CHIS Women s Health Work Group Meeting Summary May 13, 2014, 9:30-11:00 am

Transcription

1 CHIS Women s Health Work Group Meeting Summary May 13, 2014, 9:30-11:00 am Elaine Zahnd, PhD, Workgroup Coordinator Participants: Nancy Breen, PhD, National Cancer Institute, Applied Research Program Richard Chang, MPH, UCSF Bixby Ctr for Reproductive Health Research & Policy, DHCS, Office of Family Planning, Title V Joan Chow, MPH, DrPH, CDPH STD Control Branch, Epidemiology Unit Marina Jose Chabot, M.Sc., UCSF Bixby Ctr for Rep. Hlth. Research & Policy, DHCS, Maternal, Child & Adolescent Health Rita Singhal, MD, MPH, County of LA Public Health, Office of Women s Health Jane Kil, MPH, UCLA CHPR, CHIS staff Elaine Zahnd, PhD, PHI CHIS staff Unable to participate at this meeting: Monica Brown, PhD, MPH, CDHCS, Breast & Cervical Cancer Screening Lillian Gelberg, MD, UCLA School of Medicine, Family Medicine Krista Hanni, MS, PhD, Monterey County Health Department Patricia Lee, PhD, CDHCS, Office of Medical Director Heike Thiel de Bocanegra, PhD, MPH, UCSF Family PACT Evaluation, Bixby Center for Global Rep. Health Research & Policy Workgroup Objectives: To review CHIS 2001-CHIS 2013/2014 women s health measures in order to prioritize and rank content, and to identify possible funding for women s/adolescent female s health content Although we discussed funding strategies at the meeting prior to ranking the topics, it seemed more useful to the workgroup members to initially summarize the topic rankings and then to summarize the funding strategy below. In addition, if any of my notes do not match your recollections, please let me know. It is challenging to help chair, lead and take notes. Thanks. Topic Ranking: 1. Marina suggested we begin with ranking the overall 10 topics since there were so many questions under each topic to review, and all agreed. The members used the provided CHIS Topic Ranking documents which lists women s health topics and questions that have been fielded on CHIS since 2001 through to begin the process 2. The members then ranked the 10 women health topics through their discussion of each topic at this meeting, deciding to save the adolescent female topic ranking for the next meeting. 3. Nancy noted the importance of including SEXUAL ORIENTATION on CHIS as an important topic that was not on the women s health topic list but needs to be funded and on CHIS. Elaine pointed out that it is considered a demographic so that the cost is shared across all funders and it will be on CHIS NATIONAL CANCER INSTITUTE (NCI) FUNDING SUPPORT: Since NCI has supported so much of the women s health module in the past and all of the cancer control module, Nancy began the discussion by stating that NCI has a long and

2 rich history of supporting CHIS cancer-control measures over the past 10 years. However, with sequestration, NCI is no longer able to provide funding, at least in the foreseeable future. Nancy noted how important it was to field many of the topics supported by NCI over the past decade through identifying funding sources. 5. PAP SMEAR-CERVICAL CANCER = HIGH ranking: Most Pap smear testing questions were placed on CHIS to insure comparability with NHIS. Although the results have shown that testing levels have not changed a great deal over time, Nancy ranks this topic as HIGH, along with HPV testing, as important women s health services that need to be tracked on CHIS. It is a key preventive service and we need to know if under ACA women are being tested at higher rates. Joan concurred with recommending that cervical cancer screening be a HIGH priority and noted that early analyzes showed that there were racial/ethnic disparities with Asian women less likely to get screened. She noted that it is important to measure cervical cancer screening post ACA to see if the racial ethnic disparities are now decreasing, or have disappeared. The last time the series were fielded was in Rita also felt this topic should have HIGH priority and noted that it is important to add the HYSTERECTOMY question. The group concurred that the topic should be ranked HIGH. 6. HYSTERECTOMY = HIGH ranking: As noted above the group, felt we needed to include a question on hysterectomy in order to determine the denominator for Pap smear and unintended pregnancy (Note: Pap tests not recommended if woman had full non-cancer related hysterectomy; also important to ask about them for denominator of women at risk for unintended pregnancy.) 7. MAMMOGRAM / BREAST CANCER = MEDIUM ranking: Nancy noted that NCI funded 6 cycles on this topic. The CHIS results are released, now, and there is a rich source of data to be analyzed. Rates have been stable since 2003, although there may be an increase in utilization with ACA coverage. There is interest in focusing on mammography among Asian women, and CHIS can help with that analysis. When NCI found they had to pull funding from fielding mammogram questions, they reached out to Komen Foundation and the American Cancer Society and they provided the funding to ensure that the topic was included in CHIS. Nationally up until 2003, there was a rise in mammography, and then it seemed to have leveled off. Without further fielding in , we won t know if it did level off since There has been a lot of debate, especially last year, about appropriate age range for screening and also periodicity (how often should women be tested). As far as trends in CA, this is a MEDIUM priority, because we have not analyzed the data yet. However, the U.S. Preventive Task Force said screening is not highly rated for those women years; they then changed the recommendation after public outcry (and Congress had a hand in ensuring continuation), so we don t have the scientific results to determine this issue yet. We could recommend to see if mammogram utilization has declined among the year old group. There is still controversy about testing at this age range; is it appropriate? What about false positives? The discussion among the group concluded that we don t have enough information yet to recommend if mammograms should start at age 40. It may be that a number of Americans feel that they won t get a screening (mammogram) unless they have a disease. Rita noted that in a clinical setting, they often consider mammogram screening for women as a shared decision between the woman and her provider, and that it also depends on if she is at higher risk for other reason. Some doctors will not screen, and some will screen at age 50 and some doctors over screen. The family risk factors for breast cancer should be considered in screening for the younger cohort. Group consensus was that this is a MEDIUM priority. 8. HUMAN PAPILLOMA VIRUS (HPV) = HIGH ranking: In 2007, CHIS fielded a series of questions on the Adult and Adolescent survey about HPV testing, screening, knowledge/attitudes, cost, vaccination, and reason why not get the vaccination. In 2007, HPV testing was 25%; some thought 50%, but Joan thought 25% HPV vaccination. The data is rich for mining, although some good analyses have been done already, but given that it was only fully fielded in 2007, the group consensus was to rank it as a HIGH priority (screening and if all 3 doses, and why not get vaccinated, if haven t; knowledge is low priority). 9. GAIL MODEL=LOW ranking: As Nancy explained, the Gail Model was created by Mitch Gail, a NCI statistician, to assess risk of breast cancer using a series of questions. The model was fielded a few times on CHIS as a population tool, but recently has been used as an individual risk assessment tool. It is on the NCI website so that women can go online and go through the model questions themselves. One member noted that obesity also appears to be driving breast

3 cancer risk, especially affecting earlier menstrual cycles. Given that family risk factors are as strong an indicator as the Gail model, members of the workgroup voiced the opinion that this was LOW priority for CHIS PREGNANCY/INFERTILITY/GESTATIONAL DIABETES/BIRTH CONTROL = HIGH ranking for birth control and for pregnancy (in relation to birth control and unintended pregnancy); LOW ranking for infertility and for gestational diabetes: The discussion on this topic was linked to the discussion on contraception/birth control. Richard noted that the Family PACT group had submitted a series of contraception methods questions (and unintended pregnancy questions) to Patricia Lee, which included the question on whether they were currently pregnant. Marina also said this was important to her current work and cited a 2010 IOM report about the importance of measuring unintended pregnancy rates. Women ages years as well as adolescent females are the target groups because they are driving the need for and type of services needed for unintended pregnancy. The members noted their disappointment that CHIS did not included any sexual behavior questions of adolescents. Marina volunteered to write up a short concept piece on the importance of the issue to encourage funders to support including the topic of birth control on CHIS Nancy asked how you measure unintended pregnancy. Marina and Richard explained that they ask if the respondents were sexually active in the past year, measure if they are able to become pregnant (so not currently pregnant), and if they are currently using birth control (last time had sexual intercourse). The group mentioned that PRAMS national survey also measures birth control and unintended pregnancy, but it is only a survey of those who have given birth to a live child instead they are interested in the at-risk universe for unintended pregnancy. The Family Survey of Family Growth and the CA Women s Health Survey (latter non-existent now) did have questions about unintended/intended pregnancy. Regarding pregnancy per se, Elaine noted that CHIS has a small number of pregnant women in the sample each cycle, and that no one has to her knowledge focused an analysis on the health of pregnant women using CHIS and that there are better data sources available for that type of analysis. The question arose as to whether CHIS is the best way to collect data on pregnant women, and on unintended pregnancy, but Marina and Richard answered that they are interested in at risk of unintended pregnancy which is not among the pregnant population, the rate of unintended pregnancies. Rita and Richard also noted there are geographic hot spots in CA where there are disparities in terms of using contraception, and that is what they need to focus on to determine where programs most need to increase services. Family PACT has found hot spots in LA County for birth control use, even drilling down to the SPA level. Rita also supported the need to rank contraception/unintended pregnancy as a HIGH priority given the need to also identify at-risk groups/areas. 11. ABORTION/EMERGENCY CONTRACEPTION (EC)= LOW ranking: Since the workgroup discussed birth control at length when addressing the previous topic, they noted the importance of making birth control a HIGH priority, and then turned to these two topics. The group felt that abortion and emergency contraception were low priority given that they are not preventive; also they felt sample sizes would not be large. 12. SEXUAL HEALTH/HIV/STI/STD (both genders) = HIGH ranking for past year number of sexual partners; LOW ranking for STI/STD; MEDIUM ranking for HIV/AIDS: Joan explained that the number of sexual partners question is HIGH because it is used to determine who needs HIV/STI testing. There are a small number of respondents who have more than one partner in the general population. About 1 out of 5 HIV infected people are unaware of their HIV status. She ranked testing for HIV question and when they had their last HIV test as of MEDIUM ranking, and others agreed. Regarding STI testing, Joan said she was unsure about inclusion given the issue of reliability as well as stigma (people who tested negative more likely to report than those who tested positive.) The group discussed what the results are generalizable to versus if you are asking these questions in a clinical setting would it be generalizable to a community? If so, what is it generalizable to? Joan noted that how useful population survey data is for STD/STI measurement is hard to determine. We have good clinical data on the rates of STD/STI but not sure of the comparison. Overall, she thinks the STD/STI tested question for a general population may not be useful Joan thinks most don t know what they have been tested for. They might say yes when they have gotten a Pap smear test or have vaginitis or urinary tract infection testing/treatment. Asking if they were tested for HIV/AIDS is more useful. However, asking about the gender of sexual partners is HIGH importance as they use it for preventive purposes and for determining need for services. 13. HORMONE REPLACEMENT THERAPY (HRT): MEDIUM ranking: NCI funded the HRT questions on CHIS in the past and feel there have been some great California studies on HRT and whether uses declined after the findings and press

4 and public attention due to negative findings from the National RN long term study. HRT use dropped in the region following the press, but it has not been asked since 2009, and it is difficult to know if the rate has stabilized, is rising or declining at this point. Rita noted that some younger menopausal women now have started on HRT with some doctors who say it is fine to use it for hot flashes/menopausal symptoms for a short time period. So it would be helpful to measure it again to see change among various groups. It has been 5 years since it was fielded on CHIS and some doctors will not prescribe it at all, and some doctors are quite open to prescribing it. Given the discussion and lack of data since 2009, the group ranked this topic at MEDIUM priority. 14. BONE DENSITY = evaluate obtain more information to determine ranking. The group felt that since bone density was only asked in 2001 and never again, and that screening is covered by Medicare, it should be given further consideration. Nancy suggested bringing it back on since it is an important women s health issue and has only been asked once. Elaine will look at frequencies and see if other literature is of help. Funding Strategy: What should be the workgroup strategy for making recommendations and for funding possibilities? The following strategy was supported by Nancy, Joan, Marina, Rita, and Richard (consensus): 1. Link our recommended measures to the need for ACA/health care reform tracking of those health measures a. Focus on screening/testing b. Focus on access c. Focus on prevalence d. Focus on utilization of services 2. Dovetail our recommendations with recommended measures emerging from upcoming June 2 nd CHIS health care reform workgroup (Heike and Patricia are on both workgroups) 3. Women s reproductive and preventive testing and services should be monitored as more women are now insured and will have access to reproductive and preventative services due to ACA requirements a. ACA law requires certain preventive health services and screenings be covered in all new health insurance plans without cost sharing (co-pays); many of which focus on women s health: Breastfeeding support, supplies and counseling Screening and counseling for interpersonal and domestic violence Screening for gestational diabetes HPV testing HIV testing STI/HIV counseling Contraceptive methods and counseling Well woman visits Vaccinations, including flu, HPV, and hepatitis among others Mammograms every 1-2 years for women over 40 Cervical cancer screening every 3 years (pap) Smoking cessation programs Prenatal screening and tests Diabetes and blood pressure screening Depression screening (adults & adolescents) 4. We need women s health measures back on CHIS because it is the main source of population-based, women s health data in CA now that the CA Women s Health Survey no longer exists a. BRFSS covers only adults (not adolescent female health) and provides data at state level only; BRFSS provides data for fewer racial/ethnic groups than CHIS b. CHIS did not have a women s health module in and fielded limited measures on ; CHIS provides county level data; Need CHIS women s health data for program evaluation, research and policy

5 c. Some workgroup members submitted suggested CHIS women s health measures (birth control / contraceptive methods) that they believe are key for tracking to Patricia Lee, DHCS for the department s consideration already (Richard) 5. Rita noted that MediCAL expansion is a major piece of ACA but safety net services or acute care services are still needed for groups left out of ACA, and that needs to be measured; also undocumented are left out 6. Joan emphasized need for CHIS women s health data for program evaluation purposes NEXT STEPS: 1. A NUMBER OF WORKGROUP MEMBERS WHO WANTED TO ATTEND COULD NOT AND ASKED TO BE ABLE TO PARTICIPATE IN FOLLOW-UP MEETING (FINAL). 2. THE WORKGROUP MEMBERS DID NOT HAVE TIME TO DISCUSS OVERALL TOPICS ABOUT ADOLESCENT FEMALE HEALTH MEASURES NOR TO RANK THEM. PLEASE RANK THE TOPICS BEFORE THE FINAL MEETING. 3. THE WORKGROUP AGREED TO JOIN FOR ONE MORE WORKGROUP MEETING/CALL TO FINALIZE THEIR RANKING AND RECOMMENDATIONS. 4. ELAINE WILL SEND OUT A DOODLE FOR SETTING POTENTIAL DATE FOR FINAL MEETING. 5. MEANWHILE THESE NOTES WILL BE POSTED ALONG WITH THE RANKING SHEET ON THE CHIS WORKGROUP WEBSITE. 6. PLEASE GO BACK ONLY TO THE TOPICS RANKED HIGH FROM TODAY S MEETING ON THE WOMEN S HEALTH TOPIC RANKINGS, AND RANK THE QUESTIONS UNDERNEATH THE HIGH TOPICS.