COMMUNITY HEALTH STUDIES VOLUME X N , NUMBER 2.1990 REMINDER LETTERS FOR WOMEN WHEN REPEAT PAP SMEARS ARE DUE Heather Mitchell
Victorian Cytology (Gynaecological) Service, PO Box 2S3B. Melbourne. 3001. Abstract Regular participation in a high-quality screening program by all 'at risk' women is necessary if Australia is to be maximally successful in preventing cervical cancer. This paper discusses the use of reminder letters as one method of facilitating participation. Options for the source of the letters are discussed. I t is concluded that basing the recall letters on a register of previously screened women is the only feasibls approach within the Australian health care system. The impact of reminder letters on achieving regular participation by Australian women remains to be tested. Introduction A critical factor in the potential success of cervical cancer screening is the proportion of 'at risk' women who participate regularly in the screening program throughout adult life. Australia, like many Western countries, has not established a formal screening program, but has been content to rely for the last quarter century on an oppormnistic or passive approach to screening. In recent years, the limitations of such policy decisions have been a topic of increasing concern to women and health professionals, both in Australia and internationally. Reliance on opportunistic screening tends to result in younger women (who are more likely to be having vaginal examinations than older women) being preferentially screened. Fifty-three per cent of the claims for Papanicolaou (Pap) smears to the Health Insurance Commission for the period January-June 1988 were from women aged less than 4 0 years. The risk of cervical cancer in women over 40 years of age has been estimated to be at least 20 times higher than the risk in women aged less than 30 years.' Furthermore, the evidence is that only a low level of protection lasts for more than 5 years after a negative smear and by 10 years the risk of cancer is no different from an unscreened population.' Claims that surgical management of young women with cervical intraepithelial neoplasia (CIN) will be followed by a reduction in the incidence of invasive cancer in later years are
MITCHELL
based on unproven assumptions.' Therefore, intensive screening of young women may not necessarily translate into better health outcomes at older ages. This paper explores one possibility for facilitating regular participation by women personal letters to women for rescreening when their next test is due or slightly overdue (recall letters). Personal letters of invitation have been identified by the World Health Organisation and the Intemational Agency for Research on Cancer as one element of an effective organised screening program.' Computerised call and recall programs are currently being introduced throughout England and Wales.' The first recommendation of the Australian Health Ministers' Advisory Council (AHMAC) working party on cervical cancer screening (November 1987) was "that a calvrecall mechanism is an essential part of a national cervical cancer screening strategy".
Current Screening Frequency in Australia The best current evidence on the frequency with which Australian women are screened comes from claims to the Health Insurance Commission for Pap smears. Of the women aged less than 70 years who made a claim for a Papanicolaou smear during the month of April 1985. 18 per cent made one or more further claims for smears during the next 12 months, 54 per cent during the next 24 months, and 80 per cent during the next 36 months. These encouraging retum rates have been achieved in a climate of unprecedented publicity about cervical cancer screening. Nevertheless, it is worrying that by 3 years, two out of 10 screened women had not been rescreened. In view of a less than 2 per cent cumulative lifetime risk of cervical cancer.' it is also disturbing that almost one in 5 of the screened women were rescreened again within 12 months. Such intensive rescreening is costly, providing little benefit to the community. We have wanted to believe that an opportunistic approach whereby a doctor takes a smear when a woman consults h i m h e r for a health problem would be a satisfactory approach to a public health issue. It is not. An appropriately
126
COMMUNITY HEALTH STUDIES
TABLE 1 VCGS screening history of women who were diagnosed with cervical cancer In 19ss by age group
A*
No. d
(Yd
women
20-29 30-39
40-49 50-59 60-69 > 69 Total
23 61 41 47 54
44
270
Screening history
Negative/benign CYtOloeY
Abnormal cytology
CYtOlosY
3wo 48% 34% 32% 19% 9%
4% 16% 24% 13% 17% 0%
57% 36% 42% 55% 65% 91%
81 (304b)
36 (13%)
153 (57%)
(the majority of which are diagnostic smears taken in the context of symptoms), 30 per cent (81/270) of the women had one or more negative/benign smears with the Victorian Cytology Gynaecological Service (VCGS) prior to the diagnosis of cancer, 13 per cent (36/270) of the women had abnormal cytology at some preceding time, and 57 per cent (153/270) had no previous cytology with the VCGS. Table 1 shows the screening histories by age-group for these women. For the 81 women who had negativelbenign cytology reports preceding their diagnosis of malignancy, an analysis was undertaken of the adequacy of their screening history. An adequate screening history was defmed as one where the woman had three or more negative/benign smear reports issued during the preceding 10 years. and where an interval of at least 2 years separated each of three smears. During this time period the VCGS reported most Victorian Pap smears; the lack of MYcentralised record system in Australia prior to the introduction of Medicare in 1984 precludes a precise numeric estimate. By this definition, 11 of the 81 women had an adequate screming history. The distribution of malignancy type in these 11 women was as follows: 4 microinvasive CMCC~S. 4 invasive squamous cell carcinomas (2 Stage 1B. 1 Stage 2, 1 unknown stage). 1 adenosquamous cell carcinoma, and 2 adCnOCarCinOmrS. Thus a minimum of 4 per cent ( l l n 7 0 ) of the women with cervical cancer appeared to have developed malignancy despite an adequate screening history. The proportion is a minimum estimate. as some of the 270 women will have been screened in other Victorian laboratories. By
regular screening pattern (that is. one which is neither too frequent nor too infrequent) cannot be maintained throughout adult life by utilizing consultations for random episodes of sickness. Although more than 80 per cent of women consult a doctor at least once during a 12 month period. they do so primarily because they are 'ill'. One must question whether episodes of 'illness' are an appropriate time for the collection of Pap smears. In very recent times with increasing concern over false-negative reports and rapid onset cancer, there has been much support for the idea that annual Pap smear screening is necessary. Policies such as this are difficult to justify on the basis of cost - both financial and emotional. Annual Pap smear screening would involve approximately 50 tests for each woman during her adult life. We have no evidence that the majority (or even a minority) of Australian women have the necessary stamina to undergo 50 tests. It is likely that many would tire and no longer continue with screening -often at a time in their lives when their risk of cervical cancer is beginning to become substantial.
Screening Frequency of Women wlth Cervical Cancer Some indication as to what a reminder system might achieve can be gained from a review of the screening history of women who were recently diagnosed with cervical cancer. Two hundred and seventy one women were registered with the Victorian Cancer Registry for 1985, the last year for which registrations are complete. One woman has subsequently had an incorrect registration deleted. Excluding smears taken within 12 months of the diagnosis of cancer
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contrast, 26 per cent (70/270) of the women had some contact with the VCGS in a screening capacity, but not with sufficient regularity. Overwhelmingly the evidence is that most women who are diagnosed with cervical cancer are either unscreened or underscreened. The mean time since last negativebenign cytology for the 7 0 women who had been screened negativebenign previously but not with adequate regularity was 6.8 years (95% confidence interval = 5.7 - 7.9 years). Possible reasons why these women did not have further smears include a negative perception of the previous encounter, a lack of knowledge concerning the importance of repeated testing. and forgetfulness that the next test was due. One could expect a reminder system to help overcome the latter two reasons. Based on the above Victorian information, the potential benefit in terms of preventable morbidity from cervical cancer could be around 25 per cent of the cancers which currently occur.
The Wlshes of Women An acknowledged reason for the limited success of cervical cancer screening to date has been that policy development has often occurred i n isolation from the client population of women.*’ It was therefore encouraging that the Health Department Victoria asked those members of the public health community, who, in 1988. proposed modifications to the Cancer Act to allow the establishment of the Victorian Cervical Cytology Registry, to undertake a community consultation on reaction to the proposed registry. More than 20 organisations representing women were nominated by the Health Department Victoria for consultation. During the consultation, it was proposed to the community groups that the registry could be established in 3 stages. Stage 1, the linking of Pap smear records from all pathology laboratories to assist with the accuracy of reporting and the follow-up of women with abnormalities; Stage 2, the issuing of reminder letters to women when their next test was due (recall letters); and Stage 3. the comparison of the register with a population-based register to identify apparently unscreened women who could be sent a personal letter of invitation (call letters). Support was sought for Stage 1. The overwhelming message from the community groups was that Stages 1 and 2 should be introduced simultaneously. This desire was also reflected in the answers to a question on women’s attitudes to recall letters. The question was included in a 1988 household survey commissioned by the Centre for
MITCHELL
Behavioural Research in Cancer at the AntiCancer Council of Victoria and conducted by the Roy Morgan Research Centre. The question to women was worded as follows: “Many women say they don’t have Papanicolaou smear tests regularly because they forget when the test is due. To overcome this. it has been suggested that all women could be sent a reminder every time their test was due. Would you like to receive a regular reminder to go for a Papanicolaou smear test?” The responses of 600 women were as follows: yes 71 per cent, no 24 per cent, can’t say 5 per cent. (The legislation establishing the Victorian Cervical Cytology Registry has therefore allowed for the simultaneous development of Stages 1 and 2.)
Options for Introducing a Remlnder System What then are the possibilities for issuing reminder letters to the currently screened women when their next smear is due or slightly overdue? There are three existing options for establishing a reminder system for the Australian women who are currently being screened, but each would have major operational difficulties associated with it. ( I ) The Health Insurance Commission Three problems of such magnitude exist to make such an approach unworkable. First. there is considerable political and community resistance against using Government records for such activities. Second, approximately 30 per cent of tests are not billed to the Health Insurance Commission under fee-for-service arrangements, but rather are examined in laboratories which are funded by block grants. Third, in the absence of knowledge of the cytology reports, the Health Insurance Commission would not be aware of the date when the next smear was due. The needs of women for whom early repeat tests have been recommended would not be able to be accommodated by reliance on claims to the Health Insurance Commission. Such women include those with a previous significant abnormality (such as CIN) and women with low-grade current abnormalities which are not sufficiently serious to justify referral for further investigations. Thus a single policy of sending all reminder letters at 3 years would probably be met with widespread criticism that the system seriously disadvantaged a high-risk group and would provide a substantive argument for sending all reminder letters at a much shorter time interval. (2) Laboratories The major difficulty with this approach relates to the large number of laboratories which
128
COMMUNITY HEALTH STUDIES
TABLE 2 Proportion of women using the same and different practitioners for two smears taken 3 years apart by area of residence in Victoria* (a) Melbourne Metropolitan residents
Age (PSI c 29 30-39 40-49 50-59 > 59
Same Practitloner
Different Practitioner 57%
43% 46% 59% 61% 56%
54% 41% 39% 44%
Total 288 417 263 140 71
(b) Non-Metropolitan residents
Different Practitioner
Same Practitioner
c 29 30-39 4049 50-59 > 59
*
53% 48% 42% 36% 3wo
47% 52% 58% 64% 70%
Total 194 289 176 72 66
Excludes 24 women for whom no home address was supplied to the delivery system for health care in Australia, women do not 'belong' to an individual practitioner. There is evidence from a randomly selected sample of 2000 women who had two smears three years apart (1985 and 1988) with the VCGS, that an average of 4 8 per cent had changed practitioners during this time interval. (See Table 2). A greater proportion of women resident in the Melbourne metropolitan area (50%. 583/1179) changed their practitioner than women resident outside the metropolitan area (45%. 360/797), possibly reflecting the greater choice of practitioners in a capital city. Older women were less likely than younger women to have changed their practitioner.
currently report on smears. More than 200 laboratories bill the Health Insurance Commission for cervical cytology. When a woman is due or slightly overdue for her next smear, the original laboratory does not know if she has had a smear reported in another laboratory. Some laboratories currently attempt to ensure that women for whom they have recommended early repeat cytology because of abnormalities are rescreened at an appropriate interval. In general, laboratories find this process entails a considerable workload because of the number of laboratories to which smears are sent. Extending the process to all women would be labour intensive and cost inefficient. This situation of multiple laboratories reporting on smears does not have to disadvantage the potential success of screening in Australia provided record linkage of results for individual women can still occur. Another potential problem with laboratories issuing reminder letters is that the laboratory may be seen to be 'looking for business' and thus be in difficulty with both practitioners and the Health Insurance Commission.
The Need for Cervical Cytology Registers In the light of the above difficulties, if a comprehensive reminder system is considered desirable, there appears to be no alternative but to establish a register of the women having smears in each Statenemtory and to issue reminder letters from information held on the register. The establishment and use of a computerised register for recall was a recommendation of the Report of the Cervical Cancer Inquiry by Judge Cartwright in New Zealand recently.' Such registers could be established voluntarily by women, or by signed
(3) The practitioner taking the smear This is an unworkable proposition. With the patient's free choice of a practitioner being central
MITCHELL
129
COMMUNITY HEALTH STUDIES
reminder letters to women when they are due for their next test. We await eagerly the opportunity to trial the impact of such letters. The VCGS has already documented that reminder letters sent to medical practitioners about women who appear to be overdue for an early repeat test in view of a preceding abnormality achieve a good response.' Furthermore, it is encouraging that both the VCGS study and a trial of personal letters of invitation to women in a socially underprivileged population in England documented a better response among older women - the age group at highest risk of cervical cancer?*'O
consent on each occasion a woman has a Pap smear, or by legislation to enable laboratories to report relevant information to a central registry. A voluntary system established by women would probably be used PreQminantly by the better educated women of the community. The impact on the morbidity and mortality of cervical cancer at a population level could be expected to be low. Signed consent each time a Pap smear was taken would entail a minimum of 1.5 million consent forms every year if a 3 year screening interval was adopted in Australia. A shorter rescreening interval would necessitate a proportionately greater number of consent forms. The logistics of such an approach are daunting. On every occasion that a woman had a smear, the practitioner would have to inform the woman of the issues, offer a choice of participation, and have the consent form signed accordingly. This would add considerably to the consultation time, and may act as a disincentive to doctors to broach the issue of Pap smear screening with previously unscreened women - yet these are the very women who should be encouraged to have smears. Faultless passage would then be necessary between the practitioner, the laboratory and the registry, otherwise a Consenting woman whose result was not registered would have the potcntid to sue the practitioner and/or laboratory for actual'or possible damage to her health. It would be surprising indeed if such a system had m y real possibility of having an impact on the morbidity and mortality from cervical cancer. It would be even more surprising if such a system was popular with general practitioners and laboratories. Legislation to enable laboratories to forward identifying information for the woman and the smear report to a registry would seem the only viable approach. Each woman should be informed about the registry and have the option of not participating if she so desires. While there are some who may be hesitant about introducing such a system, the alternative may be to restrict the reporting of smears within each State/"erritory to one laboratory and to base the reminder system on this single laboratory. The amendments to the Cancer Act in Victoria which have allowed the establishment of the Victorian Cervical Cytology Registry state that one of the functions of the registry is to send
MITCHELL
Dlscusslon There appear to be a number of steps which would facilitate regular attendance by Australian women for Pap smear screening throughout adult life. Fmt, careful attention should be paid to what women state would facilitate regular attendance. This is of particular importance to the neverscreened group for whom a reminder system offers no direct benefit. If, for example, the availability of female practitioners is nominated as a key issue, we should attempt wherever possible to meet that request. Second, for maximal impact, all public education messages concerning the rescreening interval should be simple and consistent. They should be reinforced by clinicians and health educators in their contact with women. Third, we should trial different 'marketing strategies' for our product. We do not advocate that women take the oral contraceptive pill two or three times a day, in the hope that they will take it once. Rather we package the product in a manner which facilitates appropriate use. We should evaluate the use of comparable techniques for screening tests. Reminders letters are one such technique. Acknowledgements The assistance of the Victorian Cancer Registry, the Centre for Behavioural Studies in Cancer of the Anti-Cancer Council of Victoria, and the Medical Statistics Branch of the Commonwealth Department of Community Services and Health is gratefully acknowledged. This research was supported in part by grants from the National Health and Medical Research Council and the Anti-Cancer Council of Victoria.
130
COMMUNITY HEALTH STUDIES
References 1. 2.
3.
4.
5.
Day NE. Screening for cancer of the cervix. J Epid COM Health 1989; 43~103-6. IARC Working Group on evaluation of cervical cancer screening programmes. Screming for squamous cell cancer: duration of low risk after negative results of cervical cytology and its implication for screening policies. Br Med J 1986; 293:659-64. Chamberlain J. Reasons that some screening programmes fail to control cervical cancer. Screening for cancer of the uterine cervix. Lyon: IARC Scientific Publication No 76:3741; 161-8. Report: Screening for cervical cancer. Screening for cancer of the uterine cervix. Lyon: IARC Scientific Publication No 76:3741; 289. Momcer Y. Kirk S. Call and recall. Report on a survey of the implementation of
MITCHELL
6. 7. 8.
9. 10.
131
cervical cytology call and recall in England and Wales. National Association o f Health Authorities. 1988. E d l e y A, Knopf Elkind A, Spencer B et al. Attendance for cervical screening - whose problem? Soc Sci Med 1985; 20955-62. Howard J. "Avoidable mortality" from cervical cancer: exploring the concept. Soc Sci Med 1987; 24:507-14. The report of the cervical cancer inquiry 1988. Auckland: Government Printing Office, 1988; 208. Mitchell H, Medley G. Adherence to recommendations for early repeat cervical smear tests. Br Med J 1989: 298:1605-6. Shroff KJ. Corrigan AM, Bosher M et al. Cervical screening in an inner city area: response to a call system in general practice. Br Med J 1988; 297:1317-8.
COMMUNITY HEALTH STUDIES
Victorian Cytology (Gynaecological) Service, PO Box 2S3B. Melbourne. 3001. Abstract Regular participation in a high-quality screening program by all 'at risk' women is necessary if Australia is to be maximally successful in preventing cervical cancer. This paper discusses the use of reminder letters as one method of facilitating participation. Options for the source of the letters are discussed. I t is concluded that basing the recall letters on a register of previously screened women is the only feasibls approach within the Australian health care system. The impact of reminder letters on achieving regular participation by Australian women remains to be tested. Introduction A critical factor in the potential success of cervical cancer screening is the proportion of 'at risk' women who participate regularly in the screening program throughout adult life. Australia, like many Western countries, has not established a formal screening program, but has been content to rely for the last quarter century on an oppormnistic or passive approach to screening. In recent years, the limitations of such policy decisions have been a topic of increasing concern to women and health professionals, both in Australia and internationally. Reliance on opportunistic screening tends to result in younger women (who are more likely to be having vaginal examinations than older women) being preferentially screened. Fifty-three per cent of the claims for Papanicolaou (Pap) smears to the Health Insurance Commission for the period January-June 1988 were from women aged less than 4 0 years. The risk of cervical cancer in women over 40 years of age has been estimated to be at least 20 times higher than the risk in women aged less than 30 years.' Furthermore, the evidence is that only a low level of protection lasts for more than 5 years after a negative smear and by 10 years the risk of cancer is no different from an unscreened population.' Claims that surgical management of young women with cervical intraepithelial neoplasia (CIN) will be followed by a reduction in the incidence of invasive cancer in later years are
MITCHELL
based on unproven assumptions.' Therefore, intensive screening of young women may not necessarily translate into better health outcomes at older ages. This paper explores one possibility for facilitating regular participation by women personal letters to women for rescreening when their next test is due or slightly overdue (recall letters). Personal letters of invitation have been identified by the World Health Organisation and the Intemational Agency for Research on Cancer as one element of an effective organised screening program.' Computerised call and recall programs are currently being introduced throughout England and Wales.' The first recommendation of the Australian Health Ministers' Advisory Council (AHMAC) working party on cervical cancer screening (November 1987) was "that a calvrecall mechanism is an essential part of a national cervical cancer screening strategy".
Current Screening Frequency in Australia The best current evidence on the frequency with which Australian women are screened comes from claims to the Health Insurance Commission for Pap smears. Of the women aged less than 70 years who made a claim for a Papanicolaou smear during the month of April 1985. 18 per cent made one or more further claims for smears during the next 12 months, 54 per cent during the next 24 months, and 80 per cent during the next 36 months. These encouraging retum rates have been achieved in a climate of unprecedented publicity about cervical cancer screening. Nevertheless, it is worrying that by 3 years, two out of 10 screened women had not been rescreened. In view of a less than 2 per cent cumulative lifetime risk of cervical cancer.' it is also disturbing that almost one in 5 of the screened women were rescreened again within 12 months. Such intensive rescreening is costly, providing little benefit to the community. We have wanted to believe that an opportunistic approach whereby a doctor takes a smear when a woman consults h i m h e r for a health problem would be a satisfactory approach to a public health issue. It is not. An appropriately
126
COMMUNITY HEALTH STUDIES
TABLE 1 VCGS screening history of women who were diagnosed with cervical cancer In 19ss by age group
A*
No. d
(Yd
women
20-29 30-39
40-49 50-59 60-69 > 69 Total
23 61 41 47 54
44
270
Screening history
Negative/benign CYtOloeY
Abnormal cytology
CYtOlosY
3wo 48% 34% 32% 19% 9%
4% 16% 24% 13% 17% 0%
57% 36% 42% 55% 65% 91%
81 (304b)
36 (13%)
153 (57%)
(the majority of which are diagnostic smears taken in the context of symptoms), 30 per cent (81/270) of the women had one or more negative/benign smears with the Victorian Cytology Gynaecological Service (VCGS) prior to the diagnosis of cancer, 13 per cent (36/270) of the women had abnormal cytology at some preceding time, and 57 per cent (153/270) had no previous cytology with the VCGS. Table 1 shows the screening histories by age-group for these women. For the 81 women who had negativelbenign cytology reports preceding their diagnosis of malignancy, an analysis was undertaken of the adequacy of their screening history. An adequate screening history was defmed as one where the woman had three or more negative/benign smear reports issued during the preceding 10 years. and where an interval of at least 2 years separated each of three smears. During this time period the VCGS reported most Victorian Pap smears; the lack of MYcentralised record system in Australia prior to the introduction of Medicare in 1984 precludes a precise numeric estimate. By this definition, 11 of the 81 women had an adequate screming history. The distribution of malignancy type in these 11 women was as follows: 4 microinvasive CMCC~S. 4 invasive squamous cell carcinomas (2 Stage 1B. 1 Stage 2, 1 unknown stage). 1 adenosquamous cell carcinoma, and 2 adCnOCarCinOmrS. Thus a minimum of 4 per cent ( l l n 7 0 ) of the women with cervical cancer appeared to have developed malignancy despite an adequate screening history. The proportion is a minimum estimate. as some of the 270 women will have been screened in other Victorian laboratories. By
regular screening pattern (that is. one which is neither too frequent nor too infrequent) cannot be maintained throughout adult life by utilizing consultations for random episodes of sickness. Although more than 80 per cent of women consult a doctor at least once during a 12 month period. they do so primarily because they are 'ill'. One must question whether episodes of 'illness' are an appropriate time for the collection of Pap smears. In very recent times with increasing concern over false-negative reports and rapid onset cancer, there has been much support for the idea that annual Pap smear screening is necessary. Policies such as this are difficult to justify on the basis of cost - both financial and emotional. Annual Pap smear screening would involve approximately 50 tests for each woman during her adult life. We have no evidence that the majority (or even a minority) of Australian women have the necessary stamina to undergo 50 tests. It is likely that many would tire and no longer continue with screening -often at a time in their lives when their risk of cervical cancer is beginning to become substantial.
Screening Frequency of Women wlth Cervical Cancer Some indication as to what a reminder system might achieve can be gained from a review of the screening history of women who were recently diagnosed with cervical cancer. Two hundred and seventy one women were registered with the Victorian Cancer Registry for 1985, the last year for which registrations are complete. One woman has subsequently had an incorrect registration deleted. Excluding smears taken within 12 months of the diagnosis of cancer
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COMMUNrrY HEALTH STUDIES
contrast, 26 per cent (70/270) of the women had some contact with the VCGS in a screening capacity, but not with sufficient regularity. Overwhelmingly the evidence is that most women who are diagnosed with cervical cancer are either unscreened or underscreened. The mean time since last negativebenign cytology for the 7 0 women who had been screened negativebenign previously but not with adequate regularity was 6.8 years (95% confidence interval = 5.7 - 7.9 years). Possible reasons why these women did not have further smears include a negative perception of the previous encounter, a lack of knowledge concerning the importance of repeated testing. and forgetfulness that the next test was due. One could expect a reminder system to help overcome the latter two reasons. Based on the above Victorian information, the potential benefit in terms of preventable morbidity from cervical cancer could be around 25 per cent of the cancers which currently occur.
The Wlshes of Women An acknowledged reason for the limited success of cervical cancer screening to date has been that policy development has often occurred i n isolation from the client population of women.*’ It was therefore encouraging that the Health Department Victoria asked those members of the public health community, who, in 1988. proposed modifications to the Cancer Act to allow the establishment of the Victorian Cervical Cytology Registry, to undertake a community consultation on reaction to the proposed registry. More than 20 organisations representing women were nominated by the Health Department Victoria for consultation. During the consultation, it was proposed to the community groups that the registry could be established in 3 stages. Stage 1, the linking of Pap smear records from all pathology laboratories to assist with the accuracy of reporting and the follow-up of women with abnormalities; Stage 2, the issuing of reminder letters to women when their next test was due (recall letters); and Stage 3. the comparison of the register with a population-based register to identify apparently unscreened women who could be sent a personal letter of invitation (call letters). Support was sought for Stage 1. The overwhelming message from the community groups was that Stages 1 and 2 should be introduced simultaneously. This desire was also reflected in the answers to a question on women’s attitudes to recall letters. The question was included in a 1988 household survey commissioned by the Centre for
MITCHELL
Behavioural Research in Cancer at the AntiCancer Council of Victoria and conducted by the Roy Morgan Research Centre. The question to women was worded as follows: “Many women say they don’t have Papanicolaou smear tests regularly because they forget when the test is due. To overcome this. it has been suggested that all women could be sent a reminder every time their test was due. Would you like to receive a regular reminder to go for a Papanicolaou smear test?” The responses of 600 women were as follows: yes 71 per cent, no 24 per cent, can’t say 5 per cent. (The legislation establishing the Victorian Cervical Cytology Registry has therefore allowed for the simultaneous development of Stages 1 and 2.)
Options for Introducing a Remlnder System What then are the possibilities for issuing reminder letters to the currently screened women when their next smear is due or slightly overdue? There are three existing options for establishing a reminder system for the Australian women who are currently being screened, but each would have major operational difficulties associated with it. ( I ) The Health Insurance Commission Three problems of such magnitude exist to make such an approach unworkable. First. there is considerable political and community resistance against using Government records for such activities. Second, approximately 30 per cent of tests are not billed to the Health Insurance Commission under fee-for-service arrangements, but rather are examined in laboratories which are funded by block grants. Third, in the absence of knowledge of the cytology reports, the Health Insurance Commission would not be aware of the date when the next smear was due. The needs of women for whom early repeat tests have been recommended would not be able to be accommodated by reliance on claims to the Health Insurance Commission. Such women include those with a previous significant abnormality (such as CIN) and women with low-grade current abnormalities which are not sufficiently serious to justify referral for further investigations. Thus a single policy of sending all reminder letters at 3 years would probably be met with widespread criticism that the system seriously disadvantaged a high-risk group and would provide a substantive argument for sending all reminder letters at a much shorter time interval. (2) Laboratories The major difficulty with this approach relates to the large number of laboratories which
128
COMMUNITY HEALTH STUDIES
TABLE 2 Proportion of women using the same and different practitioners for two smears taken 3 years apart by area of residence in Victoria* (a) Melbourne Metropolitan residents
Age (PSI c 29 30-39 40-49 50-59 > 59
Same Practitloner
Different Practitioner 57%
43% 46% 59% 61% 56%
54% 41% 39% 44%
Total 288 417 263 140 71
(b) Non-Metropolitan residents
Different Practitioner
Same Practitioner
c 29 30-39 4049 50-59 > 59
*
53% 48% 42% 36% 3wo
47% 52% 58% 64% 70%
Total 194 289 176 72 66
Excludes 24 women for whom no home address was supplied to the delivery system for health care in Australia, women do not 'belong' to an individual practitioner. There is evidence from a randomly selected sample of 2000 women who had two smears three years apart (1985 and 1988) with the VCGS, that an average of 4 8 per cent had changed practitioners during this time interval. (See Table 2). A greater proportion of women resident in the Melbourne metropolitan area (50%. 583/1179) changed their practitioner than women resident outside the metropolitan area (45%. 360/797), possibly reflecting the greater choice of practitioners in a capital city. Older women were less likely than younger women to have changed their practitioner.
currently report on smears. More than 200 laboratories bill the Health Insurance Commission for cervical cytology. When a woman is due or slightly overdue for her next smear, the original laboratory does not know if she has had a smear reported in another laboratory. Some laboratories currently attempt to ensure that women for whom they have recommended early repeat cytology because of abnormalities are rescreened at an appropriate interval. In general, laboratories find this process entails a considerable workload because of the number of laboratories to which smears are sent. Extending the process to all women would be labour intensive and cost inefficient. This situation of multiple laboratories reporting on smears does not have to disadvantage the potential success of screening in Australia provided record linkage of results for individual women can still occur. Another potential problem with laboratories issuing reminder letters is that the laboratory may be seen to be 'looking for business' and thus be in difficulty with both practitioners and the Health Insurance Commission.
The Need for Cervical Cytology Registers In the light of the above difficulties, if a comprehensive reminder system is considered desirable, there appears to be no alternative but to establish a register of the women having smears in each Statenemtory and to issue reminder letters from information held on the register. The establishment and use of a computerised register for recall was a recommendation of the Report of the Cervical Cancer Inquiry by Judge Cartwright in New Zealand recently.' Such registers could be established voluntarily by women, or by signed
(3) The practitioner taking the smear This is an unworkable proposition. With the patient's free choice of a practitioner being central
MITCHELL
129
COMMUNITY HEALTH STUDIES
reminder letters to women when they are due for their next test. We await eagerly the opportunity to trial the impact of such letters. The VCGS has already documented that reminder letters sent to medical practitioners about women who appear to be overdue for an early repeat test in view of a preceding abnormality achieve a good response.' Furthermore, it is encouraging that both the VCGS study and a trial of personal letters of invitation to women in a socially underprivileged population in England documented a better response among older women - the age group at highest risk of cervical cancer?*'O
consent on each occasion a woman has a Pap smear, or by legislation to enable laboratories to report relevant information to a central registry. A voluntary system established by women would probably be used PreQminantly by the better educated women of the community. The impact on the morbidity and mortality of cervical cancer at a population level could be expected to be low. Signed consent each time a Pap smear was taken would entail a minimum of 1.5 million consent forms every year if a 3 year screening interval was adopted in Australia. A shorter rescreening interval would necessitate a proportionately greater number of consent forms. The logistics of such an approach are daunting. On every occasion that a woman had a smear, the practitioner would have to inform the woman of the issues, offer a choice of participation, and have the consent form signed accordingly. This would add considerably to the consultation time, and may act as a disincentive to doctors to broach the issue of Pap smear screening with previously unscreened women - yet these are the very women who should be encouraged to have smears. Faultless passage would then be necessary between the practitioner, the laboratory and the registry, otherwise a Consenting woman whose result was not registered would have the potcntid to sue the practitioner and/or laboratory for actual'or possible damage to her health. It would be surprising indeed if such a system had m y real possibility of having an impact on the morbidity and mortality from cervical cancer. It would be even more surprising if such a system was popular with general practitioners and laboratories. Legislation to enable laboratories to forward identifying information for the woman and the smear report to a registry would seem the only viable approach. Each woman should be informed about the registry and have the option of not participating if she so desires. While there are some who may be hesitant about introducing such a system, the alternative may be to restrict the reporting of smears within each State/"erritory to one laboratory and to base the reminder system on this single laboratory. The amendments to the Cancer Act in Victoria which have allowed the establishment of the Victorian Cervical Cytology Registry state that one of the functions of the registry is to send
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Dlscusslon There appear to be a number of steps which would facilitate regular attendance by Australian women for Pap smear screening throughout adult life. Fmt, careful attention should be paid to what women state would facilitate regular attendance. This is of particular importance to the neverscreened group for whom a reminder system offers no direct benefit. If, for example, the availability of female practitioners is nominated as a key issue, we should attempt wherever possible to meet that request. Second, for maximal impact, all public education messages concerning the rescreening interval should be simple and consistent. They should be reinforced by clinicians and health educators in their contact with women. Third, we should trial different 'marketing strategies' for our product. We do not advocate that women take the oral contraceptive pill two or three times a day, in the hope that they will take it once. Rather we package the product in a manner which facilitates appropriate use. We should evaluate the use of comparable techniques for screening tests. Reminders letters are one such technique. Acknowledgements The assistance of the Victorian Cancer Registry, the Centre for Behavioural Studies in Cancer of the Anti-Cancer Council of Victoria, and the Medical Statistics Branch of the Commonwealth Department of Community Services and Health is gratefully acknowledged. This research was supported in part by grants from the National Health and Medical Research Council and the Anti-Cancer Council of Victoria.
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References 1. 2.
3.
4.
5.
Day NE. Screening for cancer of the cervix. J Epid COM Health 1989; 43~103-6. IARC Working Group on evaluation of cervical cancer screening programmes. Screming for squamous cell cancer: duration of low risk after negative results of cervical cytology and its implication for screening policies. Br Med J 1986; 293:659-64. Chamberlain J. Reasons that some screening programmes fail to control cervical cancer. Screening for cancer of the uterine cervix. Lyon: IARC Scientific Publication No 76:3741; 161-8. Report: Screening for cervical cancer. Screening for cancer of the uterine cervix. Lyon: IARC Scientific Publication No 76:3741; 289. Momcer Y. Kirk S. Call and recall. Report on a survey of the implementation of
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6. 7. 8.
9. 10.
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cervical cytology call and recall in England and Wales. National Association o f Health Authorities. 1988. E d l e y A, Knopf Elkind A, Spencer B et al. Attendance for cervical screening - whose problem? Soc Sci Med 1985; 20955-62. Howard J. "Avoidable mortality" from cervical cancer: exploring the concept. Soc Sci Med 1987; 24:507-14. The report of the cervical cancer inquiry 1988. Auckland: Government Printing Office, 1988; 208. Mitchell H, Medley G. Adherence to recommendations for early repeat cervical smear tests. Br Med J 1989: 298:1605-6. Shroff KJ. Corrigan AM, Bosher M et al. Cervical screening in an inner city area: response to a call system in general practice. Br Med J 1988; 297:1317-8.
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