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Studying Help-Seeking for Testicular Cancer:
Some Lessons from the Literature (Part 2)
OLIVER J. MASON
University College, London
KATE STRAUSS
Kidderminster Hospital
Worcestershire, United Kingdom
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
A
lthough 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
Correspondence concerning this article should be sent to Oliver Mason, Sub-department of Clinical
Health Psychology, University College London, London, England WC1N 3BG. Electronic mail:
[email protected].
International Journal of Men's Health, Vol. 3, No. 2, Summer 2004, 111-127.
© 2004 by the Men's Studies Press, LLC. All rights reserved.
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MASON and STRAUSS
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.1
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
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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” (AbdelFattah 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
The majority of studies have determined patient delay as the time between first
noticing symptoms and first face-to-face consultation with a medical professional
(Burgess et al., 1998; Mansson et al., 1993; Nosarti et al., 2000; Styra, Sakinofsky,
Mahoney, Colapinto, & Currie, 1993). These studies therefore include in their estimates of patient delay not only the time taken by patients to seek medical attention,
but also the time period between first contact of the healthcare system (the arrangement of an appointment) to first face-to-face contact (actual consultation). However,
any delay between the arrangement of an appointment and first consultation is better
considered as system delay and confounds estimates of true patient delay when waitlist times are variable. A minority of other studies have defined delay as the time
between first noticing symptoms and first contact with the healthcare system (Lauver, Coyle, & Panchmatia, 1995; Lauver & Tak, 1995), thereby excluding any time
period between first contact and first consultation. Clearly a model of how delay
arises is useful in studying what is undoubtedly not a unitary phenomenon. Andersen and colleagues’ model of total patient delay (Andersen & Cacioppo, 1995)
attempts to describe several stages of the prediagnostic period of general application
to a variety of physical disorders (see Figure 1). Each stage is dichotomous, and a
move to the next stage is determined by decisions and interpretations in the previous
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stage. The period following detection of an unexplained symptom but before inference of illness is called appraisal delay. The second period of illness delay involves
making a choice between seeking medical attention and self-treating the illness.
When the person realizes the symptom does not disappear spontaneously and
decides to seek medical help, he moves into a phase of behavioral delay that concludes when he makes an appointment. Finally, scheduling delay occurs when the
appointment does not follow soon after its arrangement. This may be due to the
medical specialist (when it is impossible to make an appointment within a certain
time) or to the patient (when it takes a while before a convenient time for the patient
occurs). Andersen and Cacioppo (1995) found that the delay intervals were independent of one another and that appraisal delay constituted at least 60% of the total for
women with breast cancer or gynecological tumors.
Detects
unexplained
sign(s) and/or
symptom(s)
Yes
Appraisal
Delay
Infers illness
No
Yes
No
Decides to seek
Medical attention
No
Acts on decision
by making an
appointment
No
First receives
medical attention
Figure 1. Andersen et al.’s model of patient delay.
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Illness
Delay
Yes
Behavioural
Delay
Yes
Scheduling
Delay
Yes
STUDYING HELP-SEEKING
In some studies delay has been considered a continuous variable (usually in
days) without an explicit cut-off point between participants considered as “delayers”
or “nondelayers.” While others use a cut-off to separate discrete groups of “delayers” and “nondelayers,” there seems to be little consensus within the literature as to
what constitutes delay. The definitions of delay used by different studies ranged
between a time period of one week or more (Colbert, 1994) to six months or more
(Styra et al., 1993). Despite the lack of any real consensus on this issue, many
authors consider three months as the rule of thumb for the definition of a lengthy
delay period that at least facilitates comparison. Mor, Masterson-Allen, Goldberg,
Guadagnoli, and Wool (1990) studied three different kinds of cancer patients—
newly diagnosed lung, breast, and colorectal patients. Their rationale for a threemonth cut-off point was based on two older papers: Pack and Gallo (1938) seem to
have set a standard for this type of research by defining delay as a wait by the
patient of three months and over. Antonovsky and Hartman (1974), in their review
on delay and the detection of cancer, argued that three months was reasonable given
their conclusion that 35-50% of cancer patients wait more than three months before
seeking help. These arguments for a three-month cut-off point have been used in
other recent studies of breast cancer (Burgess, Ramirez, Richards, & Love, 1998;
Burgess, Ramirez, Smith, & Richards, 2000; Faccione & Dodd, 1995). Burgess et al.
(2000) based their rationale on an argument that previous studies have shown that
approximately one-fifth of women had waited for three months or more prior to
seeking help. However, it is not clear whether this or other cut-off points would be
appropriate for testicular cancer, and at least initially we would recommend treating
delay as a continuous variable with no absolute time limit applied.
A further issue arises when studies include individuals who have self-discovered symptoms alongside those who have had symptoms recognised through other
means. Faccione and Dodd (1995) in their study on women’s help-seeking narratives
for breast cancer included not only women who had self-discovered symptoms but
also women who had symptoms discovered through routine mammographies and
breast examinations by physicians. Quantitative studies also tend to confound these
pathways to healthcare: Keinan, Carmil, and Reick’s (1991) sample of 62 women
seeking medical attention for potential breast cancer included 10 who had their lump
discovered by a doctor during a routine checkup. As currently there is no routine
screening for testicular cancer, self-discovery constitutes the sizeable majority of
individuals with as yet unknown consequences in terms of delay. Rates of routine
testicular self-examination (TSE) are unknown but probably negligible since health
education in this arena is sparse. Indeed, evidence about just how self-discovery of
symptoms comes about is lacking.
Delay is usually determined through participant self-report, medical records, or a
combination of both. Diclemente and Temoshok (1983) have noted that many articles
neglect to state exactly how delay is established with individuals who self-report and
what questions are asked to determine this. Different phraseology will elicit different
responses. The use of language is clearly important, as this is a sensitive area of
enquiry. When delay is unduly emphasised, participants can feel judged and may
underreport time taken in seeking medical help (Worden & Weisman, 1975). Just
such a fear is very relevant to a cancer, and testicular cancer is a case in point, where
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embarrassment and stigma are commonly an issue, and even wholesale denial may
have operated for a considerable time. Any potential evaluation apprehension
(McBurney, 1998) should be reduced by ensuring the absence of implied judgement
or expectation (Nosarti et al., 2000), though this is the exception rather than the rule.
The objectivity of medical records has also been called into question (Diclemente &
Temoshok, 1983) since delay is not systematically recorded and there is usually no
explanation of how it has been determined from the available evidence.
Some studies have acknowledged the difficulty in accurately determining delay
and have sought to overcome this by the use of guided recall in face-to-face interviews (Lauver, 1994; Lauver & Tak, 1995) where care has been taken to improve
accuracy by the use of memory cues. However, this dedication to obtaining an accurate estimation of delay is again the exception rather than the rule but is probably the
only reliable way to determine delay in testicular cancer.
Our own experience when interviewing is that considerable sensitivity and
some rapport are required to obtain accurate information—something questionnaire
measures may simply not achieve.
DELAY AND PROGNOSIS
Delay in seeking help for cancer symptoms has been shown to be important in terms
of the staging of the disease at diagnosis and also survival rates. Several studies have
found patient delay in breast cancer to associate with advanced disease staging at
diagnosis (Lauver & Ho, 1993) and to contribute to increased mortality (see
Richards, Westcombe, Love, Littlejohns, & Ramirez, 1999, for review). Others have
found that patient delay has been associated with increased tumour size (Neave,
Mason, & Kay, 1990; Rossi et al., 1990). Keinen, Carmil, and Reick (1991/1992)
reported that there is a unanimous agreement among professionals of the importance
of detecting breast cancer in its early stages and that this significantly enhances
recovery. The largest meta-analysis (Richards et al., 1999) to date of more than one
hundred thousand breast cancer patients concluded that delays of more than three
months were significantly associated with lower survival and more advanced stage.
Nosarti et al. (2000) also noted the need for public policy to encourage early detection to ensure early treatment and improve outcome. A similar picture is found with
cancers other than breast cancer, though the evidence is sparser. Friedman et al.
(1994) in their study on skin cancer suggest that differences in survival rates among
different ethnic groups may be related to differences in the time taken to seek help.
Studies that have sought to examine the relationship between delay behaviour,
staging of the disease, and survival in testicular cancer have demonstrated more
mixed results. One large-scale study of 352 men (Hernes, Harstad, & Fossa, 1996)
conducted during three time periods over a time span of 12 years, found that patient
delay of less than 16 weeks in men with Seminoma-type tumours was correlated
with the incidence of stage I disease and that in all patients (both Teratoma-type and
Seminoma-type) patient delay of three months or more was significantly correlated
with a decreased five-year survival rate. Tavolini, Zuliani, Norcen, Dal Moro,
Abatangelo, and Oliva (1999) found greater delay to be associated with more
advanced staging in nonseminomas also. This and similar evidence suggests that it is
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important and worthwhile to make attempts to shorten both patient delay and doctor
delay by raising awareness and through educational programs. Hernes et al. (1996)
further found that during that 12-year period there had been no significant reduction
in patient delay or doctor delay, suggesting that there remains a lack of knowledge
of testicular cancer in young men and primary care doctors. By way of exception,
Chilvers et al. (1989) also found that shorter patient delay was correlated with earlier
staging of the disease, but interestingly found that there was an inverse relationship
between patient delay and relapse-free survival. Importantly, they propose that this
is related to the fact that more aggressive, faster-growing tumours are more likely to
result in symptoms that would lead men to seek medical attention sooner rather than
less aggressive, slower-growing tumours. They still therefore conclude that seeking
early medical attention for any testicular changes is essential and that their results do
not invalidate this message. The findings that men with earlier staging have sought
medical help sooner has also been supported by Bosl et al. (1981) and Thornhill,
Fennelly, Kelly, Walsh, and Fitzpatrick (1987). In contrast, Fossa et al. (1981) found
that there were no negative effects of delay either in terms of staging or survival, and
Thornhill et al. (1987) found no relationship between delay and survival. Although
the exact nature of the relationship between delay, disease staging, and survival
remains unclear, the consensus is that men should present with testicular changes as
early as possible.
In conclusion, most studies support the urgency of early detection in various
cancers, including skin cancer (Henrikkus, Girgis, Redman, & Sanden-Fisher,
1991), gastric cancer (Zilling, Walther, & Ahren, 1990), colorectal cancer (Dent et
al, 1990), chest cancer (Koyi, Hillerdal, & Brandén, 2002), and testicular cancer
(Chapple, Ziebland, & McPherson, 2004; Gascoigne, Mason, & Roberts, 1999;
Sanden & Eriksson, 2000).
EMPIRICAL STUDIES OF PSYCHOSOCIAL INFLUENCES
The literature on psychosocial influences on delay has, in the main, been related to
women and breast cancer symptoms, the past decade seeing three major reviews in the
field of breast cancer and delay (Caplan & Helzlsouer, 1992; Faccione, 1993;
Ramirez, 1999). However, there are some exceptions to the breast cancer literature
including studies on those who have been diagnosed with bladder cancer (Mansson,
Anderson, & Colleen, 1993), brain tumours (Salander, Bergenheim, Hamberg, & Henriksson, 1999), testicular cancer (Chapple et al., 2004; Gascoigne et al., 1999; Sanden
& Eriksson, 2000), and a range of different cancers (Chakravorty, Chakravorty, Patel,
DeSouza, & Doongaji, 1993; Mor et al., 1990). In addition, there have been studies on
help-seeking and cancer symptoms prior to diagnosis, including rectal bleeding (Dent
et al., 1990), signs of melanoma (Hennrikus et al., 1991) and lower urinary tract symptoms (Hunter & Berra-Unamuno, 1997). Though some aspects of the large literature
on breast cancer are undoubtedly relevant, the obvious sex and age differences
involved mean that psychosocial influences probably differ to those with testicular
cancer. In particular, younger males might be expected to have less specific knowledge and different attitudes and beliefs about health, illness, and mortality, though the
impact of these on the health behaviour of young men is largely unknown.
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Several types of psychosocial factors have received the lion’s share of empirical
attention that might broadly be classified as cognitive, affective, and social, though
these are understandably related. Cognitive factors include health locus of control
(“Is my health under my control?”), expectations of help-seeking outcome, the perceived value of seeking help, interpretations of symptoms, and beliefs with regard to
susceptibility to cancer. Affective factors include anxiety, depression, anger, and
optimism. Finally, a wide range of social factors have been studied, most notably the
impact of perceived social norms and social support as well as race and socioeconomic status. Although breast cancer has been the main focus in this research area,
some studies have included other cancers either by combining across several or
examining a single disease site. We consider, in turn, some of the implications from
questionnaire and interview-based studies of breast cancer and then of other cancers.
Finally, we turn to testicular cancer, where the evidence so far is largely qualitative.
BREAST CANCER STUDIES
As there are no studies specific to testicular cancer using psychometric assessments,
we have turned to the extensive literature on other cancers, most notably breast cancer. Some of the most extensive studies of breast cancer have been conducted by
Lauver and colleagues; in particular, they have developed several measures for use
at first presentation (Lauver, 1994; Lauver & Ho, 1993; Lauver & Tak, 1995)—
something lacking for male cancers. For instance, Lauver and Ho (1993) found that
longer delay was significantly associated with less habitual general healthcare
behaviour and with having no identified practitioner. Greater anxiety was associated
with less delay only for women who had no identified practitioner—a feature that is
undoubtedly even more frequent for younger men. African-American women,
Latino women, younger women, and those with lower occupational status also
tended to have longer delays. Culture and race are highly pertinent and sensitive
issues in the study of testicular cancer, too, though they may well operate differently
in younger men.
In one of the largest studies to date, Nosarti et al. (2000) interviewed 692
women presenting with symptoms to a breast clinic to determine delay, the reasons
for it, presenting symptoms, mammogram histories, previous breast problems, and
beliefs and attitudes toward cancer. Alongside many breast cancer specific findings,
“long delay” (defined as waiting more than 27 days to seek medical help) was associated with the belief that symptoms were not serious, poor health awareness, fear of
a cancer diagnosis, and higher levels of psychiatric morbidity. Fear and anxiety
seem both able to motivate presentation for some (Lauver & Ho, 1993) and cause
delay for others (Nosarti et al., 2000).
Illustrating some potentially relevant standardised measures, Keinan et al.
(1991) looked at the role of personality (health locus of control, hopelessness,
repression-sensitisation, and trait anxiety) and behaviour patterns (body awareness)
in predicting women’s delay following the discovery of a breast lump. They found
no associations between the personality variables and delay, although lower body
awareness did correlate with longer delay. Although this may be causal, it might
also be that body awareness had increased in some women since diagnosis, and
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direction of influence is a general issue in cross-sectional studies. Styra et al. (1993)
were also interested in the concept of denial and how this affected presentation in
those with breast lumps. Problem “tacklers” and problem “avoiders” were identified
through the use of the Problem-Solving Interview (PSI), through which individuals
were also classified as “identifiers” or “nonidentifiers” of a breast lump as a problem. However, there was no relationship between delay and identification of the
breast lump as a problem, nor between depression/psychiatric morbidity and identification. Although a patient’s style of tackling health problems may be relevant, the
evidence remains equivocal, and measures designed for general use may miss the
relevance of affect and denial when specifically focussed on the symptoms of a specific potential cancer. A clear recommendation to emerge from the work on breast
cancer is the need for the development of measures specific to the disease and
patients themselves. These tend to produce a higher proportion of significant findings that are of greater relevance to the specific presentation of the illness.
Richer themes can sometimes be better identified by interviews than the more
restrictive questionnaire studies: Lauver et al. (1995) interviewed 138 women prediagnosis using open-ended questions to elicit reasons for and barriers to seeking
care. Themes were established based on the interviews and then each interview
examined to determine absence or presence of those themes. Half of responders
indicated that there were no barriers, and these were significantly less likely to
delay. Barriers included previous commitments, limited finance/insurance, fear,
transportation problems, and lack of knowledge in terms of accessing services. Reasons women gave for seeking care included seeking consultation for physical symptoms, obtaining a diagnosis, addressing concerns or worries, dealing with risk of
cancer, external influences, seeking early detection, and receiving treatment. Few if
any of these are specific to breast cancer and may well apply in oncology generally.
However, as we have already seen, many factors may be more specific to the
symptomatology concerned. One recent large-scale study (Meechan, Collins, & Pertrie, 2003) examined the role of both symptoms and related emotional state in 85
women referred to a specialist breast clinic prior to their clinic appointment. Unsurprisingly, women with an identifiable breast lump and greater distress about their
symptoms delayed for a significantly shorter period than those without. The nature of
symptoms is clearly important, and the differences between an acutely presenting serious symptom such as bleeding and a less salient one are illustrated by a study of careseeking for signs of melanoma (Henrikkus et al., 1991). In this context, no relationship
was found between delay and the experience of different or more numerous symptoms. The three top reasons given for not seeking help included thinking the symptom
was not serious or that it would clear up in half of cases, having no time (11%), and
deciding to wait and see (10%). The majority of participants believed that their susceptibility to melanoma at some point in their life was low. Many of these factors are
shared with testicular cancer depending on the form of symptoms experienced.
Burgess et al. (1998) conducted semi-structured interviews with 185 breast cancer patients following diagnosis. Those who delayed reported significantly less fear
on the discovery of their symptoms, were less likely to have immediately disclosed
their symptoms to another, and were more likely to have been prompted by another
to finally seek help. In terms of immediate disclosure with regard to symptoms,
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women living with partners were more likely to disclose immediately. As the previous paper demonstrates [see this issue: “Testicular Cancer: Passage Through the
Help-Seeking Process for a Cohort of U.K. Men (Part 1)”], the role of partners is
frequently a crucial one with respect to a patient’s response to testicular changes,
suggesting that in this respect testicular cancer patients may resemble breast cancer
patients.
Mirroring the disparities of psychometric results, other interview results (Colbert,
1994) found that fear of diagnosis or of treatment, as well as the adoption of a “wait
and see” approach, brought longer delay. Shorter delay was also associated with being
married or living with a partner as opposed to being single or widowed. This is a poor
study methodologically since not all women had self-discovered symptoms and true
delay could not be ascertained, so conclusions from this paper are weak.
In summary, when considering the implications for the, as yet, largely
uncharted territory of testicular cancer, some of the particularities of testicular
changes and their attribution as well as more broadly applicable psychosocial factors
should be included. These require sensitive measurement that should probably go
beyond standardized psychometrics.
OTHER QUANTITATIVE STUDIES
Considering studies of other individual cancer types, the particular medical features
as well as different methods and measures make comparisons difficult and some factors are specific to the cancer involved. A study of brain tumour patients (Salander et
al., 1999) illustrates this with results from 28 patients and their spouses. Three patient
factors made individuals less inclined to identify themselves as being sick and in
need of help. These included two factors that other studies have commented on: attribution of symptoms to nonserious causes or “less alien symptoms” (sic) and avoidance. However, the third is rather specific to brain tumour presentation and includes
personality changes such as lethargy and the inability to initiate action or accurately
judge the situation. Dent et al. (1990) explored delay in presentation following rectal
bleeding and psychological factors, beliefs, and behaviour associated with this. Delay
was found to be unrelated to age, sex, social status, availability of social support, and
the belief that symptoms may indicate cancer. No relationship was found between
any of the measured psychological traits (anxiety, depression, hypochondriasis, and
emotional control) and delay. Once again the failure of general measures and the relevance of symptom interpretation and denial/avoidance are highlighted.
The sole study to use postal questionnaires, Mansson et al. (1993) investigated
presentation history in bladder cancer. Age and gender were not related to delay: the
only clinical variable significantly associated with promptness in seeking help was
haematuria (i.e., the appearance of blood in the urine). No significant relationships
were found between delay and whether initial symptoms were considered serious,
whether individuals had previous protracted illnesses, or educational level. The
rather remote data collection may have been less sensitive than interviewing, and
significant drop-out biased the sample toward younger people and those with lower
stages of disease, suggesting this may not be a valuable data collection technique
where sensitivity is a key, as is clearly the case in testicular cancer.
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Few studies have investigated younger patients, though one recent study
(Llewellyn, Johnson, & Warnakulasuriya, 2004) investigated under-45-year olds
with oral squamous cell carcinoma (i.e., the second most common skin cancer after
basal cell carcinoma)—itself also a relatively rare disorder increasing in prevalence.
Delay was longest for those who lacked further education, who perceived themselves as under stress prior to diagnosis, and, intriguingly, those who smoked less
tobacco. It is possible that the degree of attention to health may be greater in those
with further education and, paradoxically, for those engaging in potentially risky
behaviors.
Several studies have contained a mixture of different cancer patients, including
some that allow for their comparison. Mor et al. (1990) studied more than six hundred individuals with newly diagnosed lung, breast, and colorectal cancer. Results
showed that colorectal cancer patients with more advanced disease at diagnosis or
with another chronic illness were significantly less likely to have delayed. Breast
cancer patients who also had another chronic illness were less likely to delay, but no
relationships of this kind were observed for lung cancer patients. Taken together
these results suggest that many psychosocial effects may be illness-specific. Chakravorty et al. (1993) used a standardised measure of psychiatric morbidity in a large
mixed sample. Unlike the previous study, no attempt was made to differentiate
between cancers, and they do not list those included. Unsurprisingly, those who had
delayed had significantly higher psychological distress scores. The main reasons
given for delay were that the cancer was not diagnosed by the primary caregiver, the
patient was ignorant of the disease or did not realise he/she needed early treatment,
relatives/friends had died of cancer, and fear or avoidance of cancer. The methodology is poorly documented, it appeared to confound referrer delay with that of the
patient, and, as with other papers, the language implied blame of patients. The merging of patient and system delay could explain the unusually high number of patients
(62%) whom they considered to have delayed a considerable amount of time.
Although a study comparing testicular with other cancers is overdue, these many pitfalls require attention if valid results are to be obtained.
QUALITATIVE APPROACHES TO TESTICULAR CANCER
More recently there has been an interest in applying qualitative approaches to helpseeking behaviour. Least usefully perhaps, as they combined cancers of many types,
de Nooijer, Lechner, and de Vries (2002) interviewed 23 men and women about the
process. Unsurprisingly, many attributed symptoms to common ailments at first,
although embarrassment and shame were contributors to delay. In addition to the
study reported earlier, three qualitative studies have investigated testicular cancer
(Chapple et al., 2004; Gascoigne et al., 1999; Sanden & Eriksson, 2000). Gascoigne
et al. (1999) interviewed six participants using a semi-structured interview format to
elicit information with regard to the history of the symptoms, thoughts and feelings,
interpretations of symptoms, knowledge, and past behaviour in seeking help. They
highlighted three important areas: “symptom appraisal,” “care seeking,” and “living
up to images of masculinity.” They note that typically men attributed their symptoms to external causes, although one attributed it to cancer (with a delay of six
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months). Men often shared their symptoms with others, usually partners or relatives,
and this often resulted in encouragement to seek help. Half of the men involved
were described as having been encouraged by their wives, while embarrassment and
fear of diagnosis were barriers to seeking help. Although not a specific line of initial
enquiry within this study, the third category of living up to images of masculinity
emerged spontaneously from the data. This included issues of not feeling whole and
of feeling judged by other men and the observation that women are more able than
men to talk about personal issues. The 21 males in Sanden and Eriksson’s study
(2000) also described the process of help-seeking. Commonly, men adopted a “wait
and see” approach but also sought to define the reasons for their testicular changes.
In common with the previous study, the authors related the “wait and see” approach
to attributions to external causes, embarrassment about talking about testicular
symptoms, avoidance of a cancer diagnosis, and confusion with fluctuating symptoms. Nine men chose not to talk to others, and six men did not talk to anyone prior
to seeking help. Lastly, Chapple et al. (2004) found that those who sought help relatively quickly had heard about testicular cancer in the media, had seen leaflets in
GPs’ surgeries, or knew others with this disease. Men who delayed feared appearing
weak or being thought of as a hypochondriac or lacking in masculinity, recalled past
illness or painful examinations, or were embarrassed.
These papers raised issues once again related to attributions about symptoms.
As with other studies, Salander et al. (1999) and Henrikkus (1991) found that the
attributions people made with regard to symptoms were important to future helpseeking behaviour. However, Mansson et al. (1993) and Dent et al. (1990) found
attributions had no relationship to delay. Overall these studies demonstrate the difficulty in establishing any definitive influences on cancer and delay, although various
factors have emerged that deserve further attention: namely, attributions, symptoms,
the role of partners, the role of anxiety, and embarrassment for males.
CONCLUSIONS
Several likely factors emerge from this selective review that might prove relevant to
testicular cancer. Given its prominence in other forms of cancer, the issue of symptomatology and its relationship to delay is a highly pertinent one (Nosarti et al.,
2000). In the public mind, cancer is commonly associated with lumps and pain, and
these types of symptom have been commonly found to decrease delay. Caplan
(1995), for example, found that nondelayers (less than two months) often had symptoms that increased as opposed to fluctuated, decreased, or remained static. Women
with these symptoms may have interpreted their symptoms as more serious and, as
we have seen, attributions concerning severity are influential. Crucially, testicular
changes rarely involve pain—a fact unknown to most men. In several studies, poor
health awareness was also associated with increased delay, and this is very likely to
be the case with testicular cancer. Health education aimed at raising awareness of its
symptoms and how to perform TSE (i.e., Testicular Self-Exam) is sorely needed, as
is research into its effectiveness.
An earlier review restricted to breast cancer (Ramirez et al., 1999) came to the
conclusion that “overall, the evidence is currently insufficient to inform the develop122
STUDYING HELP-SEEKING
ment of specific strategies to shorten delay by patients” (p. 1130). Little has happened to advance this state of affairs, and it certainly applies in the case of testicular
cancer. They suggest that one useful way forward may be to take previous research
findings and refine these with the use of qualitative research. Such research could
also move away from the concept of separating individuals into “delayers” and
“non-delayers” per se and seek to understand further the process of help-seeking
across a wide range of delay times. One model of patient delay has delineated several stages, though it is uncertain whether this a useful way of understanding the
process: several qualitative studies including our own (this issue) have highlighted
the nonlinear nature of the process, with a uncertainty about symptoms and severity
at several time-points.
Overall, there is a great deal of variability of findings that is unsurprising given
the varied nature of sampling, methodology, and measurement employed in studying
patient delay in cancer. Nevertheless, some consistent results appear to implicate
patients’ habits, norms, and expectations regarding both their health in general and
specific symptoms of potential disease in particular. It is not the presence or absence
of a symptom per se but how one perceives its cause, severity, controllability, or
treatability that, in part, determines behaviour. The role of emotional processes
remains less certain, though they are undoubtedly an important part of delay. Distress is another variable to emerge of substantive influence, at least for some in some
contexts. A simple relationship is unlikely to be the case in testicular cancer since
processes of defence and denial often operate to reduce apparent distress while
increasing delay yet further. In this context, avoidance has been highlighted by several qualitative studies as a key contributor to delay.
Key methodological suggestions highlighted by the review included the utility
of comparing different samples rather than combining several cancer groups without
discrimination. A clear need is seen for measures that are specific and sensitive to
the issues in testicular cancer. While these may well include questionnaires, they
probably need to be administered in the context of sensitive interviewing since even
the determination of the length and nature of delay has pitfalls for the overly simplistic measure. The early stages of just how a symptom has been detected and the
process by which this is acted upon are still largely unknown, and these issues
exemplify the need for nonblaming and in-depth research. We would recommend
adoption of the less pejorative phrase “lag-time,” noting that this is multi-determined
and implies no criticism of the patient. Given the fear and embarrassment that surrounds open discussion of cancer, something particularly highlighted by several
qualitative studies of testicular cancer, good relationships with physicians who
model a comfortable handling of sensitive issues is paramount.
At the beginning of the review, the disparity in men’s and women’s health
behaviour was noted, with consequences for mortality rates. At least part of this difference may result from a disparity in health awareness and knowledge, and research
highlighting testicular cancer seems a case in point with low awareness and poor
knowledge of its symptoms. While most testicular cancer was self-detected (or
detected by a partner), this was a case of passively noticing change rather than a
result of testicular self-examination (to our knowledge something not mentioned by
a single respondent in qualitative studies including our own). Health education may
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help lead to much greater use of TSE in the future, and it will be interesting to see
whether this is indeed the case and whether it has an impact on delay. Given the relatively young age of many patients, it may be that the diversity of emerging male
gender roles and less “traditional reluctance” in care seeking will lead to changes to
patterns of healthcare utilisation in younger men.
Much empirical research suffers from the absence of social and economic influences, and these too have been shown to be critical in other cancers. While these
may operate via intrapsychic processes, they also undoubtedly have a direct effect
on delay—via availability of care, for example. Not only should quantitative studies
continue to elaborate on the findings of this corpus of evidence, extending it to other
cancers, but qualitative approaches may help to elucidate why these factors have
their effects. Together these approaches may help improve the prospects of reducing
delay by informing effective education and intervention.
NOTE
1. Staging is a system by which malignant tumours are classified. This is done
using information about primary tumours, regional lymph node status, and the
absence or presence of distant metastases. An overall clinical stage is then allocated
(I to IV). The use of the staging system enables the evaluation of treatment and may
help clinicians in deciding about prognoses and appropriate management (Rees et
al., 1993).
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