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Published June 2005 by the South Australian Department of Health Population Research and Outcome Studies PO Box 287, Rundle Mall, Adelaide, 5000 South Australia, Australia
Chittleborough, Catherine. The Gestational Diabetes Mellitus (GDM) : recall register pilot project evaluation report. ISBN 0 7308 9405 3. 1. Diabetes - South Australia. 2. Diabetes in women South Australia. 3. Diabetes in pregnancy - South Australia. I. Caudle, Lynda. II. Taylor, Anne. III. South Australia. Dept. of Health. IV. Title. 362.196462
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Table of Contents
EXECUTIVE SUMMARY .............................................................................. 7 CHAPTER 1: BACKGROUND AND RATIONALE........................................ 11
1.1 1.2 1.3 1.4 Definition of gestational diabetes mellitus (GDM) ....................................12 Diagnosis of GDM.....................................................................................12 Prevalence of GDM...................................................................................12 Post-GDM risk of diabetes ........................................................................13
1.4.1 Guidelines for screening and management of GDM ............................... 13 1.4.2 Rates of development of diabetes and the population attributable risk of GDM ................................................................................................. 14 1.4.3 Ethnic differences in the rates of development of diabetes...................... 15 1.4.4 Significance of GDM in preventing or delaying diabetes ......................... 15
1.5
1.6
References ................................................................................................18
CHAPTER 3: METHODOLOGY.................................................................. 23
3.1 3.2 3.3 3.4 3.5 Recruitment to the GDM Recall Register Pilot Project.............................24 Maintenance of the GDM Recall Register Pilot Project............................24 Recall function of the GDM Recall Register Pilot Project ........................25 Information to general practitioners ..........................................................25 Data sources for evaluation of the GDM Recall Register Pilot Project ....26
3.5.1 Consent forms and Register update forms............................................. 26 3.5.2 Pregnancy Outcome Unit Data ............................................................. 26 3.5.3 Telephone questionnaire survey ........................................................... 26 3.5.4 Feedback from diabetes centre staff ..................................................... 28
3.6
Types of evaluation...................................................................................29
3.6.1 Recruitment evaluation ........................................................................ 29 3.6.2 Retention evaluation ............................................................................ 29 3.6.3 Return of Register update forms evaluation........................................... 29 3.6.4 Blood glucose test evaluation ............................................................... 30 3.6.5 Registrant evaluation ........................................................................... 30 3.6.6 Site evaluation..................................................................................... 30
Appendix 1: Information sheets................................................................... 47 Appendix 2: Consent forms......................................................................... 51 Appendix 3: Wallet card.............................................................................. 57 Appendix 4: Reminder letter and Register update form................................ 59 Appendix 5: General Practitioner letter........................................................ 63 Appendix 6: Approach letter for telephone survey........................................ 65 Appendix 7: Telephone survey questionnaire .............................................. 67
Acknowledgements The Diabetes Clearing House, Department of Health would like to thank staff at The Queen Elizabeth Hospital and Health Service, Diabetes Centre and The Ashford Hospital Diabetes Centre, ACHA for their valued and ongoing involvement in the GDM Recall Register.
EXECUTIVE SUMMARY
Executive Summary
Introduction
The Gestational Diabetes Mellitus (GDM) Recall Register was established as a pilot project in July 2002 in response to the lack of a systematic, centralised long term follow up of women who have had GDM. The GDM Recall Register Pilot Project was a collaboration between the Diabetes Clearing House, Department of Health and the diabetes centres at the Adelaide Community Healthcare Alliance (ACHA) Ashford Hospital and The Queen Elizabeth Hospital and Health Service (TQEH).
Aims
The purpose of the GDM Recall Register is to follow up women who have had GDM over the long term to regularly remind them that they should have their diabetes status checked because they are at increased risk of developing type 2 diabetes. The aim of the pilot project was to determine if establishment of the GDM Recall Register was feasible, particularly in terms of recruiting women to the Register, retaining women on the Register over time, and encouraging women on the Register to have a blood glucose test to check their diabetes status.
Methods
Women were recruited to the GDM Recall Register at their appointment with the diabetes nurse educator at the diabetes centre. Registrants were sent a letter approximately 15 months after their expected delivery date to remind them to have their diabetes status checked. Included with this reminder was a form to return to the Register with any change of details and to inform the Register of the results of any blood glucose test that they had in the past year. In addition to recruitment data, returned Register update forms, and information supplied by the Pregnancy Outcome Unit, Department of Health, a telephone survey was conducted among women who had been sent a reminder letter as at 30 June 2004.
Results
As at 30 June 2004, 107 women were enrolled on the Register. External validation analysis using Pregnancy Outcome Unit data indicate that this represented 76.9% of all women diagnosed with GDM at the two hospital sites.
Executive Summary
Evaluation of Register Update forms (n=53 as at 30 June 2004), and results of the telephone survey indicated that approximately half of the registrants were actively responding to the GDM Recall Register by returning their Register update form (49.1%) and/or having a long term follow up blood glucose test (47.2%). No registrants had reported being told by a doctor that they had developed diabetes.
Future recommendations
It is recommended that the GDM Recall Register continue beyond the pilot project phase for women already recruited, and also be expanded to include other sites within South Australia. The GDM Recall Register has the potential to recruit a high proportion of women with GDM, and encourage a large number of women with GDM to actively respond to the Register by having their diabetes status checked over the long term. Applying the recruitment rate of the pilot project at TQEH and Ashford to the total number of women with GDM in South Australia during the period 1 July 2002 to 31 December 2003 (n=912), means that approximately 700 women would have been recruited to the Register during this period. Of these, approximately 330 women would have had a long term follow up blood glucose test. Expanding the Register to recruit women from more sites in South Australia will result in a large number of women having their diabetes status checked over the long term. This, in turn, has the potential for diabetes to be detected early among these women, and related costly complications to be prevented or delayed. To further improve the recruitment and retention rates and broaden the functions of the GDM Recall Register, it is recommended that: The Register information sheets are revised and re-formatted to be more reader-friendly, for example spreading the text over a double-sided page, so that the font size can be enlarged; The Register consent forms, information sheets, and reminder letters be translated into other languages, Vietnamese in the first instance, to enable women of non-English speaking backgrounds to participate in the Register; Consideration is given to collecting additional information, such as parity and previous history of GDM, on the consent form, and; Consideration is given to expansion of the health promotion function of the Register to provide information to women on how to reduce their risk of developing diabetes.
11
Background
12
Background
In South Australia, the prevalence of GDM amongst women who gave birth between 1 July 2002 and 31 December 2003, was 3.5% (95% CI 3.3 3.7) (Pregnancy Outcome Unit, South Australian Department of Health). This prevalence of GDM, however, statistically significantly increased with age (2 trend = 166.98, p<0.001). Women of Asian (7.7%, 95% CI 6.3 9.3) and Aboriginal (4.9%, 95% CI 3.4 6.7) origin also had statistically significantly higher prevalence of GDM than women of Caucasian background (3.2%, 95% CI 3.0 3.4) (Pregnancy Outcome Unit, South Australian Department of Health).
13
Background
1.4.2 Rates of development of diabetes and the population attributable risk of GDM
Many studies of diabetes risk in women with prior GDM indicate an increased risk of impaired glucose tolerance and diabetes at mid term and long term follow up, compared to women with no history of GDM [5-15]. A systematic review of studies published from 1965 to 2001 found that although the conversion rates of women with prior GDM to type 2 diabetes ranged widely between studies from 2.6% over 6 weeks to 70% over 28 years [16], this variation was largely accounted for by differences in length of follow up from 6 to 28 weeks and the retention of participants, and to a lesser extent, by differences in diagnostic criteria and non-randomised population selection [16-18]. Most women with prior GDM who develop diabetes have type 2 diabetes, although type 1 is also possible [10, 19, 20]. In a recent Danish study involving long term follow up of women with previous diettreated GDM, a doubling in the incidence of diabetes and impaired glucose tolerance/impaired fasting glucose over a 10-year period from 1990 was reported. This increasing incidence was associated with substantial increases in BMI in women with GDM [21]. Other factors that appear to enhance the risk of type 2 diabetes postGDM include early gestational age at diagnosis, elevated fasting glucose level, need for insulin therapy, and history of GDM, as well as obesity and other factors that promote insulin resistance [4, 17].
14
Background
15
Background
The prevention and delay of diabetes, irrespective of the substantial individual, societal and health care benefits, may also have profound economic benefits as demonstrated in a US study conducted in 1993, in which a 50% reduction of type 2 diabetes amongst women who had had previous GDM over a 10 year period was estimated to save US$331 million [29].
16
Background
monitoring of women with GDM is also a recommendation of The Strategic Plan for Diabetes in South Australia [37]. The Australian Diabetes in Pregnancy Society (ADIPS) Gestational Diabetes Management Guidelines recommend that women with GDM be followed up with an oral glucose tolerance test at 6-8 weeks post-partum, then at least every two years, because of the increased risk of developing permanent diabetes [3]. Similarly, the American Diabetes Association recommends that reclassification of maternal glycaemic status be performed at least six weeks after delivery and if normal, reassessment of glycaemia should be undertaken at a minimum of three year intervals [4]. In South Australia, women with GDM are currently followed up at 3-months postpartum to ensure GDM has resolved, and some diabetes centres do a longer 1-year follow up, but there is no systematic longer term follow up of women with GDM in place.
1.5.1 Knowledge and compliance of medical practitioners and women with prior GDM with GDM follow up guidelines
Knowledge and compliance of medical practitioners with clinical practice guidelines for postpartum glucose testing following GDM, and knowledge of the risk of diabetes (type 1 and type 2) and recurrent GDM may be highly variable and dependent on individual practitioner factors. In a recent study of medical residents in the United States, only 5.2% recognised the risk of diabetes associated with GDM, and although 53.1% were aware that some form of post-partum glucose testing was recommended, only 32.9% reported having provided continuity of care or longer term follow-up [38]. Although no comparable studies have been done in Australia, results of the American study are likely to be similar, and serves to highlight the need for systematic, long term follow up of women with prior GDM independently of follow up provided by medical professionals.
17
Background
1.6 References
1. 2. 3. Wilson, J.D., Gestational diabetes: universal or selective screening? Medical Journal of Australia, 2001. 174: p. 113-4. Metzger, B. and D. Coustan. Proceedings of the Fourth International WorkshopConference on Gestational Diabetes Mellitus. 1998: Diabetes Care. Hoffman, L., et al., Gestational diabetes mellitus: management guidelines: the Australasian Diabetes in Pregnancy Society. Medical Journal of Australia, 1998. 168: p. 93-7. American Diabetes Association, Gestational Diabetes Mellitus. Diabetes Care, 2004. 27(Suppl.1): p. S88-90. King, H., Epidemiology of glucose intolerance and gestational diabetes in women of childbearing age. Diabetes Care, 1998. 21(Suppl.2): p. B9-B13. Mestman, J., Follow-up studies in women with gestational diabetes mellitus: the experience at Los Angeles Country/University of Southern California Medical Center., in Gestational Diabetes, D. Coustan, Editor. 1988, Springer-Verlag: Vienna. p. 191-98. Damm, P., et al., Predictive factors for the development of diabetes in women with previous gestational diabetes mellitus. American Journal of Obstetrics and Gynaecology, 1992. 167: p. 607-16. Henry, O. and N. Beischer, Long-term implications of gestational diabetes for the mother. Baillieres Clinical Obstetric Gynaecology, 1991. 5: p. 461-83. Coustan, D., et al., Gestational diabetes: predictors of subsequent disordered glucose metabolism. American Journal of Obstetrics and Gynaecology, 1993. 168: p. 113945. Fuchtenbusch, M., et al., Prediction of type 1 diabetes postpartum in patients with gestational diabetes mellitus by combined islet cell autoantibody screening: a prospective multicenter study. Diabetes, 1997. 46: p. 1459-67. Herranz, L., et al., Follow-up of women with gestational diabetes: incidence and factors associated with later development of abnormal glucose tolerance. Diabetologia, 1998. 41(Suppl.1): p. A125. Albareda, M., et al., Diabetes and abnormal glucose tolerance in women with previous gestational diabetes. Diabetes Care, 2003. 26(4): p. 1199-1205. Damm, P., et al., A longitudinal study of plasma insulin and glucagon in women with previous gestational diabetes. Diabetes Care, 1995. 18(5): p. 654-65. Metzger, B., et al., Prepregnancy weight and antepartum insulin secretion predict glucose tolerance five years after gestational diabetes mellitus. Diabetes Care, 1993. 16: p. 1598-1605. O'Sullivan, J., The Boston Gestational Diabetes Studies: review and perspectives., in Carbohydrate metabolism in pregnancy and the newborn., D. Pearson, Editor. 1989, Springer-Verlag: London. p. 287-94. Kim, C., K. Newton, and R. Knopp, Gestational diabetes and the incidence of type 2 diabetes: a systematic review. Diabetes Care, 2002. 25(10): p. 1862-8. Pasui, K. and K.F. McFarland, Management of diabetes in pregnancy. American Family Physician, 1997. 55(8): p. 2731-8.
4. 5. 6.
7.
8. 9.
10.
11.
15.
16. 17.
18
Background
18. 19.
O'Sullivan, J.B., Diabetes mellitus after GDM. Diabetes, 1991. 40(Supplement 2): p. 131-5. Beischer, N., et al., Prevalence of antibodies to glutamic acid decarboxylase in women who have had gestational diabetes. American Journal of Obstetrics and Gynaecology, 1995. 173: p. 1563-69. Petersen, J., et al., GAD65 autoantibodies in women with gestational or insulin dependent diabetes mellitus diagnosed during pregnancy. Diabetologia, 1996. 39: p. 1329-33. Lauenborg, J., et al., Increasing incidence of diabetes after gestational diabetes: A long-term follow-up in a Danish population. Diabetes Care, 2004. 27(5): p. 1194-9. Simmons, D., C. Conroy, and C. Thompson. Diabetes in pregnancy in South Auckland. in Australasian Diabetes in Pregnancy Society Annual Scientific Meeting. 1995. Melbourne: ADIPS. Kjos, S., R. Peters, and A. Xiang, Predicting future diabetes in Latino women with gestational diabetes: utility of early postpartum glucose tolerance testing. Diabetes, 1995. 13: p. 527-29. Ali, Z. and S. Alexis, Occurence of diabetes mellitus after gestational diabetes mellitus in Trinidad. Diabetes Care, 1990. 13: p. 527-9. Coustan, D., Gestational Diabetes. Diabetes Care, 1993. 16(Suppl.3): p. 8-15. Cheung, N. and K. Byth, Population health significance of gestational diabetes. Diabetes Care, 2003. 26(7): p. 2005-9. Diabetes Prevention Program Research Group, Reduction in the incidence of type 2 diabetes with lifestyle intervention or Metformin. The New England Journal Of Medicine, 2002. 346(6): p. 393-403. Tuomilehto, J., et al., Prevention Of Type 2 Diabetes Mellitus By Changes In Lifestyle Among Subjects With Impaired Glucose Tolerance. The New England Journal Of Medicine, 2001. 344(18): p. 1343-1350. Gregory, K., S. Kjos, and R. Peters, Cost of non-insulin-dependent diabetes in a woman with a history of gestational diabetes: implications for prevention. Obstetric Gynaecology, 1993. 81: p. 782-6. Mathers, C., T. Vos, and C. Stevenson, The Burden of Disease and Injury in Australia. 1999, Australian Institute of Health and Welfare: Canberra. Colagiuri, S., et al., DiabCo$t Australia: Assessing the burden of Type 2 Diabetes in Australia. 2003, Diabetes Australia: Canberra. O'Sullivan, J., Gestational diabetes. Unsuspected, asymptomatic diabetes in pregnancy. New England Journal of Medicine, 1961. 264: p. 1082-5. Holt, T.A., Long term follow-up of women who have had gestational diabetes. British Journal of General Practice, 1992. 42(362): p. 254-5. Parsons, J., D. Wilson, and A. Scardigno, The Impact of Diabetes in South Australia. The Evidence. 2000, On behalf of the South Australian Diabetes Health Priority Area Advisory Group, South Australian Department of Human Services: Adelaide. Beischer, N.A., P. Wein, and M.T. Sheedy, A follow-up program for women with previous gestational diabetes mellitus. Medical Journal of Australia, 1997. 166: p. 353-7. Commonwealth Department of Health and Aged Care, National Diabetes Strategy 2000-2004. 1999, CDHAC.
20.
21. 22.
23.
28.
29.
35.
36.
19
Background
37.
Department of Human Services, The Strategic Plan for Diabetes in South Australia. 1999, Department of Human Services, in partnership with the Diabetes Health Priority Area Advisory Group: Adelaide. Weaver, S., Letter to the editor: Gestational diabetes indicates risk later in life. Family Medicine, 2004. 36(3): p. 159-160.
38.
20
CHAPTER 2: AIMS
21
Aims
22
CHAPTER 3: METHODOLOGY
23
Methodology
24
Methodology
forms were secured in a locked cabinet to which only authorised study personnel had access.
25
Methodology
3.5 Data sources for evaluation of the GDM Recall Register Pilot Project
All registrants who had been sent a reminder letter between 1 July 2002 and 30 June 2004 were eligible to participate in the telephone survey. An approach letter was sent to all eligible registrants prior to conducting the survey in September 2004 (Appendix 6). The questionnaire was pilot tested with seven registrants. The final questionnaire is listed in Appendix 7. The telephone survey was conducted by a privately contracted and accredited survey company under supervision of the Diabetes Clearing House study personnel. Trained professional interviewers telephoned the households, identified themselves, and requested to speak with the study participant. The purpose of the survey was not revealed to anyone other than the registrant, in order to maintain privacy and confidentiality. Appointments were made to call back at a more convenient time, or at a time when they were more likely to be available.
26
Methodology
Telephone interviews were undertaken between 9.30am and 8.00pm. At least six callbacks were made, at different times of day or evening, before a non-contact was recorded. Any refusals to participate were recorded. Participants responses were recorded onto a paper-version of the questionnaire at the time of interviewing. Completed questionnaires were only identifiable by the unique GDM Recall Register identification number assigned to each registrant at the time of enrolling onto the Register. On completion of the survey, questionnaires were sent to the Diabetes Clearing House and raw data was entered onto an Access database using an electronic data entry form and imported into SPSS for Windows (Version 12.0) for analysis.
3.5.3.2
Response rate
Of the 107 women on the Register at the end of the pilot phase on 30 June 2004, 53 registrants had been sent a reminder letter and Register Update form at 30 June 2004, and were eligible to participate in the telephone survey. At the completion of the survey 47 registrants had been interviewed, resulting in a response rate of 88.7%. Of the six eligible registrants who were unable to be interviewed, two had disconnected phone numbers, one had moved address with no forwarding address, one was absent overseas, and two were unavailable for interview after six call-back attempts.
3.5.3.3
Demographic profile
The demographic profile of registrants who participated in the telephone survey (n=47) is shown in Table 3.1.
27
Methodology
28
Methodology
29
Methodology
30
CHAPTER 4: RESULTS
31
Results
Table 4.2 shows the proportion of women with GDM who were recruited to the Register from the total number of women diagnosed with gestational diabetes mellitus at each hospital from 1 July 2002 to 31 December 2003. Overall recruitment to the Register for this period was 76.9%. Table 4.2: Recruitment of the GDM Recall Register 1 July 2002 to 31 December 2003
Ashford Wome n diagnosed with GDM
a
TQEH 24 15 62.5
93 75 80.6
Wome n with GDM recruited to the Register Register Recruitment Rate (%)
a
32
Results
33
Results
Table 4.3: Proportion of Register update forms returned and blood glucose tests performed among women who had been sent a reminder letter as at 30 June 2004
Recruited Reminder letter sent Register update form returned Had long term follow up blood glucose test* Been told by a doctor have diabetes
* Data from Register update form and telephone survey
In the telephone survey, women who had had a blood glucose test (n=24) were asked what prompted them to have the test. Table 4.4 shows 62.5% of women who had had a blood glucose test were prompted by the reminder letter, either alone or in combination with another prompt. Table 4.4: Proportion of blood glucose prompts amongst women who had had a blood glucose test in the telephone survey
Blood glucose test prompt Reminder letter alone Reminder letter and other prompt Other prompt alone Overall n 12 3 9 24 % 50.0 12.5 37.5 100.0
Prompts other than the reminder letter that were reported by women who had had a blood glucose test included: Endocrinologist recommended it soon after the baby was born. Obstetrician recommended a test at six weeks. Because I was pregnant and my obstetrician recommended the test. Pregnant and had the test just before received the reminder letter. Second pregnancy. Subsequent pregnancy. Family doctor said I need a follow up test. Family doctor aware of gestational diabetes. Going to the doctor anyway. General practitioner wanted me to. Thought I was developing symptoms so wanted to have the test. Wanted to have test done earlier as I was feeling unwell. Worried about symptoms (thirsty), so had already had a test earlier.
34
Results
Women in the telephone survey who had not had a blood glucose test (n=23) were asked to indicate their reasons for not having a test. Responses are listed in Table 4.5. Table 4.5: Reasons for not having a blood glucose test amongst telephone survey participants who had not had a blood glucose test
What are the reasons why you havent had a blood glucose test?* Havent had time Dont think I need a test Intend to have the test, but havent done so yet Forgot about having the test done Other
* Multiple responses possible
n 12 6 3 2 8
Other reported reasons for not having a blood glucose test included: Child unwell. Didnt know where to go or if referral was required. Have been testing myself and results were normal. Have used a monitor to check levels and they have been normal, so didnt think I needed the test. Just had a blood test and glucose normal, so doctor said I didnt need a test. Need babysitter for child, because test takes two hours. Pregnant again and just waiting to see how things go. Test in hospital was normal, so didnt think another test was necessary.
Women who had not had a blood glucose test (n=23), were also asked what factors, apart from the reminder letter, that would make them more likely to have a blood glucose test (Table 4.6). Table 4.6: Factors other than the reminder letter that would make women more likely to have a blood glucose test, amongst women in the telephone survey who had not had a blood glucose test
Other than the reminder letter, is there anything else that would make you more likely to have a blood glucose test?* No Yes If I had more time Yes - Other Dont know
* Multiple responses possible
n 15 3 4 1
35
Results
Other factors that would make these women more likely to have a test included: If they send me a referral through the mail to the pathologist to save me a trip to the GP. Ill health or weight gain. More information about where to go for the test. A phone call.
Of those who had had a blood glucose test (n=24), no respondents had been told by a doctor that they had diabetes.
36
Results
37
Results
38
Results
that a dot-point information sheet may be less time consuming, easier to assimilate, and more acceptable to the women. TQEH Diabetes Centre staff specifically requested translation into Vietnamese in order to increase the recruitment of these women to the Register, especially as these women represent a high risk group and constitute a reasonably high proportion of women with GDM at TQEH. Italian and Greek translation may also be required by TQEH Diabetes Centre. According to Pregnancy Outcome Unit data, both hospitals recruited women with GDM who were of Asian origin. The difference in GDM prevalence between Caucasian (4.1%, 95% CI 3.34 5.04) and Asian (10.3%, 95% CI 4.30 20.28) women at the Ashford hospital did not reach statistical significance, however TQEH showed a statistically significant difference (2 = 8.80, p<0.01) in GDM prevalence between Caucasian (1.8%, 95% CI 1.01 2.98) and Asian women (5.6%, 95% CI 2.99 9.54). The proportion of Asian women with GDM attending each hospital also differed significantly (2 = 7.40, p<0.01) from 1 July 2002 to 31 December 2003 with TQEH having a higher proportion (1.1%, 95% CI 0.58 1.91) than the Ashford hospital (0.3%, 95% CI 0.11 0.57). A higher GDM prevalence in Asian women overall, and a higher proportion of Asian women with GDM at TQEH, is a potentially significant factor that may reduce recruitment of women to the GDM Recall Register who are unable to understand English. Apart from these suggested changes, there were no other improvements to the Register that were thought to be necessary. In general, both sites were happy with the acceptability of the Register to the women, the level of communication with Diabetes Clearing House staff, and the Register protocol and administration.
39
Results
4.5.5 Broadening the aims of the Register to include health education and promotion
When asked about their views on broadening the aims of the Register to include health education and promotion, both sites thought this would be a good idea. However, concern was also raised that the original consent, given by the women at the time of going on the Register, may not cover extensive health promotion interventions or activities. Specific ideas for health promotion and education suggested by the diabetes educators were fridge magnets or information flyers about the symptoms of high blood glucose, epidemiological information about gestational diabetes and the risk of developing diabetes, and reminders about healthy weight, diet and physical activity levels. Suggestion was also made to send out information about upcoming Diabetes SA diabetes prevention seminars, with the proviso that a tick box be included on the consent form, allowing registrants to choose to have this information sent to them or not.
40
41
Conclusions
42
Conclusions
43
Conclusions
5.2.5 Expansion of the health promotion function of the GDM Recall Register
There is potential for the health promotion role of the GDM Recall Register to be increased. Currently, women are informed of their increased risk of developing diabetes during their appointment at the diabetes centre and through the information they receive from the Register. The information they receive on how to go about reducing their risk of developing diabetes and related complications, for example through improvements in diet, reductions in weight and increased physical activity, remain minimal. Such information could also include advertisements for educational and health-promoting events and activities organised through the diabetes centres. In future, the Register may also be used to disseminate new research, policy and program developments in relation to gestational diabetes mellitus, diabetes and its complications, and preventative lifestyle factors to women on the Register. Expansion of this function of the Register will need to consider the ethical implications of providing further information to existing registrants who did not originally consent to receiving such information, and also the increased costs associated with providing more information to registrants.
44
Conclusions
45
47
PILOT PROJECT
48
PILOT PROJECT
49
51
PILOT PROJECT - A joint collaboration between: Diabetes Clearing House [SA Department of Health]
CONSENT FORM
I, , consent to my involvement in the Gestational Diabetes Mellitus Recall Register Pilot Project. I have been provided with and read the information sheet, and I understand the reasons for this project. The ways in which it will affect me have been explained by the Diabetes Nurse Educator. My questions have been answered to my satisfaction. My consent is given voluntarily. The details of the project have been explained to me, including the reminder letter and how often it will be sent, depending on the previous result; and the expected time the project will take. I understand that the purpose of this research project is to improve the quality of medical care, but my involvement may not be of benefit to me. I have been given the opportunity to have a member of family or a friend present while the project was explained to me. No information about my medical history will be taken from the hospital. My identity will be kept confidential, and nothing will be published which could possibly reveal my identity. My involvement in the project will not affect my relationship with my medical advisers. I understand I am free to withdraw from the project at any stage without having to give any reasons, and that if I do withdraw from the project, it will not affect my treatment at this hospital in the future. I am 18 years of age or over. I consent to my general practitioner being informed of my participation in this study. I also consent to Recall Register staff contacting the person I have named as a secondary contact, if they are experiencing difficulties getting in touch with me.
Date: Date:
/ /
/ /
(if applicable, for example if an interpreter is used) I declare that I have been present when the research was explained to the above participant and I believe that the participant has an appreciation and understanding of the explanation given and that the consent was freely given: Signature of Witness: Address of Witness: Date: / /
YOUR DETAILS - please print Title: Family Name: First & Second Names: Maiden Name: Address: Ms / Mrs / Miss
Telephone Number:
Home: Mobile:
Work:
Email:
Home: Work:
Date of Birth: Expected Delivery Date: GENERAL PRACTITIONER Please complete this section so we can let your doctor know that you are taking part in the GDM Recall Register GPs Name: Address:
SECONDARY CONTACT Please provide details of someone who does not live with you, but will always know where you are if we are having difficulty contacting you. Title: Family Name: First Name: Address: Mr / Ms / Mrs / Miss
Telephone Number:
Home: Mobile:
Work:
Email:
Home: Work:
Relationship to you:
Father / Mother / Brother / Sister / Grandfather / Grandmother / Uncle / Aunt / Cousin / Friend / Other (specify) ____________
53
PILOT PROJECT - A joint collaboration between: Diabetes Clearing House [SA Department of Health]
CONSENT FORM
I, , consent to my involvement in the Gestational Diabetes Mellitus Recall Register Pilot Project. I have been provided with and read the information sheet, and I understand the reasons for this project. The ways in which it will affect me have been explained by the Diabetes Nurse Educator. My questions have been answered to my satisfaction. My consent is given voluntarily. The details of the project have been explained to me, including the reminder letter and how often it will be sent, depending on the previous result; and the expected time the project will take. I understand that the purpose of this research project is to improve the quality of medical care, but my involvement may not be of benefit to me. I have been given the opportunity to have a member of family or a friend present while the project was explained to me. No information about my medical history will be taken from the hospital. My identity will be kept confidential, and nothing will be published which could possibly reveal my identity. My involvement in the project will not affect my relationship with my medical advisers. I understand I am free to withdraw from the project at any stage without having to give any reasons, and that if I do withdraw from the project, it will not affect my treatment at this hospital in the future. I am 18 years of age or over. I consent to my general practitioner being informed of my participation in this study. I also consent to Recall Register staff contacting the person I have named as a secondary contact, if they are experiencing difficulties getting in touch with me.
Date: Date:
/ /
/ /
(if applicable, for example if an interpreter is used) I declare that I have been present when the research was explained to the above participant and I believe that the participant has an appreciation and understanding of the explanation given and that the consent was freely given: Signature of Witness: Address of Witness: Date: / /
YOUR DETAILS - please print Title: Family Name: First & Second Names: Maiden Name: Address: Ms / Mrs / Miss
Telephone Number:
Home: Mobile:
Work:
Email:
Home: Work:
Date of Birth: Expected Delivery Date: GENERAL PRACTITIONER Please complete this section so we can let your doctor know that you are taking part in the GDM Recall Register GPs Name: Address:
SECONDARY CONTACT Please provide details of someone who does not live with you, but will always know where you are if we are having difficulty contacting you. Title: Family Name: First Name: Address: Mr / Ms / Mrs / Miss
Telephone Number:
Home: Mobile:
Work:
Email:
Home: Work:
Relationship to you:
Father / Mother / Brother / Sister / Grandfather / Grandmother / Uncle / Aunt / Cousin / Friend / Other (specify) ____________
55
57
NORMAL next test due in 3 years INCREASED RISK next test due in 1 year
2003 2008
2004 2009
2005 2010
ENQUIRIES
2006 2011
2007 2012
Diabetes Clearing House, SA Department of Human Services Lynda.Caudle@health.sa.gov.au Level 8/CitiCentre Bldg, PO Box 287/Rundle Mall, Adelaide SA 8226 6505 8226 6244
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A joint collaboration between: Diabetes Clearing House SA Department of Health Diabetes Education Centre ACHA - Ashford Hospital Campus Diabetes Centre The Queen Elizabeth Hospital
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Thank you for registering on the Gestational Diabetes Mellitus (GDM) Recall Register. As over a year has passed since you were registered, we would like to take this opportunity to remind you to visit your general practitioner for a screening blood glucose test. Regular blood glucose tests are recommended for women who have had gestational diabetes, as they have an increased risk of developing type 2 diabetes in the future. Earlier detection of type 2 diabetes, through regular blood glucose testing, greatly contributes to better management of this condition, and in turn reduces the effects on the heart, kidneys, eyes and circulation. Please complete the enclosed form in order for us to keep your information on the Register up to date. Please check the personal information on this form and indicate any changes to your details, your general practitioner details or your secondary contact details, by crossing out the incorrect details and writing the new details within each section. Any personal information provided by you will remain private and confidential. Please return the completed form either by fax on (08) 8226 6244 or by using the printed Reply Paid envelope supplied. Your continued involvement in the Gestational Diabetes Mellitus Recall Register is important and provides vital information for the future development of strategic policy and planning in the effective management of diabetes and diabetes-related complications. If you have any questions about the study, please contact me by email at lynda.caudle@health.sa.gov.au, by phone (08) 8226 6505, or fax (08) 8226 6244. Thank you for your participation in this project. Yours sincerely
Lynda Caudle
Epidemiology Research Officer Gestational Diabetes Mellitus Recall Register Diabetes Clearing House
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A joint collaboration between: Diabetes Clearing House SA Department of Health Diabetes Education Centre ACHA - Ashford Hospital Campus Diabetes Centre The Queen Elizabeth Hospital
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(NB: This does not include when you were diagnosed with GDM)
Have you ever been told by a doctor that you have diabetes?
(NB: This is apart f rom being diagnosed with GDM) (NB: This is apart f rom being diagnosed with GDM)
If you have been told you have diabetes, what date were you told?
Please check your personal information below and indicate any changes by crossing out the incorrect details and writing in the new details.
YOUR DETAILS Title: Family Name: First & Second Names: Maiden Name: Address: Telephone Number: Email: Title Surname Othernames Maidenname Address Suburb SA Postcode Home: TelHome Mobile: TelMobile Home: EmailHome GENERAL PRACTITIONER GPs Name: Address: GPName GPAddress1 GPAddress2 SECONDARY CONTACT (Other than those you live with ) Title: Family Name: First Name: Address: Telephone Number: Email: Relationship to you:
GDM = Gestational Diabetes Mellitus
M_2ConTitle M_2consurname M_2conothername M_2ConAddress Home: M_2ConTelHome Mobile: M_2ConTelMobile Home: M_2ConEmailHome M_2ConRelationship Work: M_2ConEmailWork Work: M_2ConTelWork
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A joint collaboration between: Diabetes Clearing House SA Department of Health Diabetes Education Centre ACHA - Ashford Hospital Campus Diabetes Centre The Queen Elizabeth Hospital and Health Service
Dear Gpname
RE: THE GESTATIONAL DIABETES MELLITUS RECALL REGISTER PILOT PROJECT
We would like to inform you that Title Othernames Surname is a participant in the Gestational Diabetes Mellitus (GDM) Recall Register Pilot Project. Participants on this register are reminded that they should regularly attend their general practitioner for a screening blood glucose test for early detection of type 2 diabetes. The GDM Recall Register is a pilot project being conducted by the Diabetes Clearing House, Department of Health, in collaboration with the diabetes centres of the Adelaide Community Healthcare Alliance (ACHA) Inc (Ashford Hospital campus) and The Queen Elizabeth Hospital and Health Service to assess the feasibility of a centrally-based long term follow-up system of women who have had GDM and are at increased risk of developing type 2 diabetes. This GDM Recall Register is the first of its kind in the state, and has the potential to aid in improving the management and health outcomes of women who have previously been diagnosed with gestational diabetes. Further information regarding the GDM Recall Register Pilot Project is contained in the enclosed information brochure. If you have any further queries, please contact me either by email at catherine.chittleborough@health.sa.gov.au or by telephone (08) 8226 0788 or fax (08) 8226 catherine.chittleborough@health.sa.gov.au, 6244. Your support of the GDM Recall Register is greatly appreciated. Yours sincerely
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PILOT PROJECT A joint collaboration between: Diabetes Clearing House SA Department of Health Diabetes Education Centre ACHA - Ashford Hospital Campus Diabetes Centre The Queen Elizabeth Hospital
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Thank you for your participation in the Gestational Diabetes Mellitus (GDM) Recall Register. We are now evaluating the usefulness of the reminder letter used in this register and would appreciate your responses to a brief telephone survey. The reminder letter was sent to you just over a year after you enrolled on the register at the time of your appointment with the Diabetes Nurse Educator. This letter reminded you to visit your general practitioner for a blood glucose test to check for type 2 diabetes. One of our interviewers will be contacting you by telephone in the next few weeks to complete the survey which will take around 10 minutes. All information provided by you will remain private and confidential. Your continued involvement in the GDM Recall Register is important as it provides vital information for the future management of diabetes. If you have any questions about the telephone survey or the GDM Recall Register please contact me on phone (08) 82266505, email lynda.caudle@health.sa.gov.au or fax (08) 82266244. Thank you for your participation in this project. Yours sincerely
Lynda Caudle Epidemiological Research Officer Gestational Diabetes Mellitus Recall Register
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Gestational Diabetes Mellitus Recall Register Pilot Study Questionnaire - 2004 June
GE S TATIONA L DIAB ETES MEL L ITUS RE CAL L RE GISTE R P IL OT S TUDY QUE STIONNA IRE 2 00 4 - JUNE
A. INTRODUCTION
Good . My name is [Could I please speak to .....] Continue if correct person is on line. Or a) b) Repeat Introduction once the correct person is on line. If required person not available ask for a suitable time to call back. Record first name and make appointment. (End) If required person not at this phone number ask for any follow-up details. 1) Phone no. ...... 2) Address . . (End Send approach letter to new address) d) If required person incapable / deaf / ill / disabled. 1) Note reason .. (End) If required person needs an interpreter. 1) Note language required . (End) Im calling on behalf of the Gestational Diabetes Recall Register at the South Australian Department of Health. We are conducting a survey about this Recall Register that you were enrolled on at your appointment with a Diabetes Nurse Educator. I can assure you that all information given in this survey will remain confidential. The answers from all people interviewed will be gathered together and presented in a report. No individual answers will be passed on.
A.1 We recently sent you a letter about this telephone survey. Did you receive the letter? (Single response) 1. Yes 2. No 3. Dont know { { { } } }
c)
B.2 Have you had a blood glucose test (a test to check for diabetes)? (Single response) 1. Yes 2. No 3. Dont Know { { { } } Go to B.6 } Go to B.7
e)
B.3 What prompted you to have this blood glucose test? (Multiple response) 1. 2. The reminder letter Other (specify) { { } }
3.
Dont Know
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Gestational Diabetes Mellitus Recall Register Pilot Study Questionnaire - 2004 June B.4 When did you have this blood glucose test? (Record month and year) 1. Month 2. Year 4. Dont Know __ __ __ __ __ __ } } { B.7 Other than a reminder letter, is there anything else that would make you more likely to have a blood glucose test? (Multiple responses possible) 1. Yes if I had more time { } 2. Yes if my doctor told me I needed it { } 3. Yes if it didnt cost anything to have the test { } 4. Yes - Other (please specify) 5. No 6. Dont Know { { { } } }
B.5 What was the result of the blood glucose test? (Single response, prompt if necessary) 1. Normal / No Diabetes 2. Impaired Fasting Glucose 3. Impaired Glucose Tolerance 4. Diabetes 5. Dont Know Sequence guide: Go to B.8 B.6 What are the reasons why you havent had a blood glucose test? (Multiple response) 1. Havent had time 2. Dont think I need a test { { } } { { { { { } } } } }
B.8 Have you changed your contact details since you enrolled on the Register? 1. 2. Yes (record changes) No { { } }
3. Told by my doctor I did not need to have the test { } 4. Forgot about having the test done { 5. Cant afford it { } }
6. Intend to have the test, but havent done so yet { } 7. Dont have access to a general practitioner { 8. No reason 9. Other (specify) 10. Dont Know { { { } } } }
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Gestational Diabetes Mellitus Recall Register Pilot Study Questionnaire - 2004 June
C. DEMOGRAPHICS
I am now going to ask you some more general questions . C.1 How would you best describe your family structure? Please listen to the description and then tell me which one is the closest to your family situation. (Read options. Single response) 1. A family with a child or children living with both biological or adoptive parents { } 2. A step or blended family 3. A sole parent family 4. Shared care parenting 5. Adult living alone { { { { } } } } } } } } }
17. Philippines 18. Poland 19. Slovenia 20. Spain 21. UK and Ireland 22. USA 23. Vietnam
{ { { { { { {
} } } } } } }
24. Former Yugoslav Republic of Macedonia { } 25. Former Yugoslav Republics of Serbia & Montenegro { } 26. Other country (specify) 27. Refused 28. Fiji 29. India 30. South Africa { { { { { } } } } }
6. Adult living with partner and no children { 7. Related adults living together 9. Other (specify) 10. Refused { { { 8. Unrelated adults living together {
C.3 Are you of Aboriginal or Torres Strait Islander origin? (Single response) 1. 2. 3. 4. 5. No Aboriginal Torres Strait Islander Both Not stated { { { { { } } } } }
C.2 In which country were you born? (Single response) 1. Australia 2. Austria 3. Bosnia-Herzegovina 4. Canada 5. China 6. Croatia 7. France 8. Germany 9. Greece 10. Holland / Netherlands 11. Hong Kong 12. Iran 13. Italy 14. Japan 15. Malaysia 16. New Zealand { { { { { { { { { { { { { { { { } } } } } } } } } } } } } } } }
C.4 Do you speak a language, other than English, at home? (Multiple responses possible) 1. 2. 3. 4. 5. 6. Yes - Italian Yes - Greek Yes - Vietnamese Yes - Other (specify) No Not stated { { { { { { } } } } } }
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Gestational Diabetes Mellitus Recall Register Pilot Study Questionnaire - 2004 June
C.5 What is the highest level of education you have completed? (Single response. Prompt if necessary) 1. Never attended school 2. Some primary school 3. Completed primary school 4. Some high school 5. Completed high school { { { { { } } } } } } } }
C.7 Can you tell me the approximate annual gross income of your household? That is, for all people in the household before tax is taken out. Ill read out some categories and could you please tell me into which one your households income falls? (Read options. Single response) 1. Up to $12,000 2. $12,001 - $20,000 3. $20,001 - $40,000 4. $40,001 - $60,000 5. $60,001 - $80,000 6. $80,001 - $100,000 7. More than $100,000 8. Not stated / Refused 9. Dont know { { { { { { { { { } } } } } } } } }
6. TAFE or trade certificate or diploma { 7. University, CAE or some other tertiary institute degree { 8. Other (specify) {
C.6 What is your current marital status? (Read options. Single response) 1. 2. 3. 4. 5. 6. 7. Married { } } } } } } } Living with a partner (De Facto) { Divorced Separated Widowed Never Married Not stated { { { { {
C.8 Are there any comments that you would like to make about the Gestational Diabetes Mellitus Recall Register? (Encourage comments) 1. No comments 2. Comments (specify) { { } }
That concludes the survey. On behalf of the Diabetes Clearing House at the South Australian Department of Health, the Adelaide Community Health Alliance and The Queen Elizabeth Hospital, thank you very much for taking part in this survey.
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