Patient delay in women presenting with advanced breast cancer: an Iranian study

Patient delay in women presenting with advanced breast cancer: an Iranian study

Public Health (2005) 119, 885–891 Patient delay in women presenting with advanced breast cancer: an Iranian study I. Harirchia,b,*, F. Ghaemmaghamic,...

110KB Sizes 0 Downloads 21 Views

Public Health (2005) 119, 885–891

Patient delay in women presenting with advanced breast cancer: an Iranian study I. Harirchia,b,*, F. Ghaemmaghamic, M. Karbakhshd, R. Moghimic, H. Mazaheriec a

Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran Iranian Centre for Breast Cancer, Tehran, Iran c Tehran University of Medical Sciences, Tehran, Iran d Sina Trauma and Surgery Research Centre, Tehran University of Medical Sciences, Tehran, Iran b

Received 10 March 2004; received in revised form 2 September 2004; accepted 13 November 2004 Available online 23 May 2005

KEYWORDS Advanced breast cancer; Patient delay; Iran

Summary Introduction: Due to the lack of systematic screening programmes for early detection of breast cancer in Iran and the predominance of advanced cases, we aimed to study the extent and determinants of patient delay in women with advanced breast cancer. Materials and methods: In this 1-year cross-sectional study, all consecutive women with advanced breast cancer (stages IIb, III or IV) who initially presented to a university hospital were studied. Results: Sixty-eight percent (136/200) of cases had delayed their first visit by O1 month and 42.5% by O3 months. The median patient delay was 12 weeks. Delay was associated with: older age, being married, lower income, less education, place of residence (small cities), negative family history of breast cancer, belief in the fatality of breast cancer, lack of access to healthcare services, lack of knowledge of breast cancer symptoms, and denying the importance of breast self-examination. The main reasons given for the delay were: lack of knowledge regarding the necessity of such a visit, fear, negligence, lack of access to physicians, and poverty. Discussion: In contrast to some other studies, this study found that married women and those with a negative family history of breast cancer waited longer than others before seeking care. Public education initiatives focused on encouraging women (especially high-risk groups such as older women, married women, and those living in small cities or villages) to see a doctor promptly for evaluation of breast symptoms can decrease delay and improve patient outcome. Q 2005 The Royal Institute of Public Health. Published by Elsevier Ltd. All rights reserved.

* Corresponding author. Address: Central Building of Tehran, University of Medical Sciences, Taleghani St, Qods St, Enqelab St., P.O. Box 14155/6559, 14178 Tehran, Iran. E-mail address: [email protected] (I. Harirchi).

Introduction In the Middle East, including Iran, breast cancer is the most common malignancy among women.1

0033-3506/$ - see front matter Q 2005 The Royal Institute of Public Health. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.puhe.2004.11.005

886 It accounts for 21.4% of all female malignancies in Iran.2 A study in Tehran, the capital city of Iran, found that breast cancer accounted for 25.5% of all female cancers with a crude incidence rate of 22.4 in 100,000 women in 1998.3 Due to the lack of a systematic screening or education programme for early detection of breast cancer in Iran, about 70% of Iranian women newly diagnosed with this malignancy have regional or distant disease at the time of diagnosis.4 In fact, patient delay in seeking medical attention might be a contributing cause in a considerable number of breast cancer deaths.5 The association between patient delay and sociodemographic factors, cancer knowledge, family history of breast cancer and other factors has been widely studied.6 However, most of these studies are from developed countries. As Thongsuksai et al. from Thailand stated, ‘socio-cultural aspects of care or help-seeking behaviour may be different in less developed countries and cancer education programmes are not well developed in these communities’.7 To date, only one report from Iran has studied patient delays and the contributing factors. However, in that paper, patients with different stages of breast cancer were reviewed, and the knowledge and attitudes of women who delayed seeking help were not compared with those of women who did not delay.8 Due to the predominance of advanced cases among our breast cancer patients and the importance of our knowledge regarding the factors contributing to late presentation, the aim of this research was to study the extent and determinants of patient delay in women with advanced breast cancer in Iran.

I. Harirchi et al. questionnaire. The independent variables included: age; marital status; place of residence; body mass index; family history of breast cancer; age at menarche, first pregnancy and menopause (for postmenopausal women); presenting symptom(s); knowledge of risk factors, symptoms of breast cancer, diagnostic modalities applied; attitude towards the preventability of breast cancer; access to physicians at the place of residence; and history of any chronic diseases. The main outcome variable was patient delay. In general, the delay in diagnosis and treatment of cancer is divided into patient and provider (or system) delay. Patient delay is defined as the period from recognition of the first symptom by the patient to initial medical consultation. Provider delay covers the period from first consultation to definite diagnosis and treatment.9 Some authors have taken 1 month or 3 months as the criterion for patient delay, and the factors related to a delay of 1 month or longer have also been related to a 3-month delay.10 Due to the advanced stage of breast cancer at initial diagnosis in our patients, we decided to consider a lapse of more than 1 month (instead of 3 months) as patient delay. In other words, when a breast mass in an advanced stage is detected by a woman, it is already large enough to attract her immediate attention and precipitate a physician’s visit. Thus, in such a case, even a 1-month delay is a long delay compared with a woman who encounters a small mass in her breast and ignores it or waits to see whether it disappears spontaneously. Chi-squared test and t-test were used for statistical analysis. An a value of 0.05 was considered to be significant.

Materials and methods Results In this cross-sectional study, all consecutive women from all age groups with a histologically proven diagnosis of advanced breast cancer (stages IIb, III or IV) who presented to a university hospital for initial consultation from April 2000 to April 2001 and who signed the informed consent were included in this study. Unfortunately, a firm and defined referral system does not exist in Iran. As such, it is difficult to define a catchment area with clear-cut limits for health centres. However, the university hospital is a tertiary centre that accepts referrals from all over the metropolitan area of Tehran (population of approximately 8 million). Data were obtained through interview by a single trained general practitioner using a structured

Two hundred women were eligible for the study.

Age distribution The mean age of patients was 46.8 years, and the median was 46 years (0.95 CIZ45.12–48.48, age range 20–79 years). One hundred and five patients (52.5%) were postmenopausal with a mean age and standard deviation of 46.8 and 4.3 years at menopause, respectively. Mean ageGSD of patients at menarche, marriage and first pregnancy were 13.4G1.4, 18.1G3.1 and 20.2G3.7 years, respectively.

Patient delay in advanced breast cancer in Iran

Other demographic characteristics Other patient characteristics are shown in Table 1.

887 Table 1 Characteristics of patients with advanced breast cancer. Number

Patient delay The patients initially visited a physician between !1 and 36 months after the onset of symptom(s) (mean 5.8 months, median 3 months). In fact, in 17.5% of cases, the consultation was immediately after the onset of symptoms (nZ35), and in 14.5% of cases, the consultation was made within 1 month (nZ29). The remaining 68% of patients (nZ132) delayed consultation by O1 month. The frequency distribution of patients according to the time between symptom onset and initial medical consultation is shown in Table 2.

Demographic variables and patient delay

Age group (years) 20–34 35–49 50–64 65–79 Marital status Married Never married (single) Widowed Divorced Education levels Illiterate High school and less High school certificate Higher (university) education

Characteristics of patients (except knowledge and attitude towards breast cancer) who delayed consultation and those who did not are shown in Table 3.

Economic status Poor Moderate Good Very good

Knowledge and attitudes towards breast cancer and patient delay

Place of residence Urban (large city) Urban (small city) Rural (village)

Table 4 compares the knowledge and attitudes towards breast cancer between these two groups.

Reasons for patient delay The reasons given for delaying medical consultation (nZ136) are summarized in Fig. 1. In Fig. 1, ‘others’ refers to those in whom several factors were implicated.

Discussion High prevalence of patient delay Although different classifications and definitions of patient delay in different publications limits the possibility of making direct comparisons, the high proportion of cases who delayed consultation when seeking initial care for breast cancer in our study was remarkably high. In fact, 68% of patients delayed consultation for O1 month and 42.5% for O3 months before their first visit for breast symptoms. In a large study from the UK, Richards et al. reported a prevalence of patient delay (O12 weeks) of 55.5% in women with locally advanced breast cancer. This percentage rose to 67.3% in

%

34 81 65 20

17 40.5 32.5 10

162 10 25 3

81 5 12.5 1.5

91 59 39 11

45.5 29.5 19.5 5.5

35 94 59 12

17.5 47 29.5 6

83 100 17

41.5 50 8.5

Access to physician in the place of residence Yes 153 76.5 No 47 23.5 Body mass index !20 20–25 O25 History of chronic disease Yes No

12 97 91 136 64

Family history of breast cancer Yes 67 No 133 Presenting symptom Breast lump only Breast lump and pain Breast lump and bloody discharge of nipples Breast lump and ulcer Breast lump and change in skin Axillary mass Breast pain Bloody discharge of nipples Change in breast skin Breast ulcer

106 30 22

6 48.5 45.5 68 32 33.5 66.5 53 15 11

10 13

5 6.5

8 5 2 2 2

4 2.5 1 1 1

888

I. Harirchi et al.

Table 2 Frequency distribution of patients presenting with advanced breast cancer according to duration of patient delay. Duration of patient delay (months)

Number

%

0–1 2–3 4–5 6–12 13–24 25–36 Total

64 51 19 39 25 2 200

32 25.5 9.5 19.5 12.5 1 100

Long median patient delay

metastatic cases.11 Similarly, 45–60% of low-income Black women have been reported to delay consultation by O6 months.12 Thus, although no recent reports have focused mainly on patient delay in advanced-stage breast cancer, studies from Iran8 and other countries9 that have reviewed all stages have noted a significant association between delayed presentation and late-stage disease. In fact, the factors leading to advanced disease at presentation may also contribute to delayed Table 3

presentation, although this needs further clarification. These percentages are also higher than those reported in studies covering all stages of breast cancer in Iran (25% with 3-month patient delay)8 and other countries (14–26.6% with 3-month patient delay).7,9,10,13

The median patient delay in our setting was also rather high (3 months). Thongsuksai et al. from Thailand reported a median delay of 8 weeks in patients with stage III disease (interquartile rangeZ2–27) and 28 weeks in patients with stage IV disease (interquartile rangeZ3.5–67.5).7

Older, married women are more likely to delay consultation In agreement with some large studies,9,11,14,15 we found that patient delay was associated with older age; however, other studies have reported the reverse16,17 or no relationship.13 In a systematic review, Ramirez et al. reported that there is strong

Comparison of characteristics of studied subjects with and without patient delay.

Patient delay Variable Marital status Married No single Level of education Illiterate High school High school certificate University education Economic status Poor Moderate Good Very good Place of residence Large city Small city Village Access to physician in the place of residence Yes No History of a chronic disease Yes No Family history of breast cancer Yes No NS, not significant.

No [n (%)] (NZ64)

Yes [n (%)] (nZ136)

P value

56 (87.5) 8 (12.5)

134 (98.5) 2 (1.5)

0.002

20 23 13 3

(31.3) (35.9) (20.3) (2.2)

71 (52.2) 36 (26.5) 26 (19.1) 8 (12.5)

5 30 19 10

(7.8) (46.9) (29.7) (15.6)

30 (22) 64 (47.1) 40 (29.4) 2 (1.5)

36 (56.3) 23 (35.9) 5 (7.8)

47 (34.6) 77 (56.6) 12 (8.8)

57 (89.1) 7 (10.9)

96 (70.6) 40 (29.4)

46 (71.9) 18 (28.1)

90 (66.2) 46 (33.8)

34 (53.1) 30 (46.9)

33 (24.3) 103 (75.7)

0.04

0.01

0.01

0.004 NS

0.001

Patient delay in advanced breast cancer in Iran Table 4

889

Comparison of knowledge and attitudes toward breast cancer in patients with and without patient delay.

Patient delay Variable

No [n (%)] (nZ64)

Knowledge about symptoms Breast or axillary mass 17 (26.6) Mass and other symptoms 46 (71.9) Declares ignorance (‘I do not know’) 1 (1.5) Knowledge about prevalence BC is the most common female 36 (56.5) cancer Another cancer (except BC) is the 10 (15.5) most common Declares ignorance 18 (28) Knowledge about the main way for diagnosis Monthly self-examination 26 (40.6) Physician’s examination 18 (28.1) Mammography 12 (18.7) Blood exam (misconception) 4 (6.3) Declares ignorance 4 (6.3) Attitudes about prevention and treatment BC is preventable and curable 45 (70.3) BC is incurable and fatal 3 (4.7) BC is in one’s fate 6 (9.4) No ideas 10 (12.6) Attitudes toward breast self-examination Declares importance 54 (84.4) Denies importance 10 (15.6) Familiarity with breast self-examination Yes 21 (32.8) No 43 (67.2)

Yes [n (%)] (nZ136) 35 (25.7) 79 (58.1) 22 (16.2)

P value

0.01

55 (40.5) 22 (16)

NS (PZ0.08)

59 (43.5) 52 36 13 8 27

(38.2) (26.5) (9.6) (5.9) (19.8)

81 22 20 13

(59.6) (16.2) (14.7) (9.5)

85 (62.5) 51 (37.5) 32 (23.5) 104 (76.5)

NS (PZ0.08)

NS (PZ0.09)

PZ0.002

NS (PZ0.16)

BC, breast cancer; NS, not significant.

evidence of an association between older age and patient delay, and strong evidence that marital status is unrelated to patient delay.6 Nevertheless, the latter relationship was significant in our research; single women were less likely to delay seeking medical care. This could be due to the central role of married women as both ‘housewives’ and ‘mothers’ in Iranian families. In their traditional roles, married women do not usually have much time for themselves as they have to deal with household chores, children’s needs and outdoor activities such as shopping.

Our finding might also be due to the fact that these women had observed a full range of treatment modalities offered to their relative, which probably saved her from an otherwise fatal disease.

Lower income and education: possible barriers for a timely visit Similar to our finding, lower income9,12 and less education8,9,12,15 have been reported to be the major demographic risk factors for patient delay.

Positive family history precipitates a visit

Lack of knowledge and access to health care: other significant determinants

In our study, women with a family history of breast cancer were less likely to delay in seeking medical care. This sounds reasonable as the perceived risk might have led to more immediate actions upon discovery of a mass. However, some authors did not find any significant associations in this regard,9,10 while others have detected a trend for the reverse.13

In addition, lack of access to healthcare services and lack of knowledge of breast cancer symptoms, which proved significant in our study, have been reported to influence women’s judgement regarding whether to delay an evaluation for a selfdiscovered breast cancer symptom.12 In fact, 16.2% of those who delayed consultation compared with

890

I. Harirchi et al. terms of distribution of healthcare facilities and resources.

40 35 30

Important non-significant differences

25 25 20

16

15 10

8

poverty

11 9

lack of access to a physician

number of patients

30

5

others

negligence

fear

lack of knowledge on necessity of physician's visit

0

Negative perceptions about breast cancer treatment have been proposed as a risk factor that may play a role in patient delay,12 although the results have been inconsistent.13,20 In our study, those who delayed consultation were more likely to report a belief in fate and also the fatality of breast cancer, but the difference was not statistically significant (PZ0.09). Similar to Arndt et al.’s experience, no significant relationship was observed between patient delay and presence of any co-morbidity.9

Reasons for patient delay

only 1.5% of those who did not delay did not know any of the symptoms of breast cancer.

In another paper, women with breast symptoms delayed consultation because they had thought that the symptom(s) were not serious (lack of knowledge about the symptoms of breast cancer), they would go away, fear, or lack of time to seek care.10 In another report, considering symptoms to be harmless was the most important reason for delaying consultation for more than half of the patients. Other reasons were time constraints, fear of diagnosis and surgery, and having to wait for an appointment.9

Breast self-examination

Limitations and preventive implications

The relationship between patient delay and practice of breast self-examination (BSE) has been evaluated in other studies and has not proved to be significant.13,18,19 As practice of BSE is still scarce or inconsistent among Iranian women, we did not assess this among our cases. However, women who delayed consultation were less likely to declare the importance of BSE, but the rate of familiarity with this technique was not significantly different between the two groups.

Before any generalizations can be made, a number of limitations should be kept in mind when considering the findings of this study. The possibility of recall bias is an issue as some women may have wrongly estimated breast symptom duration before they saw a doctor. This study only included women who finally saw a physician for their breast symptoms. Additionally, this research was conducted at a university (teaching) hospital, so the results might not be generalizable to all Iranian women. This research recognizes the high-risk group for patient delay as older, married women of lower socio-economic class who live in suburban areas. These women do not know the symptoms of breast cancer and are ignorant towards the importance of BSE. Thus, even if a thorough and inclusive breast cancer screening and education programme is not affordable for our healthcare system, it would prove more cost-effective to start with this subgroup of women. In fact, they seem to be an appropriate population in which to commence serious preventive and educational measures.

reasons

Figure 1

Reasons given for delaying treatment.

Women from suburban areas are more likely to delay consultation Place of residence was also found to have a relationship with patient delay in our study. However, this has only been evaluated in one other paper and it was not found to be significantly related.15 The observed difference in our study might be attributed to the rapidly increasing process of urbanization, which has led to a large gap between urban and suburban or rural areas in

Patient delay in advanced breast cancer in Iran As Meechan et al.13 and Richards et al. 11 reported, patient delay in seeking evaluation of a breast symptom should be minimized not only because of the importance of early diagnosis and treatment in good survival, but also because the shorter the patient delay, the less time a woman has to worry unnecessarily. Thus, public education initiatives focused on encouraging women to see a doctor promptly for evaluation of breast symptoms can decrease patient delay and thus improve patient outcome.

References 1. Kahan E, Ibrahim AS, El Najjar K, Ron E, Al-Agha H, Pollicak A, El Bolkainy MN. Cancer patterns in the Middle East—a special report from the Middle East Cancer Society. Acta Oncol 1997;36:631–6. 2. Summary of Report on Cancer Incidence in Iran. Cancer and Genetics Administration, Non-communicable Disease Sector of Iranian Center for Prevention and Control of Diseases. Deputy of Health, Ministry of Health, Treatment and Education. Islamic Republic of Iran: Tehran, 2000. 3. Shamsa AZ, Mohagheghi MH. National Project for cancer registry. Proposing a Model by the National Center for Cancer Registry. Final Report of the Project. Sponsored by Cancer Institute of Tehran University of Medical sciences & Deputy of Research, Ministry of Health, Treatment and Education. Islamic Republic of Iran: Tehran, 2002. 4. Harirchi I, Ebrahimi M, Zamani N, Jarvandi S, Montazeri A. Breast cancer in Iran: a review of 903 case records. Public Health 2000;14:143–5. 5. Richards MA, Westcombe AM, Love SB, Lihlejohns P, Ramirez AJ. Influence of delay on survival in patients with breast cancer: a systematic review. Lancet 1999;353: 1119–26. 6. Ramirez AJ, Westcombe AM, Burgess CC, Sutton S, Littlejohns P, Richards MA. Factors predicting delayed presentation of symptomatic breast cancer: a systematic review. Lancet 1999;353:1127–31. 7. Thongsuksai P, Chongsuvivatwong V, Sriplung H. Delay in breast cancer care: a study in Thai women. Med Care 2000; 38:108–14.

891 8. Montazeri A, Ebrahimi M, Mehrdad N, Ansari M, Sajadian A. Delayed presentation in breast cancer: a study in Iranian women. BMC Women’s Health 2003;3:4. 9. Arndt V, Sturmer T, Stegmaier C, Ziegler H, Dhom G, Brenner H. Patient delay and stage of diagnosis among breast cancer patients in Germany—a population based study. Br J Cancer 2002;86:1034–40. 10. Nosarti C, Crayford T, Roberts JV, Elias E, Mckenzie K, Davis AS. Delay in presentation of symptomatic referrals to a breast clinic: patient and system factors. Br J Cancer 2000; 82:742–8. 11. Richards MS, Smith P, Ramirez AJ, Fentiman IS, Rubens RD. The influence on survival of delay in the presentation and treatment of symptomatic breast cancer. Br J Cancer 1999; 79:858–64. 12. Facione NC, Miaskowski C, Dodd MJ, Paul SM. The selfreported likehood of patient delay in breast cancer: new thoughts for early detection. Prev Med 2002;34: 397–407. 13. Meechan G, Collins J, Petrie K. Delay in seeking medical care for self-detected breast symptoms in New Zealand women. New Zeal Med J 2002;115:U257. 14. Afzelius P, Zedeler K, Sommer H, Mouridsen HT, BlichertToft M. Patient’s and doctor’s delay in primary breast cancer. Prognostic implication. Acta Oncol 1994;33: 345–51. 15. Montella M, Crispo A, D’Aiuto G, De Marco M, de Bellis G, Fabbrocini G, Pizzorusso M, Tamburini M, Silvestra P. Determinant factors for diagnostic delay in operable breast cancer patients. Eur J Cancer Prev 2001;10:53–9. 16. Machiavelli M, Leone B, Romero A, Perez J, Vallejo C, Bianco A, Rodriguez R, Estevez R, Chacon R, Dansky C. Relation between delay and survival in 596 patients with breast cancer. Oncology 1989;46:78–82. 17. Richardson JL, Langholz F, Bernstein L, Burciaga C, Danley K, Ross RK. Stage and delay in breast cancer diagnosis by race, socioeconomic status, age and year. Br J Cancer 1992;65: 922–6. 18. Caplan LS. Patient delay in seeking help for potential breast cancer. Public Health Rev 1995;23:263–74. 19. Burgess CC, Ramirez AJ, Richards MA, Love S. Who and what influences delayed presentation in breast cancer? Br J Cancer 1998;1343–8. 20. Ajekigbe A. Fear of mastectomy: the most common factor responsible for late presentation of carcinoma of the breast in Nigeria. Clin Oncol 1991;3:78–80.