Referral Patterns for Gynaecologic Cancers and Precancerous Conditions

REFERRAL PATTERNS FOR GYNAECOLOGIC CANCERS AND PRECANCEROUS CONDITIONS Anna Gagliardi, MSc, MLS,' Denny DePetrillo, MD, FRCSC,' Laurie Elit, MD, MSc, FRCSC2 I Surgical

Oncology, Cancer Care Ontario

2Division of Gynecologic Oncology, McMaster University, Hamilton ON

Abstract Objectives: (I) To determine a gynaecologist's preference for delivering primary surgical care to women with gynaecologic cancer or precancerous conditions; (2) to determine referral patterns for gynaecologic cancers and precancerous conditions; (3) to outline barriers to the current gynaecologic oncology service provision in Ontario; (4) to understand, from a gynaecologist's perspective, the acceptable waiting times from referral to subspecialty consultation; and (5) to determine a gynaecologist's interest in following patients after more specialized management for gynaecologic cancer. Methods: The survey instrument was designed and pretested. The survey was mailed to 541 gynaecologists in Ontario. Results: The response rate was 49.4%. Of the gynaecologists who responded, 75.3% trained in Ontario; 57.3% had community-based practices; and 55% indicated they surgically treated women with invasive cancers. The invasive cases treated most commonly were endometrial cancer (96.4%), followed by ovarian cancer (86.1 %). Ninety-one percent of gynaecologists referred their patients to the closest cancer centre with a gynaecologic oncologist on staff. Seventy-five percent of gynaecologists were interested in delivering follow-up care for women who had treatment for cancer, provided that followup guidelines were made available. Conclusion: Gynaecologists were interested in providing followup care to women who received cancer care by subspecialists. Gynaecologists requested continuing education on gynaecologic cancers and guidelines for follow-up care. Issues surrounding the process of referral and communication with gynaecologists were seen as areas for improvement. The results of this survey will be pivotal in setting goals for a provincial gynaecologic oncology program.

(2) decouvrir comment les medecins dirigent leurs patientes vers un specialiste en cas de cancer gynecologique ou d'etat precancereux; (3) decrire les obstacles auxquels fait actuellement face I'offre de services en oncologie gynecologique en Ontario; (4) comprendre, d'un point de vue gynecologique, les delais acceptables pour la consultation d'un specialiste; et (5) preciser I'interet qu'ont les gynecologues a suivre une patiente apres qu'elle a rec;:u un traitement plus specialise pour un cancer gynecologique. Methodes: Le questionnaire de sondage a ete mis au point et pre-teste et il a ete distribue par la poste a 541 gynecologues de l'Ontario. Resultats : Le taux de reponse a ete de 49.4 %. Parmi les gynecologues qui ont repondu, 75,3 % avaient ete formes en Ontario; 57,3 % pratiquaient en milieu communautaire; et 55 % ont indique qu'ils avaient pratique des interventions chirurgicales pour traiter des femmes atteintes d'un cancer envahissant. Les cas Ie plus souvent traites etaient Ie cancer endometrial (96,4 %) et Ie cancer ovarien (86, I %). Quatre-vingtonze pour cent des gynecologues dirigeaient leurs patientes vers Ie centre de cancer Ie plus pres OU il Y avait un oncologue-gynecologue au sein du personnel. Soixante-quinze pour cent des gynecologues s'interessaient a fournir des soins de suivi aux femmes apres un traitement pour Ie cancer, a condition que des directives soient enoncees a ce sujet. Conclusion : Les gynecologues etaient disposes a offrir des soins de suivi aux femmes traitees pour un cancer par un specialiste. lis demandent cependant qu'on leur offre une formation continue sur les cancers gynecologiques et des directives sur les soins de suivi. lis voient Ie besoin d'ameliorer la fac;:on dont les patientes sont dirigees vers un specialiste et la communication avec les gynecologues. Les resultats de ce sondage serviront de base a la definition d'objectifs pour un programme provincial d'oncologie gynecologique.

Resume Objectifs : (I) Connaitre les preferences des gynecologues pour les soins chirurgicaux primaires a offrir aux femmes atteintes d'un cancer ou dans un etat precancereux gynecologique;

J Obstet Gynaecol Can 2002;24(7):553-8. INTRODUCTION

KeyWords Gynaecology, female genital neoplasms, referral and consultation, questionnaires Competing interests: None declared. Received on February 20, 2002 Revised and accepted on April 9,2002

In Ontario, a woman with a gynaecologic problem accesses the medical system through her family physician. If she has a gynaecologic precancerous condition or cancer, the family physician refers her to a gynaecologist. This specialist may choose to provide ongoing care. In some circumstances, the woman is further referred to a gynaecologic oncologist or a

JOGC.

JULY 2002

multidisciplinary team with special training in gynaecologic cancers. Gynaecologic oncology has been a subspecialty in Ontario since 1973, and there are 6 regional cancer centres from which gynaecologic oncologists provide consultative services or multidisciplinary care as part of the Cancer Care Ontario Surgical Oncology Network. The mandate of the Cancer Care Ontario Surgical Oncology Network is to improve cancer patient access to multidisciplinary consultation and treatment. This mandate can only be achieved through a program of synergistic activities, including research to investigate the patterns of current practice; development of decision-making resources such as practice guidelines; and enhanced communication between clinicians in different practice settings, with the ultimate goal of providing cancer care either close to home or in conjunction with a cancer centre, depending on what is appropriate for each case. For cancer care, it makes sense to explore the organization of services, practice patterns, and outcomes of care on a diseasesite basis. Gynaecologic cancer care offers a useful model by which to examine issues related to communication and shared patient care, because initial care is generally provided by a gynaecologist, and more complex cancer care, particularly for those cases involving sutgery, is conducted by a small group of gynaecologic oncologists associated with regional cancer centres. A survey was conducted to assess gynaecologists' opinions about the communication process for women with a gynaecologic precancerous condition or cancer. The objectives of the survey were: (1) to determine the gynaecologist's preference for delivering primary surgical care to women with a gynaecologic precancerous condition or cancer; (2) to map the preferred referral patterns to subspecialists; (3) to outline barriers to the current gynaecologic oncology service provision in Ontario; (4) to understand acceptable waiting times for consultation from a gynaecologist's perspective; and (5) to determine gynaecologists' level of interest in following patients after more specialized management for gynaecologic cancers. METHODS

A survey instrument was designed to record respondent demographics, practice characteristics, referral patterns, the barriers to referral, consultation waiting times, and willingness to provide follow-up care. The demographic information gathered included the year respondents had completed obstetrics and gynaecology training; the university where they had done their residency training; and characteristics of their current practice, including community or university affiliation, the proportion of pre-invasive and invasive cancers seen (5-point scale), whether colposcopy was a component of their practice, and the proportion of each gynaecologic cancer they personally treated surgically (5-point scale). To understand referral practices, the gynaecologists were asked to indicate the closest canJOGC

cer centre, the centre to which they refer, whether they refer to an individual or a group subspecialty practice, factors that influence their referral pattern (5 possible responses, with the option to write comments), and methods of communication with the gynaecologic oncologist. There were 4 open-ended questions addressing barriers to and positive aspects of the current referral system, and suggestions for improvements to the system. Satisfaction with the referral physician, communication, and follow-up care was rated on a 7-point Likert scale (1 - very high level of satisfaction; 4 - no opinion; 7 - very low level of satisfaction). An open-ended question addressed the perceived acceptable waiting time for consultation of a woman with a pelvic mass and ascites, newly diagnosed cervical cancer, and postoperative endometrial cancer. A single question addressed the gynaecologist's interest in assuming follow-up care. The survey was pretested for comprehension and acceptability by 8 of 16 Ontario gynaecologic oncologists and 2 community-based gynaecologists. The survey took 5 minutes to complete. The respondents indicated that the questionnaire was easy to read, but suggested the allocation of more space for written comments. The questionnaire was amended to facilitate this. According to the Ontario Medical Association, at the time of the survey, there were 541 gynaecologists in the province. The survey was mailed to these gynaecologists on two occasions (March 1, 2000 and March 31,2000). Survey feedback was entered into an Excel spreadsheet and then exported to the Statistical Package for the Social Sciences (SPSS) version 10.0 (SPSS, Chicago, IL, USA) for statistical analysis. Frequencies were generated. Written comments were summarized and assessed for trends. RESULTS

DEMOGRAPHICS

Of the 541 surveys mailed, 267 (49.4%) were returned by mail or fax. Of respondent gynaecologists, 31.8% obtained fellowship certification between 1980 and 1989; 28.5% between 1990 and 1999; 25.5% between 1970 and 1979; 10.0% between 1960 and 1969; and 4.0% between 1950 and 1959. Most gynaecologists (75.3%) received their training in obstetrics and gynaecology in Ontario, with 33.0% receiving their training at the University of Toronto, 16.5% at the University of Western Ontario, 12.7% at McMaster University, 7.1 % at the University of Ottawa, and 6.0% at Queen's University. The remaining 24.3% of gynaecologists trained in other Canadian or American programs. More than half of the respondents (57.3%) worked out of a community hospital and 36.0% practiced in an academic centre. Sixty-seven percent of gynaecologists provided ambulatory care in private offices and 39.0% in hospital-based clinics; 6.0% reported clinics in both environments.

l1li

JULY 2002

CHARACTERISTICS OF GYNAECOLOGIC PRACTICES

Seventy-three percent of gynaecologists indicated that they personally treated pre-invasive gynaecologic diseases. Of these, 79% said that 1% to 25% of their practice consisted of cases of pre-invasive disease (Table 1). Sixty-three percent performed colposcopy. Of those who did not perform colposcopy, 52.2% referred patients to a colposcopy clinic, 32.2% to a gynaecologic oncologist, and 15.6% to other general gynaecologists. Seventy-nine percent of responding gynaecologists indicated that they encountered women with invasive gynaecologic cancers in their practice. Of these, 76.1 % said that invasive cancer comprised 1% to 25% of their practice. Some physicians diagnosed cancer and then referred patients, while others actually treated invasive cancers (55%). Of those who said they treated invasive cancers, 96.4% treated cancer of the endometrium and 86.1 % treated cancers of the ovary or fallopian tube. Of those who performed endometrial cancer surgery, 24.0% reported it made up 51 % to 75% of their practice, and 33.0% indicated that it made up 76% to 100% of their practice. Of those who treated ovarian/fallopian tube cancer, 42.0% said it made up 1% to 25% of their practice, 13.0% said it made up 26% to 50% of their practice; 12.0% said it made up 51 % to 75% of their practice; and 19.0% said it made up 76% to 100% of their practice. Most of the respondents did not treat invasive cancers of the vulva (84.0%), vagina (90.2%), or cervix (78.5%), or gestational trophoblastic neoplasias (46.0%). REFERRAL PATTERNS

Geographically, the closest cancer centres to the respondents were Toronto-Sunnybrook Regional Cancer Centre (36.0%), Princess Margaret Hospital (31.1 %), Hamilton Regional Cancer Centre (19.9%), London Regional Cancer Centre (16.1 %), Ottawa Regional Cancer Centre (9.4%), and Kingston Regional Cancer Centre (5.2%). Current referrals, indicated by one or more responses, are to Princess Margaret Hospital (56.2%), TorontoSunnybrook Regional Cancer Centre (38.6%), Hamilton Regional Cancer Centre (19.9%), London Regional Cancer Centre (18.0%), Ottawa Regional Cancer Centre (10.1 %), and

TABLE I CHARACTERISTICS OF GYNAECOLOGIC PRACTICES

Proportion of practice

TABLE 2 PROPORTION OF REFERRALS TO A GEOGRAPHICALLY CLOSEST CENTRE

Cancer centre

Respondents for whom this is nearest centre n (%)

Respondents who usually refer to nearest centre n (%)

Hamilton *

53 (19.9)

46 (86.8)

Kingston *

14 (5.2)

14 (100.0)

London *

43 (16.1)

39 (90.7)

Ottawa *

25 (9.4)

25 (100.0)

83 (31.1)

76 (91.6)

12 (4.5)

3 (25.0)

96 (36.0)

85 (88.5)

Thunder Bay

3 (1.1)

I (33.3)

Windsor

6 (2.2)

o (0.0)

Princess Margaret* Sudbury Toronto-Sunnybrook*

*Centres offering gynaecologic oncology services

Kingston Regional Cancer Centre (6.0%). The relationship between proximity to a cancer centre and preference for centre referral was further examined (Table 2). The majority of gynaecologists in close proximity to centres with gynaecologic oncology services usually refer to those centres (range 87.0%-100%). The referral rates to nearest centres lacking a gynaecologic oncologist are much lower: North Western Ontario Regional Cancer Centre (33.0%), North Eastern Ontario Regional Cancer Centre (25.0%), and Windsor Regional Cancer Centre (0%). Respondents indicated that the following factors were considered when a patient was referred (Table 3): proximity of the cancer centre (77.5%), relationship with the centre (65.9%),

TABLE 3 GYNAECOLOGISTS' REFERRAL PATTERNS

Site/Professional

Responses • Percent (n) (%)

Individual gynaecologic oncologist

114

42.7

Team of gynaecologic oncologists

151

56.6

Multidisciplinary gynaecologic cancer team at a cancer centre

112

41.9

Radiation oncology service

43

16.1

Individual medical oncologist

12

4.5

Team of medical oncologists at a cancer centre

29

10.9

7

2.6

Pre-invasive cancer (n = 262) No. (%)

Invasive cancer (n=251) No. (%)

17 (6.5)

53 (21.1)

208 (79.4)

191 (76.1)

26-50

24 (9.2)

3 (1.2)

51-75

4 (1.5)

I (0.4)

"Anyone I can contact"

76-100

9 (3.4)

3 (1.2)

*Respondents could choose more than one option.

0 1-25

JOGC _JULY 2002

availability of the gynaecologic oncologist's opinion (55.4%), and patient's choice (35.0%). Of the respondents, 56.6% referred to a gynaecologic oncology team, 42.7% to an individual gynaecologic oncologist, and 41.9% to a multidisciplinary team. Patients are rarely referred directly to a radiation oncology service (16.1 %), medical oncology team (10.9%), or individual medical oncologist (4.5%), as few gynaecologists in close proximity to centres not having gynaecologic oncologists (North Western Ontario Regional Cancer Centre, North Eastern Ontario Cancer Centre, and Windsor Regional Cancer Centre) refer patients to those centres. Referral practices are influenced by the rapport with the consultant physician (74.9%); the option to speak to a person rather than an automated message system (61.8%); the timeliness of the appointment (60.7%); the severity of the patient's illness (51.3%); and the ease with which an appointment can be arranged, for example, through a single phone call (47.9%). As indicated in Table 4, 86.5% of respondents prefer to use the telephone when arranging appointments for their patients and 85.4% when they wish direct input from a gynaecologic oncologist. Fax was the next preferred option for arranging appointments (44.6%) and for communicating with the consultant gynaecologic oncologist (20.2%). TABLE 4

PREFERRED METHOD FOR COMMUNICATION WITH PHYSICIAN TO WHOM PATIENT IS BEING REFERRED Arranging Communication Method referral with consultant physician appointment n (%) n (%) Letter (regular mail)

27 (10. 1)

21 (7.9)

Telephone

231 (86.5)

228 (85.4)

Fax

119 (44.6)

54 (20.2)

10 (3.7)

6 (2.2)

E-mail

SATISFACTION

Eighty-three percent of respondents were moderately to very satisfied with their ability to refer a patient to an individual gynaecologic oncologist, and 76.0% with their ability to refer to a cancer centre. Seventy-one percent were moderately to very satisfied with the communication they received from the gynaecologic oncologist and 65.1 % with the communication they received from the cancer centre. Sixty percent were moderately to very satisfied with the information that was provided regarding follow-up care and 42.0% with information related to palliative care. The responses to the open-ended questions are summarized in Table 5. Of the 160 respondents (60 .0%) who answered the question on what was required from the cancer centre to conduct follow-up care in a safe, effective manner, 104 requested follow-up guidelines; 74 requested complete and timely information on pathology and on treatment received by the patient; and 13 suggested direct communication with the consultant in case of emergency. Of the 76 respondents (29.0%) who answered the question about problems with the current system, 43 described problems with the referral process itself, such as long waiting time for an appointment, lack of standardization in processes between centres, loss of patients to the tertiary centre, and factors related to the logistics of setting up the appointment; 33 noted problems with timely receipt of information about the patient's treatment, operation room notes, and pathology report; 6 cited difficulty in communicating directly with the treating gynaecologic oncologist; and 4 cited lack of follow-up guidelines. Of the 63 respondents (24.0%) who offered possible solutions to address these problems, 20 respondents requested a simplified referral process, 19 thought that direct communication with the consulting gynaecologic oncologist would be useful, 18 noted that timely documentation from the cancer centre on treatment and outcome was important, and 11 respondents requested follow-up guidelines.

TABLE 5

Subject of comment Respondents n (% of all respondents)

SUMMARY OF WRITTEN RESPONSES Current perceived Factors enabling problems* follow-up*

Suggested solutions*

76 (28.5)

63 (23.6)

74

33

18

104

4

II

13

6

19

Referral process

7

43

20

Continuing education

3

N/A

4

Patient consult or treatment information received in timely manner Guidelines for follow-up Direct communication with consultant in case of emergency

* A single

160 (59.9)

respondent may have comments on more than one subject. N/A: Not applicable.

JOGC.

JULY 2002

WAITING TIME FOR CONSULTATION

The respondents recommended that the median acceptable number of working days for a woman to wait for consultation be 7 days for a pelvic mass and ascites; 14 days for newly diagnosed cervical cancer; and 30 days for postoperative management of endometrial cancer. FOLLOW-UP

Seventy-five percent of respondents were willing to conduct follow-up on their patients and 95.0% of these were willing to provide the cancer centre with copies of their notes. There was a clear request for guidelines and protocols to facilitate follow-up visits and tests, and for a standardized chart. The physicians requested either rounds or an annual clinical day to discuss changes in treatment recommendations (Table 5). DISCUSSION

This survey was completed by 49.4% of the gynaecologists in Ontario, which is an acceptable rate for a survey of physicians. The respondents were representative of all regions of Ontario and from all age groups, although there were fewer respondents from those regions lacking gynaecologic oncology services. The hope is that these responses represent the prevailing sentiment, but it must be acknowledged that these responses could represent extremes of the spectrum, that is, either those most satisfied or most dissatisfied. The results of this survey highlight the major contribution gynaecologists make to the diagnosis and treatment of precancerous and gynaecologic cancers, and reveal current referral patterns, communication issues, and level of satisfaction with the referral process. Gynaecologists have quantified the acceptable waiting times for referral for gynaecologic cancer consultations, and they have clearly indicated a willingness to participate in follow-up care once a woman has completed active management of her cancer. Although Shingleton l repotted that in the United States only 64.0% of cervical cancer patients are managed by subspecialists, Ontario gynaecologists clearly feel that treatment decisions for cervical cancer (as well as vulvar and vaginal cancers) should be made by a gynaecologic oncologist. A survey of 126 gynaecologists in Scotland revealed they agreed that vulvar cancer is a disease that should be treated by a gynaecologic oncologist. 2,3 Women with gynaecologic cancers in Ontario are generally referred by gynaecologists to gynaecologic oncologists rather than to radiation or medical oncologists, a pattern which was recently supported by the Society of Gynecologic Oncologists' Guidelines for Reflrml to a Gynecologic Oncologist. 4 Our survey, however, identified areas for improvement in the referral process. First, gynaecologists feel that the referral process to a regional cancer centre should be simplified, and they favour communication with a physician or physician-specific ass is-

JOGC.

tanto Second, gynaecologists feel they should promptly receive detailed clinical notes following all patient-physician interactions. Third, gynaecologists prefer direct communication with gynaecologic oncologists and suggested that mechanisms to facilitate interaction at a mutually convenient time be designed. Most gynaecologists are willing to provide follow-up care to patients who have received definitive treatment. There are several issues concerning follow-up that require further investigation: Does early detection of a recurrent cancer enhance survival or quality of life? Following initial management by gynaecologic oncologists, is it appropriate for follow-up care to be delivered in the community setting? Is there a system to capture the results of follow-up care for ongoing quality assurance of cancer care delivery? What mechanisms can be implemented to improve communication between gynaecologists and gynaecologic oncologists for the purpose of clinical decision-making and professional development? Gynaecologists requested clear guidelines on issues of follow-up care. While the medical literature suggests that evidencebased guidelines lead to more uniform care, there are no Ontario guidelines describing follow-up care for women with gynaecologic cancers. 5 Given the aging population demographic and the fact that older people develop cancer, combined with the limited number of gynaecologic oncologists in Ontario and the interest of gynaecologists in delivering follow-up care, the development of decision-making resources has tremendous potential for positively meeting everyone's goals. CONCLUSIONS

Currently, many women with gynaecologic cancers in Ontario are seen by gynaecologic oncologists or multidisciplinary teams affiliated with 6 regional cancer centres. Although the gynaecologists appear satisfied with the current system, respondents identified areas for improvement. Responding gynaecologists suggested the need for follow-up guidelines and continuing education opportunities to promote high-quality care in the community setting. A standard referral process would enable patients to be seen as soon as possible by a gynaecologic oncologist in a centre as close to their homes as possible, and a common chart could facilitate seamless care across the diagnostic, treatment, and follow-up spectrum. Moving to such a shared-care model would require a quality assurance mechanism to monitor outcomes such as recurrence, survival, and health-related quality oflife, and to monitor process and organizational issues such as timeliness of care as was recent1y done in the u.K. 2 Although few gynaecologists in regions lacking gynaecologic oncology services responded to the survey, the findings suggest that women in these regions with gynaecologic cancers are routinely referred to distant centres, warranting further investigation of the actual numbers of women involved and the potential impact on their medical care and life circumstances. JULY 2002

Further understanding of these system characteristics would contribute to the development of policy on the delivery of gynaecologic cancer care, and contribute to a model of shared oncologic care that could be used for other disease sites. REFERENCES I.

2.

3.

4.

5.

Shingleton HM,Jones WB, Russell A, Fremgen A. Chmiel JS, Ocwieja K, et al. Hysterectomy in invasive cervical cancer: a national patterns of care study of the American College of Surgeons. J Am Coli Surg 1996; 183(4):393-400. D'Arcy TJ, Roy A,Thomas A. Mcindoe A, Soutter WP. Standards for the management of cervical and vulval carcinoma. Br J Obstet Gynaecol 2000; I07:846--8. Penney GC, Kitchener HC,TempletonA.The management of carcinoma of the vulva: current opinion and current practice among consultant gynaecologists in Scotland. Health Bull I995;53( I):47-54. Society of Gynecologic Oncologists. Guidelines for referral to a gynecologic oncologist: rationale and benefits. Gynecol Oncol 2000;78:S I-S 13. Grol R.lmproving the quality of medical care: building bridges among professional pride, payer profit, and patient satisfaction. JAm Med Assoc 200 I ;286(20):2578-85.

Hormone Replacement Therapy and Cardiovascular Disease In

Iud· a n

H rm nd "I hi m und r

110

(I

n_

tlilltelltlllU of rli/icmioll Progrtlm of Ph) icinn nlld of tb Ro til oIl Itr of tlllIltW.

Don't miss this valuable self· dir cted learning module on hormone replacement therapy and cardiovascular disease. Supponed by an u

JOGC

III

u don Je

Ja, \l ) J 1'1 J n J R I ~~ ( I In 1 /'\(

JULY 2002

c from