Promoting Access to Health Services (PATHS) Brief: Walsh, Suzuki, Campbell et al
Promoting Access to Health Services (PATHS)
Emily Walsh, MPH, Rie Suzuki, PhD, Gloria Krahn, PhD, Jan Campbell, BS*, Elizabeth McNeff, MPA: HA*, Jana Peterson, MPH, PhD, Amanda Weatherby, PhD
The authors would like to thank June Isaacson Kailes, MSW and David Buckley, MD for their contributions to this project.
Primary health care screening is the first step in treatment for some diseases to reduce their impact on a person’s health and prevent an early death. The U.S. Preventive Services Task Force has made evidence-based recommendations concerning when people should receive clinical preventive services (CPS) as part of their primary health care. Studies show, however, that people with disabilities are less likely to get some CPSs at the recommended times than are people without disabilities. There are many reasons for this disparity in services, such as health care delivery systems that do not track or coordinate care; knowledge and awareness of people with disabilities, clinicians and staff; inaccessible clinics and medical equipment; insurance coverage and co-payment requirements; and factors specific to each to patient. There are several efforts to increase use of CPSs by persons with disabilities, but few studies exploring the effectiveness of these efforts have been done.
“Promoting Access to Health Services” (PATHS) was designed to address the disparity in receipt of CPSs by working with individuals with disabilities. PATHS is an intervention program that uses “patient activation training”. This type of intervention uses training to promote control by the participants to improve clinical care. In order to facilitate ongoing supportive monitoring and problem-solving, monthly calls are made from the trainers to the participants.
The purpose of this study is to evaluate the efficacy of a patient-level intervention program—PATHS—to educate and support women with physical disabilities to become current with their CPSs. The specific primary health care and screening services that PATHS focuses on are:
- Papanicolaou (Pap) test for cervical cancer;
- mammography for breast cancer; and
- weight management
The study is testing for an increase in the rate of women getting these services due to the PATHS intervention program. In addition, we will evaluate the efficacy of the intervention in achieving change in the immediate targets, as described in more detail below. We will also monitor use of the clinical preventive services for colorectal cancer screening, cholesterol screening and hypertension screening to assess for “carry-over” effects.
PATHS is based on the workbook Making Preventive Health Care Work for You and on health promotion theories of intervention. The workbook was developed by a self-advocate, June Isaacson Kailes, MSW. The theories include self-efficacy, the health belief model, and the Transtheoretical Model of Change. The training program was developed in part through collaborative work with Ms. Kailes.
PATHS was developed to increase regular use of clinical preventive health care services and improve skills to access primary health care among women with physical disabilities. Development of the PATHS program employed a participatory research process throughout. The participatory research process was used to: outline workshop content, develop the presentation, create training procedures, develop an on-going support protocol, and evaluate effectiveness. Pilot-testing of the program identified the need for information on insurance coverage for services and transportation. Information on these topics was included in training materials.
Study subjects are recruited by the following four methods:
- Medicaid Insurance. Staff from CareOregon, the primary Medicaid insurance carrier in the Portland Metropolitan Area, developed a mailing list of potentially eligible members based on age, gender, Medicaid disability code and geographic location. CareOregon then sent a recruitment letter and follow-up postcard to those members. The letter invited them to participate in the study by contacting our research staff.
- County Health Department. Multnomah County is the county in which most of Portland’s population resides. The Multnomah County Health Department staff agreed to recruit potential participants for PATHS from five of their clinic sites. The clinic managers have allowed research staff to post recruitment flyers at their clinics. Where there is space available, the clinics also provide space for PATHS workshops.
- Disability Organizations. The RRTC research staff has worked with a number of disability organizations to recruit participants through flyers, distributing notices via email listservs, newsletters, and mailing recruitment letters.
- Durable Medical Equipment Suppliers (DMEs). Research staff is collaborating with a DMES in the Portland area to recruit through their customer database. The DMES staff identify potentially eligible participants based on age, gender, geographic location and type of equipment purchased. DMES staff send recruitment letters and follow-up notices to potential PATHS participants inviting consumers to participate in the study.
Potential participants are directed to visit a web-based screener or call the RRTC and be screened by phone for eligibility and assignment. All females aged 35-64 who self-report having a physical disability, having health insurance, living in the Portland area, and not being current in one of the three preventive services are eligible. Once determined eligible, they are randomly assigned to either the PATHS intervention or control condition.
Figure 1. Study Process
Figure 1 shows a schematic for the process by which a participant joins the study and the following experiences they may have. If a participant is eligible and wants to participate in the study, she is able to complete the baseline survey either by mail or phone. Participants are then randomly and blindly assigned to either a workshop or control group. If assigned to the workshop group, participants are contacted by the RRTC staff and scheduled to participate in a PATHS workshop at a time and place convenient for them. Workshops are held in Multnomah County clinics, disability organizations, and community centers with available space. Workshops are held on different dates at each place, with a workshop taking place approximately every 4 to 6 weeks. Each workshop lasts about 2 hours and has no more than 10 participants in attendance. Workshops are led by experienced trainers who are also women with physical disabilities. There is also at least one other support staff person in attendance at workshops to assist with data collection and any other issues.
Workshops follow a standard format composed of four modules. The first module in the workshop concerns three common conditions (listed above) that adult women should be screened for. This module includes information and activities regarding some risk factors associated with each condition and the screening tests commonly used to detect those conditions. The second module is about the common barriers to getting preventive screenings experienced by people with disabilities and some strategies to overcoming those barriers. The third module includes time for the participants in each workshop to discuss the barriers they have experienced and the strategies they have employed to overcome barriers. While a number of different strategies are discussed in the second module, the focus of the third module is on one particular strategy. The strategy emphasized in this module is effective communication with one’s physician. Participants are given the opportunity to try a script for communicating with their doctors, or can observe the workshop trainers modeling the script. The fourth module is called “Getting Started: Steps to Regular Screening”. In this module, participants make individual goals to ensure that they achieve and maintain a current schedule to obtain their clinical preventive services.
Follow-up phone contact by a workshop trainer begins within one week after the workshop and continues every month for six months afterwards. Follow-up calls are used to support participants and collect data about progress toward achieving their goals and any barriers they have encountered. Workshops participants also get regular incentive mailings from the RRTC that includes cards and small gifts valued at less than $1 each. These mailings are sent in order to maintain regular contact with all participants.
Control Condition Procedures
Participants assigned to the control group participate in baseline and follow-up data collection. They receive general health and wellness materials by mail at the following times: 1 month after mailed baseline survey data collection, and in months 3 and 5 of the study. Control group participants also receive regular incentive mailings from the RRTC, identical to those of the intervention participants.
Participant data are collected at the time of eligibility screening, baseline, immediately post-workshop (workshop only), and at 6 months after baseline. The measures distributed to both control and workshop group participants are designed to gather data about knowledge regarding clinical preventive services; perceived risk for diseases detected by clinical preventive services; behavioral mediators, such as self-efficacy for obtaining clinical preventive services; outcome expectations that screening behaviors will positively impact health; and use of clinical preventive services. Efficacy of the PATHS intervention will be measured by differences between workshop and control participants by an increase in the number of women with physical disabilities who report being current in clinical preventive services.
All participants are provided with gift cards in appreciation of their efforts with data completion. Control participants may receive up to $50 in gift cards for completing the study while workshop participants, who provide an extra round of data, may receive up $70 in gift cards for completing the study.
A total of 80 workshop and 80 control condition participants are anticipated. Participants to date (April, 2008) have largely been recruited through CareOregon. CareOregon identified a total of 2,737 potentially eligible participants and sent them an initial recruitment letter and follow-up postcard. Of that group, a total of 334 people contacted us (12%). Of those, we screened 287 people for eligibility (the remainder were not reached at the telephone numbers given). Of these, most were current with the preventive services discussed in this intervention, yielding a total of 75 eligible participants. These were randomly assigned either to the PATHS workgroup or to control group. A total of 22 people have participated in 5 PATHS workshops, 1 scheduled workshop is pending, and 38 people are enrolled in the control group. Data from the measures have not been examined yet because of the small number of participants to date. Much more will be known within the next 6 months.
At the end of each workshop, we ask the participants to fill out a brief evaluation of the workshop itself. Feedback from the workshops has been uniformly positive. Of 21 completed workshop evaluations, 65% of participants in the workshops rated a score of 5 (or “Very much”) for both “Overall I liked the workshop” and “the PATHS workshop was helpful in providing information about preventive health services.” They also indicated that the PATHS workshop was easy to understand. A number of participants have asked for additional workshops or contacts, and some have taken the initiative to exchange contact information with other participants. This has prompted plans for a final celebration of goals achieved at the end of the study period.
Phone call follow-up with participants who have attended a workshop commenced shortly after the first workshop took place. Data gathered in these calls has not yet been examined because of the small number of participants and because phone call follow-up is not complete for any of the participants. However, the trainers have reported some initial successes from the phone contact. Specifically, it appears that many participants are making progress on the goals set at the workshop. For example, even though weight loss strategies were not a focus of the workshop, many participants have reported that they are working on losing weight after learning that overweight and obesity are risk factors for some diseases. Trainers have also reported that the continued support of the calls is appreciated by the participants and that participants show increased confidence in themselves and a better understanding of the importance of clinical preventive services.
There are several observations of interest regarding recruitment. The first is that many of the women who contacted us are already current with the three clinical preventive services included in this intervention (mammography, Pap smear, weight check). Secondly, mammography is the least commonly obtained clinical preventive service among women who contacted us. The Behavioral Risk Factor Surveillance System 2006, on the other hand, indicates that mammography is the most commonly obtained clinical preventive service among women with a disability.
The third observation is that many of the participants screened into the study do not have obvious physical limitations (e.g., do not use wheelchairs or canes). All responded affirmatively to at least one of the following three screening questions: In your usual state of health, are you limited in any way in any activities because of a physical problem OTHER THAN with seeing or hearing?; Have your activities been limited because of this physical problem FOR 6 MONTHS OR LONGER?; Do you now have any physical problem that requires you to use SPECIAL EQUIPMENT FOR MOBILITY, such as a cane, a wheelchair, or a walker? Apart from limitations related to obesity, however, their limitations are less visually obvious to external observers.
Another observation is that women who are enrolling in PATHS have multiple disabilities. Many participants are arriving at the workshops with a range of needs and personal concerns. Most common are mental health concerns, domestic violence and abuse histories, and concerns relating to depression and isolation. In part because of these issues, preventive screening is often a low priority for the participants in the workshops. Therefore, the workshops have indicated a need for access to other local resources, advocacy, and support systems.
Finally, while the researchers need to wait another six months or so to measure the overall effectiveness of the program, we have heard that participants are scheduling their preventive services, some as a function of completing the baseline survey. We have also heard that these women are eager to participate with other women to improve their health. While weight loss has not been a goal of the PATHS program, a number of workshop participants report having increased their physical activity and feeling positive about the weight loss they are experiencing. Their general self-efficacy to improve their health appears to be increasing.
Because this study is only mid-way through completion, it is too early to report any final implications. Nevertheless, some emerging implications of the study can be categorized four ways. Among people with disabilities, an implication of the study is that many do not know the scope of their insurance coverage. More accessible information and resources supporting a better understanding of one’s insurance coverage could be a boon to the accessibility of clinical preventive screenings. Another is that the social support engendered by the workshop and the follow-up calls is viewed very positively by the participants. As indicated in the section above, many participants have a need for more and different resources than we had anticipated. Finally, this intervention may support different kinds of interventions for different people. For some, the workshop works well, though for others it may be that the cue perceived in the baseline tool is enough to motivate a person to obtain clinical preventive services. The preliminary implication of PATHS for practice is that clinical preventive services are needed for women with disabilities.
Implications for policy include issues of cost coverage. Many women in the workshops report not being able to afford clinical preventive services even with insurance or having difficulty navigating what their insurance plans do and do not cover. Likewise, transportation costs are a barrier to regular screening. There is a lack of understanding about the importance of—and options for—clinical preventive screenings, suggesting a need for more education. Finally, accessibility (both physical and attitudinal) in medical facilities can be a barrier to achieving regular clinical preventive screenings.
Finally, implications for future and current research indicate that it is important to understand that people attending a workshop like PATHS may have a range of issues (such as mental health, abuse, income, etc.) which should be anticipated by future researchers. Also, many of the participants at the workshops have not had visible physical disabilities, suggesting that there is a wide range of possible understanding of the eligibility screener questions.