Testicular cancer article

When patients delay seeking medical attention after noticing symptoms of cancer there may be consequences in terms of the eventual staging of the disease at diagnosis, its prognosis and their survival. This review focuses on the psychosocial factors influencing help-seeking behaviour, hoping to draw lessons for testicular cancer in particular. Although the majority of studies have focussed on breast cancer, there is increased attention on other cancers including testicular cancer. This review outlines the methodology and terminology of "patient delay" and some of its consequences, before considering the range of influences of potential relevance to testicular cancer from a wide range of studies. It makes specific recommendations concerning the measurement of delay and methodology generally. Both psychological factors such as symptom interpretation, denial, avoidance, and distress as well as social factors are highlighted when studying the process by which men come to consult physicians.

Keywords: men, help-seeking behaviour, testicular cancer, patient delay, physicians

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Although commonly considered a single disease, cancer is a term that is used to describe more than two hundred different diseases (Nezu, Nezu, Friedman, Faddis, & Houts, 1998). The most common cancers in men are lung and skin cancers (accounting for more than a third of the cases), and in women breast and skin cancers account for a similar proportion of cases (Rees, Goodman, & Bullimore, 1993). Rees et al. (1993) state that over their lifespan approximately three out of 10 people will develop cancer and two thirds of these will die as a result of the disease (or one in five of the population). It is a disease that generally affects an older age group with 75% of cancers registered in people over the age of 60. Although these aspects inform lay perceptions of cancer in general, testicular cancer does not fit the "general picture," occurring as it does in younger men with a high survival rate when treated appropriately. However, one should note the significant gap between men's and women's attendance at health centres, with men attending less often (Watson, 2000), and that men suffer increased mortality. The Department of Health and Human Services (Courtenay, 2000) noted that in the United States men's death rates for cancer are one and a half times greater than for women. These two factors have led to the common adage in health literature that "women are sicker, but men die quicker" (Lahelma, Martikainen, Rahkonen, & Silventoinen, 1999, p. 7).

The United Kingdom census (Quinn, Babb, Brock, Kirby, & Jones, 2001) identified around 1,400 cases of testicular cancer in 1997, forming just over 1% of all male cancer. Incidence was highest (13 per 100,000) in 30-34 year olds, and more than half of all cases were under 35. It appears that the incidence of testicular cancer is increasing in the western world (Chilvers, Saunders, Bliss, Nicholls, & Horwich, 1989; Dearnaley, Huddart, & Horwich, 2001). However, the prognosis for testicular cancer has steadily improved, and it is estimated (Gascoigne & Whitear, 1999) that deaths in England and Wales fell by 40% between the late 1970s and 1980s. This is probably due to improved detection and treatment, the introduction of serum markers, and the use of chemotherapy since the mid- 1970s. However, one review of epidemiological and histological evidence across several regions in Europe and Asia (Forman &Moller, 1994) suggested that both the increase and variability in incidence point to environmental influences such as environmental estrogenic compounds. Although the cause of testicular cancer is unknown, intra-organismic suggestions include genetic factors, undescended testicles, and infantile hernia (Dearnaley et al., 2001).

Several decades of cancer research have focused on what have become known as "patient delay" and the factors involved in the time between first noticing symptoms and first seeking medical help. Why study patient delay in cancer, and testicular cancer in particular? When diagnosed before invasion beyond the testicular tissues, there is a five-year survival rate of more than 95% (Wardle et al., 1994). However, this study also found that 50% of cases present once spreading has occurred and that this is associated with a lower survival rate. Consonant with this, Rosella (1994) relates the fact that half of men present for medical attention and are diagnosed once the disease has spread further than the testicles, epididymis, and spermatic cord due to "delay behaviour" and to the "extremely rapid growth of testicular tumours" (p. 667). Though possibly not representative of other countries, one Turkish study (Toklu, Ozen, Sahin, Rastadoskouee, & Erdem, 1999) found total delay averaged 23 weeks. Half of the 145 patients presented with scrotal pain, but neither this nor diagnostic delay, income, or education was associated with staging.

Factors affecting delay include not only medical but also psychological and social influences such as personality, attitudes to health and the body, gender, and race. We examine the concept of patient delay and the results of a wide range of studies of psychosocial factors so as to highlight implications for the study of testicular cancer.

PATIENT DELAY

The concept of delay has long been considered an important issue in oncology and is most often divided into two categories: "patient delay" and "provider delay" (Abdel-Fattah et al., 1999; Burgess, Ramirez, Richards, & Love, 1998; Caplan & Helzlsouer, 1992). A third subcategory of "provider delay" has also been defined as delay following referral to hospital (Carter & Winslet, 1998) and may be further separated into primary care delay and secondary care delay. This paper is concerned with the first issue, namely the time taken from the first detection of symptoms by the patient to the point at which medical help is sought. "Patient delay" is the common terminology used in the literature to describe this phenomenon. However, Worden and Weisman (1975) argued that the concept of delay has a tendency to assign blame and negligence to the patient and that in so doing there is a danger that the complexities involved in the process (including the characteristics of differing cancers and psychosocial factors) are not given proper significance and understanding. They argued for the term delay to be replaced by the less loaded term of "lag time." Despite the publication of this article 25 years ago, patient delay remains the terminology most used, and so we have retained it despite its weaknesses. As well as implying negligence by patients, the term delay also implies an imposed boundary below which is an "acceptable" time limit for seeking help and above which it is "unacceptable." Clearly the definition and measurement of delay are critical to any conclusions that can be drawn.

DEFINING AND MEASURING DELAY