Analytical review of reasons for delay in help-seeking for colorectal cancer related symptoms

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Analytical review of reasons for delay in help-seeking for colorectal cancer related symptoms

Liu, Siu-kwong.; 劉兆廣. Liu, S. [劉兆廣]. (2009). Analytical review of reasons for delay in help-seeking for colorectal cancer related symptoms. (Thesis). University of Hong Kong, Pokfulam, Hong Kong SAR. Retrieved from http://dx.doi.org/10.5353/th_b4299734 2009

http://hdl.handle.net/10722/56941

The author retains all proprietary rights, (such as patent rights) and the right to use in future works.

ANALYTICAL REVIEW OF REASONS FOR DELAY IN HELP-SEEKING FOR COLORECTAL CANCER RELATED SYMPTOM

LIU SIU KWONG MPH PROJECT

THE UNIVERSITY OF HONG KONG 2009

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Abstract of thesis entitled

“Analytical review of reasons for delay in help-seeking for colorectal cancer symptoms” Submitted by

Liu Siu Kwong For the degree of Master of Public Health at The University of Hong Kong in August 2009

Delay in the presentation of symptoms for surgical opinion remains a crucial issue in colorectal cancer. The objective of the project is to review the current literature associated with help-seeking behavior for colorectal cancer symptoms. In the thesis, special consideration has been given to identify factors that hinder people in receiving medical care for colorectal cancer symptoms and to identify area for improvement in optimizing early diagnosis of colorectal cancer. Literatures published from January, 1988 to March, 2009 were searched in various databases such as such as Medline, Embase, Cancerlit, CINAHL, the Cochrane, PubMed and 24 studies were subjected to review. The result indicated that symptoms variable seems to be most significant

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determinants to seek help in colorectal cancer after comparing demographic variable, symptoms variable, cues to action and perceived benefit in selected studies. Majority of patients presenting with symptoms such as rectal bleeding and change in bowel habit are attributable to benign illness. This review suggests that if delay is to be reduced, recognition and understanding of the potential seriousness of those symptoms are much more important than patients‟ awareness of symptoms. Thus symptom appraisal approach should be adopted in public health intervention in order to emphasis the importance of an individual„s own evaluation of his or her symptom. As there was no study mentioned how the ethic and cultural factor affecting help seeking for colorectal cancer-related symptom, it is suggested that a questionnaire study could be designed in order to investigate seeking behavior among colorectal cancer locally in the future.

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ANALYTICAL REVIEW OF REASONS FOR DELAY IN HELP-SEEKING FOR COLORECTAL CANCER RELATED SYMPTOMS By Liu Siu Kwong B.Nurs H.K.U

A thesis submitted in partial fulfillment of the requirements for The Degree of Master of Public Health At The University of Hong Kong

August 2009

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Declaration

I declare that this thesis represents my own work, except where due acknowledgement is made, and that it has not been previously included in a thesis, dissertation or report submitted to this University or to any other institution for a degree, diploma or other qualifications.

Signed ………………………………………………………………... Liu Siu Kwong

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Acknowledgements

I would like to express my gratitude to all those who gave me the possibility to complete this project. I want to thank the Department of Community Medicine for giving me permission to commence this project. I am deeply indebted to my supervisor Dr Wendy Lam stimulating suggestions and encouragement helped me in all the time of the project.

My current colleagues from the Department of Surgery in Queen Mary Hospital supported me in my research work. I want to thank them for all their help, support, interest and valuable hints.

Especially, I would like to give my special thanks to my wife Deimos and my lovely son Hayden enabled me to complete this work. For my wife, her ongoing encouragement and support exists throughout this process. For my son, I want to say a loving thank you for his patience all those times when Daddy was “on the computer” or “at the library”. His cheerful smile always becomes motivation for me to work better.

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Contents Declaration ……………………………………………………………………… I Acknowledgements ……………………………………………………………… II Table of Contents ……………………………………………………………...... III List of Illustrations/Table/Figures ..................………………………………….. IV

Chapter 1 Introduction …………………………………………………………………1 Chapter 2 Method

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Chapter 3 Results

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Chapter 4 Discussion

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Chapter 5 Implications

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Chapter 6 Strength and Limitation

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Chapter 7 Conclusion

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References

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Illustrations

Figure Figure 1 Help Seeking Pattern in colorectal cancer …………………………..27 Table Table 1 Summary of 24 selected studies

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Chapter 1 Introduction Hong Kong is a city where western influences have deeply infiltrated into people‟s everyday lifestyles in contemporary history. Cancer has been a major cause of illness and the leading cause of death in Hong Kong (Cancer Registry, 2009). Alarmingly, incidence of colorectal cancer is increasing rapidly and quietly. While colorectal cancer is regarded as the second leading cause of deaths among cancer in Hong Kong for both men and women, the disease surpasses both breast and liver cancer in incidence, and is second after lung cancer in mortality. The incidence rate of colorectal cancer is comparable to western countries. Extrapolating from recent trends, it has been estimated that in merely 3 years, colorectal cancer could replace lung cancer as the leading cause of cancer mortalities in Hong Kong (Cancer Registry, 2009). Hong Kong people are particularly worried about colorectal cancer for two reasons because colorectal cancer mainly affects people aged 50 or above and its escalating significance in view of Hong Kong‟s aging population. Besides, an exceptionally high incidence of colorectal cancer was detected among its young population as compared to the world‟s database. There is an excess of patients, by up to fourfold, in the younger age group in Hong Kong as compared with Scotland and other Caucasian data (Sung et al., 2005).

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Of all colorectal cancers, 80% to 90% are sporadic and 10% to 20% are familial. The cause of sporadic colorectal cancer is multi-factorial while environmental factors playing a major role. It includes dietary, physical activity, overweight, smoking and drinking habit (Yuen et al., 1997). The nature of tumor, penetration into the bowel wall, and whether the cancer has spread to lymph nodes or other distant organs are the key determinants for the prognosis of colorectal cancer (Yuen et al., 1997). The 5-year survival rate varies in relation to stage at diagnosis with almost 90% for early cancer (Dukes A) to 15% for advanced tumors, which only palliative treatment is attainable (McArdle & Hole, 2002). By achieving the best possible result, early diagnosis and treatment for any type of cancer is rather critical. However, the clinical presentation of colorectal cancer is rather poorly defined and treacherous, especially where the tumor is localized in the right colon. The most frequent symptoms are per rectal bleeding, change in bowel habit, anemia, abdominal pain, weight loss and intestinal obstruction. Patient with rectal cancer tend to present with per rectal bleeding first and changes in frequency of evacuation accompanied with perianal pain or tenesmus. In contrast, cancer of colon becomes less apparent due to non-specific symptoms such as anemia, poor appetite, fatigue and abdominal pain. Surgical method which removes the entire tumor is believed to be the optimal treatment. The surgical options between patients with early

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diagnosis and those who experienced a delay can be significant Patients with early diagnosis require a less invasive laparoscopic surgery while advanced disease may require an emergency laparotomy procedure. Advanced cancer usually indicates distant metastasis and it makes the patient become unfit for less invasive laparoscopic surgery. Such patients will have higher risk of complications such as excessive bleeding and prolonged healing time for open surgery. The survival rate of patients with colorectal cancer did not improve much in the last two decades despite surgical and diagnostic methods were developed (Langenbach et al., 2003). Delay in seeking care has been observed and it has a significant impact on outcome of colorectal cancer so earlier treatment is recommended. Patient Delay Patient delay in colorectal cancer is defined as the period from the date of the onset of symptoms of colorectal cancer until treatment of the cancer (Korsgaard et al, 2006). There was no standardized definition for the period of patient delay so it was defined to have occurred if more than a 3 month period had lapsed from onset of symptom to the time of seeking care. The delay could be attributed to a variety of causes: the patient‟s delay in contacting a doctor (Patient Delay); the general practitioner‟s delay in correctly identifying the patient‟s symptoms (General Practitioner Delay); the hospital doctors„delay in diagnosing colorectal cancer which

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slows down the diagnostic and therapeutic procedure (System Delay) (Roncoroni et al., 1999). Based on the study by Safer (1979) and his colleagues, Anderson (1995) developed the “model of total patient delay”, which is consisted of six stages to explain how delay occur. Each stage is dichotomous and a move to the next stage is determined by decisions and interpretations in the previous stage. The interval between the instant that person firstly detects a suspicious symptom and deduces as illness is called “appraisal delay”, which means that a person has to interpret a symptom as a cancer or serious symptom. The second stage is called “illness delay” and it refers to making a choice between seeking medical care and self treating illness. Illness delay occurs when a person decides to postpone seeking medical advice. The third stage “behavioral delay” continues when the person realizes the symptom doesn‟t go away spontaneously and decides to seek medical advice. The fourth stage “scheduling delay “refers to the interval between making an appointment and the first medical attention. The final stage, “treatment delay”, refers to the interval between the moment when a person first initiate medical consultation and the starting of the treatment. One of the U.K national strategy is to narrow the delay in diagnosis in order to reduce cancer morbidity and mortality. Although lots of emphasize have been put on

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“organizational delays”, which happen between patient presenting first symptom to doctors and then subsequent diagnosis and treatment, “appraisal delay” contributes 60% of total delay and it is regarded as the most important process of seeking medical attention (Anderson et al., 1995). However, suspicious symptoms are not responded in the same way to all individuals (De Nooijer et al., 2001). „Contextual variables‟ (Facione, 1993) such as gender, marital status, and social economic status were related to patient delay. Moreover, it appears that many individuals delay for reasons that are more psychological in nature. There is substantial evidence for the existence of two principal, albeit contradictory, reasons given by patients who were asked why they delayed in seeking help. The first is given by the person who believed that their symptoms were not serious and suggested a rather contented attitude toward their symptoms. The second is given by the person who was concerned that their symptoms were serious, but who was then immobilized by fear, embarrassment, or denial, suggesting that avoidance was the prime psychological deterrent (Andersen et al., 1995; de Nooijer et al., 2001). Some people always visit their general practitioners with minor complaints, while others avoid visiting general practitioner even with obvious cancer symptoms. Dent et al (1990) reported almost one-third of the study sample experienced change in bowel habit; 16% of individual experienced per rectal bleeding in the last 6 months and almost 20% reported tenesmus, and 10% reported

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rectal pain on defecation. Patients are facing dilemma that bowel symptoms are common in the general population and often not recognized from those of colorectal cancer Help Seeking The relationship between symptom experience and help seeking behavior is rather complex. Help seeking is part of the learning process for everyone when people encountered unknown which is beyond their understanding of knowledge. Help-seeking behavior is greatly influenced by individual characteristics and environment setting. Help seeking is classified into two ways: adaptive and avoidant. Adaptive seeker pursue hints actively about the solution by discussing with others, or clarification of the paradox. They not only find the solution they have solicited but also build up the ability to drive off obstacles independently. On the contrary, an avoidant seeker means that a person avoids seeking for assistance even when he is aware of the needs. In order to determine how to promote early detection behaviors, it is essential to review the current literature associated with help-seeking behavior for colorectal cancer symptoms.

Project Aims The purpose of this paper is to analytically review the existing knowledge about

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why patients delay in help seeking for colorectal cancer symptoms. Specifically, this review paper sought to accomplish the following objectives: 1) To identify factors that hinder people in receiving medical care for colorectal cancer symptoms. 2) To identify area for improvement in optimizing early diagnosis of colorectal cancer.

Chapter 2 Methods The review is restricted to papers published in peer review journal from January, 1988 to March, 2009. Searching was done in various databases such as Medline, Embase, Cancerlit, CINAHL, the Cochrane, PubMed. Keywords such as colorectal cancer or gastrointestinal neoplasm, early diagnosis or patient delay or prognosis and help-seeking behavior were used in searching relevant articles. Exploration of references list in papers and usage of PubMed to identify relevant articles were used. Inclusion Criteria Qualitative and quantitative studies in English, that assessed the help-seeking experience of adult with diagnosis of colorectal cancer, were included. All journal articles concerning the evaluation of delaying help-seeking for colorectal cancer-related symptom are also included. Those studies which evaluated factors associated with delay interval between a patient first noticing a cancer symptom and presenting to primary care by general practitioners were included.

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Exclusion Criteria Those articles in non-English articles and those editorials and opinion letters were excluded. Those articles in Chinese were not searched due to time limitation and it was difficult to translate those terms into English and the meaning could be varied from the original. Since this review paper concentrated on “patient delay” in presenting colorectal cancer symptoms, studies regarding GP delay, diagnostic and system delay were also excluded. Moreover, this study focuses on factors influencing individuals with delay in seeking help with self-discovered colorectal symptoms. Hence, those studies focused on individuals’ health behaviour on uptake of colorectal cancer screening were excluded as screening targets individuals without any symptoms.

Chapter 3 Results The searching strategy identified 137 articles of which only 24 met the inclusion criteria and were subjected to detailed review. All were original articles. The characteristics of the included twenty-four studies are summarized in Table 1 For quantitative studies, four of them retrieved record by using retrospective method, thirteen of them used prospective observational method, two used cross-sectional. For qualitative studies, all four of them used qualitative interview as

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the method to retrieve information and one study used method combining with qualitative and quantitative method Nineteen of the included studies were carried out in Western Europe and UK while only one of them was carried out in Asia and the rest of them were done in USA and Australia. In 17 publications, (70%) the cancers were colorectal, in 1 only rectum was included, in three (12.5%) only colon cancers were included. Two studies also included cancers at other locations; this paper included only the subsets of colon and rectal cancers, provided that the results were analyzed independently of those at other locations. Two studies evaluated delayed factors on the colon and rectum separately Delay Intervals 20 studies (83%) reported length of delay, ranging from few hours to 1 year, either from patient recognition of symptoms to presentation or from presentation to practitioner referral. Six (25%) of them just described the period of delay but did not define how delay was being quantified. Eight studies reported delay interval in terms of mean while six of them reported in terms of median. The reporting style of delay interval pose a methodological issue as delay time tends to be more positively skewed, which may underestimate the percentage of delay, so median should be used to reflect central tendency. Moreover, variability was also noted on how to define the delay

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interval. The starting point was all defined as initial onset of symptom in all studies while the definition of end point varied. 16 (66%) of them defined delay interval starting from onset of symptom until diagnosis; 5 (20%) of them defined delay interval from onset of symptom until treatment. The remaining of them (14%) did not report any delay interval. Majority of studies obtained these data from abstraction of hospital records (66%) or community group (16%), the rest of them (16%) were population based. Help Seeking and Colorectal Cancer Symptom In order to facilitate the presentation of studies in systematical ways, gender, age, marital status and socio-economic status (SES) are examined under the heading of demographic variable; symptom interpretation, knowledge, emotional factors, are examined under the heading of symptom recognition. Social disclosure and social message were also examined. Lay referral, accessibility, financial status and other structural factors was examined under heading of utilization experience. Demographic variable Age Twenty studies examined the relationship between age and patient delay. There were four studies indicated that younger patient were more likely to have delay in help seeking (Mor et al., 1990; Kemppainen,1993; Mulchay et al., 1997; Langenbach

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et al., 2003). In contrast, four studies concluded that there was no relationship between patient age and patient delay (Funch., 1988; Majumdar., 1999; Mariscal et al., 2001; McCaffery et al., 2003). Gender Four studies indicated that males were more likely to delay in seeking help than female (Kemppainen.,1993; Young et al., 2000; Korsgaard et al., 2006; Hansen et al.,2008) while only one study indicated that female was more likely to delay (Cockburn et al., 2003). One Australia study indicated that double of male patients experienced than female during pre-diagnostic period while another study indicated that male delayed 40 days more than female to seek medical advice (Kemppainen., 1993). Again, there was no conclusive relationship between patient gender and patient delay as shown by six studies (Funch, 1988; Mo et al., 1990; Mulchay et al., 1997; Majumdar 1999; Mariscal et al., 2001; McCaffery et al., 2003). The reason of why male is more likely to delay was not well discussed in papers. Marital Status Two studies indicated that marital status was a potential factor to influence help seeking (Cockburn et al.,2003; Langenbach et al., 2003). The delay interval of married persons is halved comparing to those single, widowed and divorced persons

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(Langenbach et al., 2003) while another studies indicated that controversy result i.e married persons got longer delay (Cockburn et al.,2003) but the reason behind it was not discussed in detail. Socioeconomic Status (SES) Social class has been examined in two studies as the factors on delay in help seeking (Funch, 1988; Hansen et al., 2008). Two studies found that people with lower end of socioeconomically status and tended to experience longer delay (Funch, 1988; Hansen et al., 2008). Comorbidity Two studies illustrated that patients with chronic illness experienced a shorter delay in seeking healthcare (Mor et al., 1990; Mariscal et al., 2001). 50% of patients with chronic illness experienced no delay while those patients without history took 62 days to contact with health care (Mariscal et al., 2001).

Symptom Recognition Symptom Interpretation Non-specific symptoms Among twenty- five studies, eleven studies revealed that non-recognition of symptom severity as the contributing factor in delaying colorectal cancer (Mor et al., 1990; Harris et al., 1998; Roncoroni et al., 1999; Young, 2000; De Nooijer et al.,

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2001;Cockburn et al., 2003; McCaffery et al., 2003; Broughton et al., 2004;Oh et al., 2004; Robertson et al., 2004; Ristevdt et al., 2005). Those people who experienced non- specific symptoms such as weight loss and change in bowel habits had a higher tendency of delay (Mor et al., 1990; Cameiller-Brennan., 1999; Majumdar., 1999; McCaffery et al., 2003) than specific symptoms such as abdominal pain and rectal bleeding. Change of bowel habit was usually attributed as increased frequency of bowel movement or diarrhea (Broughton et al, 2004). Weight loss was not easily identified unless aggressive loss happened (Majumdar et al., 1999). Specific Symptoms Rectal bleeding was the most common symptom encountered but people reacted differently in the selected studies. People in two studies tried to adopt avoidant strategy to attribute rectal bleeding as other minor illness such as piles (Mor et al., 1990;Young et al., 2000; Bain et al.,2002; Ristevdt et al., 2005) or described as aging process. Mor (1990) reported that patients with rectal bleeding were more likely to delay than those who didn‟t report bleeding. Four studies indicated that initial symptom relating to rectal bleeding was more likely to stimulate individuals to seek medical advice rather than non-specific symptom such as change in bowel habit (de Nooijer et al, 2001, Mariscal et al., 2001; McCaffery et al, 2003; Robertson et al., 2004).

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One of the Spain study indicated that abdominal pain was the only predictor associated with shorter delay (Mariscal et al., 2001). When the frequency or intensity of symptoms become significant or even affect peoples‟ daily life, they sought help promptly (Funch.,1988; Mulchay et al.,1997; Cameiller-Brennan .,1999; Majumdar.,1999; Mariscal et al., 2001; Broughton et al.,2004; Robertson et al.,2004; Khattak et al.,2005). Thus reaction to the detection of symptoms seemed to be associated with the nature of the symptoms as well as the symptom progression which in turn influence help seeking behavior. Knowledge There were altogether four studies reporting a knowledge deficit affecting people in seeking medical care (De Nooijer et al., 2001; Mariscal et al., 2001; Cockburn et al., 2003; Ristevdt & Trinkhaus, 2005). Sufficient knowledge enables people to interpret symptom as cancer signal (De Nooijer et al., 2001), .People with lower level of awareness of colorectal disease had higher tendency to delay in seeking care (De Nooijer et al., 2001; Mariscal et al., 2001). McCaffery et al (2003) found that lower levels of education reported more negative views in terms of fear, anxiety and permission about the bowel cancer. While only one study (Mor et al., 1990) indicated that there was no relationship between delay interval and education level.

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Emotional Factors Seven studies mentioned that fear was indicative of cancer (Stebbing et al., 1995; Van der Molen, 2001; de Nooijer et al., 2001; Langenbach et al., 2003; McCaffery et al., 2003; Oh et al., 2004; Broughton et al., 2004) and made patients delay in seeking help. People were fear of investigations related to diagnosis of cancer and even avoided to read further information about colorectal cancer (Van der Molen, 2001; Langenbach et al, 2003); fear of powerlessness (McCaffery et al, 2003) and fear of consequence of treatment (Broughton et al., 2004). People, who were able to interpret symptoms as cancer signal, fear of cancer is incurable so they ignore it (De Noojier et al., 2001). Three studies revealed that patients delayed to seek help as they were embarrassed by exposure of sensitive body areas as well as fear of the invasive procedure during physical examination. (de Nooijer et al, 2001; Van der Molen, 2000; Cockburn et al., 2003). Embarrassment about the nature of symptoms related to rectum was the main reason for both men and women not discussing symptoms with others (de Nooijer et al, 2001). One study indicated that people with low self-efficacy tend to believe that the potential help givers i.e doctors will look down upon them and labeled them as neurotic, a hypochondriac or a time waster if they ask for help, and, therefore, they

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were reluctant to ask for help (Smith et al, 2005).

Social Disclosure and Social Message Social Disclosure Three studies mentioned that the influence by social group could alleviate the delay interval (de Nooijer et al, 2001;Broughton et al., 2004; Oh et al., 2004) while one study indicated there was the delay interval was irrelevant to the number of helpers in support network (Mor et al., 1990). Informal social network As mentioned by one UK study, patients got the bowel cancer information, mainly from their relatives and friends instead of media or leaflet, in which helped them to interpret their symptoms (Broughton et al., 2004). One Netherland study (de Nooijer et al, 2001) showed that nearly all patients discussed the symptoms with significant others and seemed to have shorter delay comparing to those who had not initially discussed with others. Formal social network None of the studies illustrated that formal social network could promote help seeking. Social Message Studies indicated knowing someone e.g friends or relatives who got colorectal

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cancer help individual to identify and interpret the presence of symptoms (Robertson et al., 2004).While another study indicated that the consequence on help seeking behavior by knowing someone who got cancer is varied from case to case (de Nooijer et al, 2001).

Utilization Experience Several utilization experiences have been discussed in the selected studies including life priority (Oh et al., 2004); accessibility (Bain et al., 2002; Robertson et al., 2004); financial constraint (Langenbach et al., 2003); lay referral (Robertson et al., 2004; Oh et al., 2004) and previous utilization experience (Oh et al., 2004). Life Priority People perceived that visiting a doctor as inconvenient or required much expense due to bad job situation (Oh et al, 2004) so they were less likely to seek help unless adverse life event occurred. Previous Utilization Experience Patients in one study indicated if they had visited hospital because of similar symptoms in the past, they tend to seek help earlier when additional symptom appeared (Oh et al, 2004). Moreover, people, who trusted the GP or health care system, expected the GP was able to solve the problem for them (de Nooijer et al, 2001) so they were more likely to seek help.

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Lay Referral Two studies indicated that the decision to seek medical help was determined by others such as son or friends (Robertson et al., 2004; Oh et al., 2004) instead of own decision. Half of the sample in one Italy study indicated that they went to see doctor only after relatives insisted on the need of medical visit (Roncoroni et al., 1999). Accessibility Data from one study indicated that people living in rural area had higher tendency to delay than urban area because rural people were more reluctance to seek help early until the symptom gone worse (Bain et al., 2002) while another study indicated that there was no difference on that (Robertson et al., 2004). For those rural people in Bain‟s (2002) study, who sought help in later stage, they requested less intensive treatment and had lower expectation of health care. Financial Status Langenbach et al (2003) illustrated that patients with additional private insurance had shorter delay rather than patients without insurance; while those patients mainly consisted of adult children and housewives, who had no income.

Chapter 4 Discussion The aim of this review is to explore colorectal cancer patients‟ help seeking

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behavior through analysis of qualitative and quantitative studies. Unlike breast, skin or testicular cancer which involved active detection behavior i.e actively performing particular actions such as breast self examination. Colorectal cancer requires people to use passive detection behavior by means of awareness of a cancer symptom without conscious action. Person need to detect a symptom, infer illness, decide to seek medical attention, visit a health care provider (De Nooijer et al., 2001). Decisions about whether to seek help involve weighing the psychological costs of asking for assistance against the benefits that might occur. The main theme of this review shows that symptom interpretation, fear and embarrassing of investigation are the factors influence help seeking in colorectal cancer. The synthesis of the review findings will be discussed below. Concerning with the key element of delay interval, there was a great variability in the unit of measurement and definition of delay interval among selected studies. The reporting style of delay interval poses a methodological issue as delay time tends to be more positively skewed, which may underestimate the percentage of delay, so median should be used to reflect central tendency. Delay interval should be clearly categorized into different staging e.g onset of symptom to diagnosis, diagnosis to treatment etc. By interpreting patient characteristics in selected studies, it allows people to

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identify which groups of patients are more likely to seek help and develop targeted interventions for them. It is believed that people with younger age, male, good past health and lower SES are more likely to experience delay in seeking help. In view of patients‟ age, young people are more likely to delay as older people are usually retired and they might consider rectal bleeding as a serious problem while a working person might be too busy to think about it due to life priority. This conclusion was supported by one selected study that retired persons were identified as are more likely to seek help than those working people (Hansen et al., 2008). However, there is no consensus in the selected studies what is the range of younger age. Adolescents tend to perceive help seeking as a threat to their developing autonomy, and in turn hold more negative attitudes toward seeking medical help. For comorbidity, the situation is more or less the same as people with chronic illness, their disability and social isolation intensify people to notice their colorectal symptoms and infer it as illness. Those people with good past health seek alternative explanation for their vague or non-specific symptoms because they are apparently fit, healthy or too young. For gender, previous researches have yielded mixed results and previous evidence showed that men more relied on internal cues such as biological changes, occurrence of adverse life event or failure in coping that cause psycho-physiological arousal while women relied more on external cues. For women to seek help seemed to

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be socially more acceptable than for men because men learnt at an early age that emotional expression was a sign of weakness. As a result, there was suggestion that men may be more likely than women to ignore colorectal cancer symptoms, thus, delay seeking appropriate medical care (Kemppainen, 1993). The attribution of illness to symptoms among male arose when the symptoms physically restrict their everyday life especially if affecting their work. This phenomenon was explained by Risberg (1996) and stated that female cancer patients sought help more quickly than men because women experienced distress significantly at all stages from onset of symptoms to medical attention. This review doesn‟t have a consensus between gender and appraisal delay. For SES, it was suggested that people with higher SES may have more rational health behavior, more likely to aware of their symptoms than low-SES people (Frederiksen et al., 2008). Once people become alert that their symptoms are related to cancer, they will be more likely to infer these as illness and seek medical care immediately. Symptom Recognition Symptom Interpretation Patients re-defined those symptoms regarding to benign diseases, self diagnosis and self treatment were the common theme across the studies. Accurate interpretation

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of symptoms is crucial to infer these as illness during appraisal process. Symptoms of colorectal cancer have both strong sensory signals (rectal bleeding, abdominal pain) and weak sensory signals (change in bowel habit, weight loss) There was evident variance regarding to the symptoms measured with rectal bleeding, abdominal pain change in bowel habit in this review. For weak sensory signal, people are more likely to attribute those non- specific symptoms such as change in bowel habit to other minor causes such as stomach upset, stress or diet, which is a less salient trigger for help seeking behavior. For strong sensory signal, rectal bleeding and abdominal pain was interpreted by people differently in our review. Mechanic (1982) stated that people usually distinguish trivial from serious symptoms on the basis of visibility, intensity, frequency and the extent to which they seek alternative interpretations. The presence of abdominal pain was mostly perceived as warning sign so people tended to seek help promptly. Many people usually associate rectal bleeding as piles or other benign bowel disease thus this may explain why people with rectal cancer delay more than colon cancer (Mulchay et al., 1997; Korsgaard et al., 2006). This causal attribution of symptoms has far-reaching consequence on health behavior and delay interval. Individuals recognize changes in their bodies but seek alternative explanation. In addition, new additional symptoms, symptoms affected daily, symptoms worsen or symptoms reached crisis point will lead to panic and trigger people to recognition of

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illness. Knowledge Sufficient knowledge is a pre-requisite for correct interpretation of symptoms. Sufficient knowledge enables people to interpret symptom as cancer signal and facilitate them to seek help promptly. Insufficient knowledge cause uncertainty and minimization of symptoms, which were associated with delayed help seeking for symptoms of bowel cancer (Cockburn et al., 2003) and rectal cancer (Ristevdt & Trinkhaus, 2005). Non-recognition of the seriousness of symptoms or lack of knowledge about the disease itself was believed as the major contributor to increase delay. Study done by McCaffery et al (2003) shown that increasing knowledge in colorectal cancer may encourage less negative attitude about the disease and thus reducing negative perception about the disease may in turn influence the decision to seek help promptly. However, knowledge about colorectal symptoms may not be translated into help seeking behavior due to perceptions of the ineffectiveness of current intervention. To conclude, there is apparent relationship between knowledge and help seeking behavior in this review. Influence of Emotion In line with previous review of help-seeking experience among cancer patients (Smith, 2005), patients commonly express fear of cancer, fear of embarrassment, fear

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of investigation and even denial after recognized symptoms. Fear is either an incentive to action or to deny, meaning that patients develop two different types of coping strategy i.e immediate help-seeking or denial and resulting in delay. The mechanism for coping with fear after discovery of suspicious symptoms is to either reduce the danger or reduce the fear. Reducing danger, which means effective remedy by visiting doctors, usually require long term effort to reduce fear. While reducing fear at once, which means ignorance or denial, require much short term effort. Dominant studies in this review indicated people experienced emotional factors especially fear but keen to tackle the symptoms with short term effort i.e ignorance or denial. Such great similar reaction among 24 papers was the main obstacle to seek help. Influence of Social Disclosure and Social Message Help-seeking is not a sole behavior of help-seekers. It needs the cooperation of helpers or help givers. The helper relationship, attitude, helpers‟ competence and social climate of setting are the determinants how do social interaction influencing in help seeking process (Turner et al., 2002). Informal network such as spouse, children and friends are the dominant members to hasten colorectal cancer patients‟ contact with providers (Roncoroni et al., 1999; Broughton et al., 2004; Oh et al., 2004). Patients‟ symptom perception is influenced by an individual‟s social context. The

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sanctioning of help seeking by family members lessens patients‟ fear of being labeled as time waster. A disclosure symptom with others is an important factor in prompt help seeking behavior (de Nooijer et al., 2001). Spouse is especially important during the sanctioning of help seeking as wives or husband often encourage, persuade or even take action on their behalf. Although this lay referral system may not always be correct, the availability of social disclosure was also a key factor in facilitating help-seeking, however, there is no apparent relationship shown in this review Utilization Experience After patients inferring their symptoms as illness, they moved on to the second stage and third stage (illness delay and behavioral delay) in the model of patient delay. Factors which influence utilization delay are more likely due to structural factors rather than behavioral factors. Several triggers have been identified in this review. The most common themes encountered among colorectal cancer in this review are financial constraint and accessibility. People are more willing to adopt “wait and see” approach to observe their symptoms in case of financial constraint. Ethic and Culture There was no study mentioned how the ethic and cultural factor affecting help seeking for colorectal cancer-related symptom among 24 studies so that comparative cultural evidence cannot be drawn. 80% of the included studies investigated help

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seeking in Western Europe and only one of them was done in Korea. The existence of comparative cultural evidence can expand the strength of weak ties notion beyond what have been previously understood. After comparing demographic variable, symptoms variable, cues to action and perceived benefit, symptoms variable seems to be most significant determinants to seek help in colorectal cancer. This may not be true as majority of the studies tended to focus on demographic variable and symptoms variables and only minority of the selected studies (20%) looked at the influence of cues to action and perceived benefit. To sum up, the pattern of help seeking in colorectal cancer is illustrated in figure 1.

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Figure 1: Help Seeking Pattern in colorectal cancer

Chapter 5 Implication This project reviewed current literature on help seeking behavior about colorectal

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cancer and revealed that non-recognition of symptom severity; inadequate knowledge; worry; embarrassment and fear were associated with appraisal delay (Facione et al., 1997; De Nooijer et al., 2001; Smith LK et al., 2005). Help seeking behavior is a dynamic process through which the person defines the problems, struggles with them and attempts to achieve a comfortable accommodation. Delay in seeking care is a generalized behavior but not only specific to cancer. People with hallucination may seek for alternative explanation such as stress initially and not infer it as a mental illness. Due to the differences in symptomatology associated with different cancer site, it is necessary to consider the specificity of different cancer. One important finding of this reviews focus on the complex relationship between individual behavior and presenting symptoms. Since majority of patients presenting with symptoms such as rectal bleeding and change in bowel habit are attributable to benign illness. This review suggests that if delay is to be reduced, recognition and understanding of the potential seriousness of those symptoms are much more important than patients‟ awareness of symptoms. Thus, considerable emphasis must be placed on highlighting the potentially significant nature of symptoms, despite their commonality. As delayed help seeking has detrimental consequence for the individual, community and the cost of health care, specific intervention should be emphasized in order to tackle this problem. Early detection of colorectal cancer could be attained in

29

two ways, one is done by medical health care provider, for example during a screening program or a medical check-up, or passive detection by individual for suspicious symptom, such as per rectal bleeding, change in bowel habit and abdominal pain. This review recommends the development of public health interventions that promote help-seeking aiming at people with lower SES because this review shows that they are less likely to be aware of their health. Firstly, education campaigns must detail the symptoms that are indicative of life-threatening condition and hence require medical attention. Intervention should adopt symptom appraisal approach which emphasis the importance of an individual„s own evaluation of his or her symptom. If public don‟t know how to evaluate suspicious symptoms accurately, our health care system will be overloaded by a large increase in help-seeking for benign symptoms and cause unnecessary fear due to false positive result. False alarm or false positive result could cause additional economic costs (Science Daily, July 20, 2007) and significant impact on different psychological dimension such as anxiety, behavioral impact, sense of dejection, impact on sleep, and sexuality as shown in one breast cancer survey (Science Daily, Dec. 30, 2004). Secondly, minimization of utilization delay is crucial and it could be achieved by affordable, available health care and good doctor-patient relationship. Financial constraint and life priority are

30

common problem in Hong Kong and restrict people to seek help unless symptoms go worse. Minimal waiting times and flexible consultation service could help people seek help for medical care more easily. A nurse led 24 hours telephone service (NHS direct line) was set up in UK to encourage those in need of medical attention and reassure those who don‟t need to visit doctor (Ayer et al, 2007 p73). Such method not only reduces unnecessary embarrassment but also help patients recognizing symptom accurately in shorter period. Being health care professionals, nurses should recommend the development of public health interventions that promote help-seeking by structuring media-based messages in content and delivery that speak to encourage individual to seek help promptly for self discovered symptoms. Thirdly, middle aged may respond better to public health messaging that attaches increased self-care behavior to their responsibilities as provider and care-taker, for their children. This approach acknowledges peoples‟ needs for reciprocity, i.e., to seek and receive help translates into being able to give to those more vulnerable, and the preservation of status.

Chapter 6 Strength and Limitation One of the limitations of this project is that only studies published in English were included. This could increase the potential bias by excluding papers published in

31

non-English language journals, which may be more likely show negative results (Egger et al, 1997). Secondly, grey literature including unpublished data, book and thesis could be missed as they are not typically accessed via electronic searching. Thirdly limitation of this review possibly is selection bias, which is major threat to a valid review, subjected on how researcher to include and exclude relevant articles. If irrelevant papers are included in the review, it will possibly have different conclusion. Lastly, lots of included studies consists data with retrospective data about the patient delay period. Patients were recruited after diagnosis of colorectal cancer. Some patients confessed that they did not remember all aspects of the patient delay period because it was a hard time for them after the diagnosis or even influenced their lives (de Nooijer et al, 2001). The message of being diagnosed with cancer caused emotional crisis thus affected the accuracy of recall history. Therefore the direction of effects cannot be deduced and internal validity was threatened. Further intervention studies and prospective studies are necessary to test the causal relationship fully. One of the possible ways to facilitate recall is to let patients relate their symptom discovery relative to important events such as birthday, festival or holiday (Burgess et al, 2001) or try to interview with patients on presentation of symptoms (Lam et al., 2008).

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Chapter 7 Conclusion Through means of an analytical literature review, current knowledge on the help-seeking behavior of colorectal cancer were identified and synthesized. One principle behind reforming cancer service is that care should be patient oriented but there is lacking of evidence about reason why patients delay in seeking help. By addressing the reasons in delaying medical care on colorectal cancer, we could identify those people with high risk group and provide prompt assistance to those in need. Increase public awareness of warning symptoms and continued efforts in improving health care access may prevent unnecessary delay in the care of colorectal cancer patients. Since there is no study yet to explore help seeking behavior among colorectal cancer patients among Chinese, oversea experiences provide valuable insight for substantial planning for local cancer services. It is believed that Chinese have a distinct health belief that affects health seeking behavior in comparison to other western population (Chen, 2001). Chinese endorse higher traditional values and tend to consider having a harmonious family system more important than individual freedom. Thus they are less likely to disclose disharmonious issue to family members. Chinese hierarchical family structure and lack of communication among family members affect the way Chinese perceive their problems and their attitude toward

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utilization of health facilities (Li, 1988). In some Asian and middle Eastern culture, the family network regulates health decision making and information exchange for the patient (Thompson et al, 2003). It is suggested that a questionnaire study could be designed in order to investigate seeking behavior among colorectal cancer locally in the future.

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Table 1: Summary of 24 selected studies

Author

Location

Study type

Cancer site

Mean or Sample size median of delay period

Definition of delay (From initial onset of

Factor increase delay

Factors decrease Factors showed delay no difference in delay

symptom until diagnosis or until treatment) Funch (1988)

USA

Vineis et al

Italy

(1993)

Mor et al (1990)

Prospective Colorectal Interview (Hospital based) ( 1 year period) Prospective observational (Hospital based)

USA

Prospective interview (Population based)

Colon

103 days (median)

294

Until Diagnosis

-High SES Age, Gender -Severe & unusual symptom

22 days

330(181

Until Diagnosis

Higher education

(mean)

men+149 women)

Colorectal 36.5% longer than 3 months

625

level

Until Diagnosis Non-recognition of symptom severity-rectal bleeding and change in bowel

comorbidity

Social network Gender, marital status, education, SES

43

habit Younger, Kemppainen Finland Retrospective Colorectal et al (1993) (Hospital record)

82.8 days (mean)

178

Until Diagnosis

Younger age Gender-male

Stebbing et al

61 (mean)

89

Until Diagnosis

Patients'

U.K

(1995)

Retrospective

Colon

(Hospital based)

ignorance fear

Mulchay et al Ireland Prospective Colorectal (1997) (Hospital based)

1 month

777

Until Treatment

Younger people

Intestine obstruction

Gender

Site-rectum Harris et al (1998)

U.K

Prospective Colorectal (Hospital based) (2 year)

15 months (median)

141

Until Diagnosis Non-recognition of symptom severity

Majumdar (1999)

USA

Retrospective Colorectal (Hospital based)

14 weeks

194

Until diagnosis

Weight loss

Intestine obstruction

Roncoroni et al (1999)

Italy

Until treatment

Non-recognition of symptom

Social group influence

Prospective Observational

Colorectal

(Hospital Based) (2.5years

10.8 weeks 100 (54 (mean) men and 46 women)

severity

period) Young et al

Australia

Prospective

Colorectal

>3 months 100 (52men Until diagnosis Non-recognition

Pain, bleeding

Gender, age and cancer site

44

(2000)

observational (1 year)

and 48 women)

of symptom severity

(Hospital based) Van der Molen, 2000

U.K

De Nooijer J, Nether-la L. L., De Vries nd H. (2001)

Gender-male

Qualitative Cancer (2 1 month to 1 interview is year (Cancer colorectal Resource centre) cancer) Qualitative interview (Regional

Colon

Bain et al (2002)

Spain

Scotland

cancer

Cohort (Hospital based)

Large bowel

59 days (median)

(2-Year Period)

cancer

98 days (mean)

Qualitative interview

Colorectal

Not specified

(Hospital based)

Until Diagnosis Fear-embarrass ment Personal experience

Few hours to 23 (6 of Until Diagnosis -Non-recognitio 10 months them) are n of symptom colon severity

patients group)

Mariscal et al (2001)

6 (3 men and 3 women)

158

Trust of GP Fear

Gender

Comorbidity -Symptom with

Age, sex

-Knowledge -Cancer Site-colon Until Diagnosis

-Higher education

rectal bleeding & Pain Multiple symptom 95 (32 for Not Specified focus group and 65 for interview)

-Rural area -Symptom denial

45

Cockburn et Australia Cross-sectional Colorectal al (2003) (community

Not specified

1332

Until Diagnosis

based)

Lack of knowledge-

Higher education level

Non-recognition Higher perception of symptom in risk severity -Self diagnosis Sex-female married

Langenbach Germany Prospective et al (2003) Observational

Colon and rectum

(hospital based)

McCaffery et al (2003)

U.K

Prospective (Population

Mean: 149days

70

Until Treatment

(colon) 224 days (rectum ) Colorectal

Not specified

-Fear -Symptom

-Health insurance -Married

denial -Younger adult, low income 1637

Not Specified

based)

Presenting symptom-

age, sex,

Lack of awareness -Negative meaning toward cancer

Oh et al (2004)

Korea

Qualitative and Cancer Quantitative (including (Hospital based) colorectal)

Not specified

29+165

Not Specified

-Barrier to visit doctor -Fear

Social group influence

46

-Non-recognitio n of symptom severity -Experience of visiting doctor Broughton et al (2004)

U.K

Qualitative interview

Colorectal 1 month – 1 year

49

Until Diagnosis Ignorant of the -Severe & unusual symptoms symptom

(Hospital Based)

Robertson et

U.K

al, (2004)

Retrospective

Colorectal

(Community based)

138 days

1223

(mean)

Khattak et al (2005)

U.K

Prospective Colorectal 30 (hospital based) days(median)

Ristevdt et al (2005)

USA

Retrospective (hospital based)

Rectal

14 weeks (median)

101 120 (48 female &72 male)

(rectal bleeding and change in bowel habit)

-Social group influence

Until

-Non-specific

-Sex-men,

No difference in

Treatment

symptom, -anxiety, depression or benign bowel disease

-Multiple symptoms

urban and rural area

Until Diagnosis Until Diagnosis

Severe & unusual symptom -

Lack of knowledge

Non-recognition of symptom severity -Attributable to

47

hemorrhoid Korsgaard et Denmark al (2006)

Hansen et al Denmark (2008)

Prospective

Colorectal

observational (Population based) Cohort (Population based) ( 1 year Period)

Median:

733

116 days (colon) vs 134 days(rectum) Colorectal

21 days (median)

254

Until

Sex –men

-Tumor site –colon

Treatment

(rectum)

-Sex-men (colon)

Until Diagnosis

-Sex

Retired people

(male have longer delay)

Higher education Higher SES

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