decision by making an appointment is ‘behavioral delay’ and the time elapsed between the person making an appointment and first receiving medical attention is ‘scheduling delay’. Anderson and Cacioppo in their study concluded that among the various patient delay factors, appraisal delay accounted for significantly more of the total patient delay than any other component [2].
http://dx.doi.org/10.1016/j.ajoms.2016.02.003 2212-5558/© 2016 Asian AOMS, ASOMP, JSOP, JSOMS, JSOM, and JAMI. Published by Elsevier Ltd. All rights reserved.夽
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003
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ARTICLE IN PRESS M. Agrawal et al. / Journal of Oral and Maxillofacial Surgery, Medicine, and Pathology xxx (2016) xxx–xxx
2
In oral cancer cases approximately 30% of patients wait for more than three months after symptom appraisal to seek help from a health care professional; this delay after symptom appraisal is an important determinant of prognosis and results in decreased survival rates [3]. Detecting oral cancer at an early stage is the most effective means of improving survival and reducing morbidity from the disease [4]. Against this backdrop, the study plans to assess the variations among individual approach to health care professional and barriers to help seeking in case of symptom appraisal for oral cancer. The present study intends to 1. Assess the help seeking behavior of individuals experiencing symptoms related to oral cancer. 2. Find factors predictive of delay to help seeking after selfidentification of oral cancer symptoms. 3. Attempt to determine the barriers to seeking advice from health care professional.
where scoring was done with one mark for each correct answer. Respondents’ scoring 3 or less were grouped as having ‘less knowledge’ and those scoring 4 or above were grouped under ‘adequate knowledge’. Socio-demographic information was also recorded. Education of respondent was categorized in two sections, ‘Up to High school’ group (formal education up to 12th grade or less) and ‘Further education’ group (formal education beyond 12th grade). Responses were subjected to statistical analysis (SPSS) in terms of mean ± SD, t test or analysis of variance. Logistic regression was done to obtain odds ratios (OR) and confidence interval (95% CI). Independent variables included gender, age, education, residence environment (urban, rural) and knowledge scores whereas delay/no delay was the outcome variable.
3. Results 3.1. Sample characteristics and description of patient delay
2. Method 2.1. Sample In the year 2012, a study was conducted on the general public belonging to different segments of society in rural/urban Gorakhpur district, one of the high-risk areas of eastern U.P (India) where the use of tobacco is very popular. Stratified random sampling technique was used to collect data. Consent was taken from the selected participants after explaining the nature of the study. A total of 1635 persons participated in the study. Individuals diagnosed with oral cancer at any point of their lifetime were excluded from this study. The study procedure was approved by the ethical committee of the institutional review board. 2.2. Measuring tool The inclusion criteria for further interview included symptom appraisal for oral cancer within last 12 months. Symptom experience was recorded by asking ‘have you experienced any symptom in the last twelve months that you thought may be oral cancer’. (Respondents were not provided any information regarding oral cancer signs/symptoms.) Responses were recorded as ‘Yes’ or ‘No’. Further the help seeking behavior in case of symptom experience as perceived by the respondents was also recorded by asking ‘How soon did you visit your doctor after finding a suspicious symptom in your mouth?’ Response categories were ‘no delay’ (within 3 weeks), ‘delay’ (more than 3 weeks/did not seek help). A primary delay was considered if the respondent took more than three weeks to seek help after noticing a suspicious symptom. Delay in help seeking was coded as 1 and no delay as 2. To determine the barriers to help seeking; respondents showing delay or unwilling to seek medical advice were further questioned ‘Why were/are you unwilling to seek medical advice? Responses included ‘Don’t think important’ (respondents feeling their symptom was transient or minor, they may waste the doctors time), ‘Cost’ of consultation/treatment, ‘Fear’ apprehension regarding the consultation, ‘Access problem’ the distance needed to travel, the perceived hassle of visiting an health care professional, and ‘lack of time’ (respondents having competing responsibilities). The respondents were expected to mark only the most appropriate one. Knowledge of symptoms of oral cancer were assessed via seven closed ended questions (pain; red/white patch; non healing ulcer; swelling; sore throat; difficulty in moving tongue/jaw; numbness)
Out of the 1635 respondents, 226 (13.8%) reported noticing lesions in oral cavity in last twelve-month period which they suspected may be symptoms related to oral cancer. Of those respondents experiencing symptoms 19.0% were female and 81.0% male, 55.3% were from urban environment whereas 44.7% from rural background. Education wise 14.2% belonged to ‘Up to High school’ group, and 85.8% to ‘Further education’ group. The help seeking behavior and barriers to help seeking were assessed for only those respondents experiencing symptoms. Respondents’ help seeking behavior was assessed and treated statistically in terms of mean and SD (as a function of age, gender, education, residence and knowledge score of oral cancer symptoms). 34.5% of the individuals reporting symptom experience did not delay help seeking; whereas delayed help seeking was observed in 65.5% of the respondents. Although females showed a higher positive tendency for help seeking with a mean of 1.37 (SD = 0.49) than males (mean = 1.34 ± 0.48), the difference was not significant. Similarly there was no significant age, education and residence environment difference for delay in help seeking (P > .05) (Table I). Individuals with more symptom knowledge had a higher mean score (1.41 ± 0.49) in comparison to those having lesser knowledge (1.29 ± 0.454) with the difference being statistically significant (F = 3.96, P = .048) for their help seeking behavior.
Table I Mean and SD of help seeking behavior by age, gender, residence, education and knowledge score. Variable Age 15–24 yr 25–39 yr 40–59 yr 60 above Sex Male Female Residence Urban Rural Education Up to high school Further education Knowledge score 3 or less 4 or more *
Mean ± SD 1.34 1.35 1.27 1.48
± ± ± ±
F value
0.48 0.48 0.45 0.51
0.561
1.34 ± 0.48 1.37 ± 0.49
0.169
1.34 ± 0.48 1.35 ± 0.48
0.002
1.31 ± 0.47 1.35 ± 0.48
0.174
1.29 ± 0.45 1.41 ± 0.49
3.960*
P < .05
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3.2. Predictors of help-seeking behavior All the independent variables (gender, age, residence, education and knowledge of risk factors) were entered into univariate logistic regression as potential predictors of delay. Only knowledge of oral cancer symptoms was found to be the strongly contributing factor for patient delay (P < .05). Table II presents the odds from multiple regression model to show the association between different demographic characteristics of delay. Compared to the female population, males were 1.2 times more likely to delay help seeking. The risk of individual delay was least likely for the 60 plus age group among all the age groups. The rural population fared marginally better compared to the urban respondents with the risk of delay being 1.16 times more for the urban population. The risk of delay though higher was also not significant for the ‘Up to High School’ group (1.29 times) than their more educated counterparts. Only knowledge of symptoms of oral cancer presented as a significant predictor for risk of delay, with an increase of risk of delay (1.67 times) for the respondents scoring less (3 or less) compared to those scoring better. This factor alone resulted in 17% (R2 = 0.17) variance in predicting patient delay. Fig. I. Displays major barriers to seeking help from health care professional.
3.3. Barriers to delayed presentation The respondents who delayed or were least likely to seek medical help in case of symptom appraisal were further asked a close ended question ‘why would you not visit your doctor after finding a symptom in your mouth’ with 5 answer options (cost/fear/difficult to access/lack of time/don’t think important). 54.43% of respondents listed ‘don’t think it is important’ as the main reason, 14.23% said that ‘lack of time’ was their chief reason, 13.23% stated monetary constraints as the main barrier. Fear and accessibility problems were least likely to act as a barrier to early reporting (Fig. I). 4. Discussion This study focuses on factors resulting in delayed help seeking behavior of individuals after symptom appraisal for oral cancer. Studies regarding delayed reporting and advancement of oral cancer show that patient delay is one of the biggest contributing factors Table II Result of multiple logistic regression analysis. Variable
Delay (n = 148) N (%)
Gender 121 (66) Male 27 (63) Female Age 61 (66) 15–24 yr 36 (65) 25–39 yr 35 (73) 40–59 yr 16 (52) 60 plus Residence 82 (66) Urban 66 (65) Rural Education 22 (69) Up to high school Further 126 (65) education Knowledge score 85 (71) 3 or less 63 (59) 4 or more N = 226. * P < .05.
No delay (n = 78) N (%)
OR (95% CI)
P value
62 (34) 16 (37)
1.21 (0.59–2.51) –
0.605
31 (34) 19 (35) 13 (27) 15 (48)
1.97 (0.81–4.76) 1.92 (0.77–4.82) 2.23 (0.84–5.92) –
43 (34) 35 (35)
1.16 (0.65–2.07) –
10 (31)
1.29 (0.55–3.00)
68 (35)
–
0.556
34 (29) 44 (41)
1.67 (0.94–2.97) –
0.042*
0.382
0.617
toward progression of the disease and increased mortality. Early care-seeking is thus a tenet in oncology, and delay in diagnosis and treatment of cancer has been a subject of research for decades [2]. Reasons for patient delay have been hypothesized and explored in earlier studies; however findings have been inconsistent due to differences in the population under study or the study design. Scott et al. performed a systematic literature review of articles published between 1975 and 2005 to identify known factors associated with patient delay [5]. They concluded that clinical factors, socio demographic variables, and patient health related behaviors were not related to the duration of patient delay; although healthcare and psychosocial factors may play a role. Another reason for delay is that early oral cancer does not present with symptoms of strong sensory signals such as pain or bleeding and does not appear to be threatening to the patient [6]. Smith et al. in a study on ‘Patients’ help-seeking experiences and delay in cancer presentation’ concluded that oral symptoms are usually interpreted as minor and trivial conditions by most of the patients that cause no need for emotional distress and a delay in attributing these signs to illness is observed [7]. Other factors leading to delay include self-medication; studies have shown patients attempt to treat symptoms with over the counter products or seek advice from pharmacists who commonly advise gels, creams or mouth rinses; prolonging the delay [8,9]. The delay after symptom appraisal due to the help seeking behavior of respondents was assessed across demographic variables in this study. It was observed that overall, a high percentage of respondents among the various demographic groups were likely to delay help seeking. 65.5% of participants were likely to wait for >3weeks before seeking help. The findings differ from the results of Scott et al. where the anticipated delay was considered if the respondent differed help seeking for more than 3 months in contrast to the three weeks’ time period in this study [10]. A 3-week period for delay is considered as a reasonable time period as most of the public health promotion literature advices to seek medical advice for wounds that do not heal for two weeks (plus an additional week for approaching a health care professional) [11,12]. No significant difference in the mean scores of help seeking behavior was seen across the various demographic groups. Although females, >60 yr aged respondents and those with higher education were more inclined to earlier help seeking behavior; but the difference was not statistically significant. The difference in
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003
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mean scores of respondents with less or more symptom knowledge was significant, directly implying a better disease outcome for those with greater knowledge. Earlier research has also identified symptom recognition contributing to help seeking behavior both in already diagnosed cases of oral cancer based on retrospective recall or cases with hypothetical/symptom appraisal scenarios [13]. Among the various demographic factors (gender, age, residence or education) used to predict delay, none correlated significantly to delay in regression analysis. Guggenheimer et al. observed that the length of patient delay is unrelated to patients’ age, gender, history of alcohol consumption or amount of education [6]. However Llewellyn et al. did find education to be important in shortening patient delay and lifestyle stress causing longer patient delay [12]. The only factor predictive of delay in our study was knowledge of oral cancer symptoms. This implied that better understanding of oral cancer resulted in early help seeking intention and knowledge of symptoms is necessary to make attributional decisions after symptom appraisal [12]. The reason for this may be due to the fact that oral cancer usually presents as minor symptoms which may be related to otherwise innocuous diseases. Numerous researches have proved that better health knowledge is associated with positive heath behavior. Similarly the results of this present study also support this theory as respondents having higher knowledge scores were more active help seekers as compared to the group having lower knowledge scores. Research also suggests that patient delay is influenced by symptom interpretation, knowledge of oral cancer, psychosocial factors as coping responses and barriers to seek help such as problems with access and their social circumstances and responsibilities [14,15]. While trying to assess the factors which serve as barriers for patient not willing to seek medical advice even after appraisal of symptoms the response was categorized into five broad divisions for simplicity. Whereas Scott et al. in a study ‘Barriers and Triggers to Seeking Help for Potentially Malignant Oral Symptoms’ categorized responses into three broad groups: ‘Beliefs regarding the oral symptoms’, ‘Factors relating to the Health Care Professional’ and ‘Factors relating to the circumstance’ which basically included similar responses [16]. Among the various barriers indifference or misattribution of symptoms and lack of time were the leading causes of patient delay. Additionally, in this Indian subpopulation monetary concern was also a perceived barrier to seek help. A limitation of this study was that potential predictors of delay as psycosocial factors (individuals’ symptom interpretation/attribution), use of herbal/over the counter drugs were not recorded as correlates. Also, the help-seeking behavior and perceived barriers were self-reported and does not necessarily imply actual presence of oral cancer as the subjects were not true patients. However this may actually be the strength of this study as the responses were not based on retrospective recall; rather they were based on actual recent help seeking behavior. In spite of the limitations of this methodology, a general understanding of the patient behavior in case of symptom appraisal can
be assessed and preventive strategies can be programmed to focus on these weak areas. 5. Conclusion The results of this study conclude that increased knowledge of oral cancer symptoms may enhance early help-seeking behavior. Addressing barriers to seeking medical help is an important target which should be focused on. Special emphasis should be on explaining that even though the early symptoms of oral cancer appear innocuous and benign; they may lead to grave consequences if ignored for long periods. Conflict of interest statement There is no conflict of interest or ownership regarding this submission. References [1] López-Jornet P, Camacho-Alonso F. New barriers in oral cancer. Patient accessibility to dental examination – a pilot study. Oral Oncol 2006;42:1022–5. [2] Andersen BL, Cacioppo JT. Delay in seeking a cancer diagnosis: delay stages and psychophysiological comparison processes. Br J Soc Psychol 1995;34:33–52. [3] Scott SE, McGurk M, Grunfeld EA. The process of symptom appraisal: cognitive and emotional responses to detecting potentially malignant oral symptoms. J Psychosom Res 2007;62:621–30. [4] Lehew CW, Epstein JB, Kaste LM, Choi Y-K. Assessing oral cancer early detection: clarifying dentists’ practices. J Public Health Dent 2010;70:93–100. [5] Scott SE, Grunfeld EA, McGurk M. Patient’s delay in oral cancer: a systematic review. Community Dent Oral Epidemiol 2006;34:337–43. [6] Guggenheimer J, Verbin RS, Johnson JT, Horkowitz CA, Myers EN. Factors delaying the diagnosis of oral and oropharyngeal carcinomas. Cancer 1989;64:932–5. [7] Smith LK, Pope C, Botha JL. Patients’ help-seeking experiences and delay in cancer presentation: a qualitative synthesis. Lancet 2005;366:825–31. [8] Grant E, Silver K, Bauld L, Day R, Warnakulasuriya S. The experiences of young oral cancer patients in Scotland: symptom recognition and delays in seeking professional help. Br Dent J 2010;208:465–71. [9] Rogers SN, Vedpathak SV, Lowe D. Reasons for delayed presentation in oral and oropharyngeal cancer: the patients perspective. Br J Oral Maxillofac Surg 2011;49:349–53. [10] Scott SE, Khwaja M, Low E, Weinman J, Grunfeld EA. A randomised controlled trial of a pilot intervention to encourage early presentation of oral cancer in high risk groups. Patient Educ Couns 2012;88:241–8. [11] Pitiphat W, Diehl SR, Laskaris G, Cartsos V, Douglass CW, Zavras AI. Factors associated with delay in the diagnosis of oral cancer. J Dent Res 2002;81:192–7. [12] Llewellyn CD, Johnson NW, Warnakulasuriya S. Factors associated with delay in presentation amongst younger patients with oral cancer. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2004;97:707–13. [13] Simon AE, Waller J, Robb K, Wardle J. Patient delay in presentation of possible cancer symptoms: the contribution of knowledge and attitudes in a population sample from the United Kingdom. Cancer Epidemiol Biomarkers Prev 2010;19:2272–7. [14] Awojobi O, Scott SE, Newton T. Patients’ perceptions of oral cancer screening in dental practice: a cross-sectional study. BMC Oral Health 2012;12:55. [15] de Nooijer J, Lechner L, de Vries H. A qualitative study on detecting cancer symptoms and seeking medical help: an application of Andersen’s model of total patient delay. Patient Educ Couns 2001;42:145–57. [16] Scott SE, Grunfeld EA, Auyeung V, McGurk M. Barriers and triggers to seeking help for potentially malignant oral symptoms: implications for interventions. J Public Health Dent 2009;69:34–40.
Please cite this article in press as: Agrawal M, et al. Help seeking behavior and predictors of patient delay after symptom appraisal for oral cancer and perceived barriers. J Oral Maxillofac Surg Med Pathol (2016), http://dx.doi.org/10.1016/j.ajoms.2016.02.003