Achieving compliance through support groups.
By Peter J. DeCesare, MPA, RPSGT, BS, RRT
Whether a patient is using bilevel therapy or CPAP (continuous positive airway pressure) therapy, compliance is the key to a happier and healthier patient. Various strategies have been employed in attempts to raise compliance rates, including the use of sleep apnea support groups. Traditionally, support groups have taken place in the form of regularly held meetings where members discuss compliance, equipment, research findings, and personal struggles with CPAP. With the advent of the Internet, access to a “virtual” sleep apnea support group is practically immediately available. With compliance a well-defined problem, the question for many labs is not whether to establish a support group, but which approach to take for the lab’s set of sleep disorder patients.
TRADITIONAL SUPPORT GROUPS
Traditional support groups at their core serve as a system of peer support and offer a coping mechanism for patients and their family members who are impacted by the disorder. One such network of groups, A.W.A.K.E. (an acronym for Alert, Well, And Keeping Energetic), was established in 1988 and is a part of the American Sleep Apnea Association. The network includes hundreds of support groups throughout the country. Forming a support group such as A.W.A.K.E. first involves answering key questions to ensure such a group will aid in patient compliance.
IS A SUPPORT GROUP NEEDED IN YOUR COMMUNITY?
Support group meeting topics
Before moving forward with the establishment of a support network, there must be evidence of an unmet need in the community. “There isn’t much data needed to start a support group. The most important thing to know would be whether there are multiple groups in one community. You don’t want competing groups in one community because then no one benefits,” says Edward Grandi, executive director of the American Sleep Apnea Association (ASAA).
If there is a need and you want to speed up the process of gaining members, you may want to consider partnering with a home medical equipment (HME) provider. Collaboration with your local HME companies presents an excellent opportunity for communication and dialogue with the potential provider of the patient’s equipment. Providers can also be a resource for demonstrating sleep equipment and offering information about the variety of interface alternatives and devices available to meet the patient’s lifestyle.
“To determine whether a support group is needed in your community, look at the number of calls that you’re getting,” says Grandi. “Callbacks from patients on questions and concerns are markers that will tell you if you need a group. If, within a particular sleep lab, the number of callbacks starts to get pretty high, it might make sense to set up a group.”
HOW MUCH TIME AND MONEY WILL IT TAKE TO FORM A SUPPORT GROUP?
Putting an exact dollar figure on the cost of getting the group started is difficult because of the variety of directions you can take. Mailing lists, advertising, and marketing efforts can all vary in size, but all in all, starting the group shouldn’t cost more than $1,000. Getting things started is the big expense; after that, maintaining the group will cost significantly less.
“The commitment would be larger in the early stages and less in the later stages of forming the group,” says Grandi. “Later, financial costs would be more related to mailing costs, etc.”
One person dedicating a week of their time over the course of a month would be able to accomplish everything that is needed to be done to start a group, Grandi estimates.
WHO WILL LEAD THE GROUP?
The support group can take a “mutual help” approach, or a sleep lab or other health care professional can lead them. In the mutual help approach, members drive the meeting and keep the group active and functional. Patient involvement in sharing the workload is a strategy that can yield positive results. Members who participate share in the ownership of responsibility.
DEFINING YOUR AUDIENCE AND REACHING THEM
Before starting a support group, it should be very clear who your target audience is. Your group can focus strictly on sleep apnea or expand to include other disorders. The more commonalities shared among the group will lead to more focused discussions and prevent members from feeling ostracized.
“If the group is more of a lecture or equipment fair, and you have a large enough space, the more participants, the merrier,” says Grandi. “If the format allows for individuals to talk and share about their experiences, beyond 30 people will make it tough for people to participate. I also think the larger the number of people, the more reluctant participants are to talk.”
Once your audience is defined, a plan of action to reach them should be formed. Potential members can be reached through your lab or through collaboration with a group of surrounding labs. Health fairs can also serve as a base for reaching members. You may also want to work with physicians who specialize in diabetes or obesity treatment. Take advantage of your referral base in order to publicize the group and increase membership.
To find people for your group, Grandi suggests that each sleep lab send out information to its own list of patients. “If each sleep lab and HME company keeps their own list of patients, they can work together to organize a place to meet. Additionally, depending on your community, you can place a listing in the newspaper, or a local radio station might be willing to put out a public service announcement.”
INTERNET SUPPORT GROUPS
An alternative to traditional support groups, online support groups offer the benefit of immediate interaction and anonymity. The same anonymity and immediacy can also serve as a disadvantage. Though users can participate in posting in an online support group at any time, there is no guarantee that anyone will respond to their inquiry in a timely manner or respond at all.
Internet support groups
AOL Sleep Apnea Message Board
When considering starting an online support group, time and financial commitments need to be considered just as they are for a traditional support group. “The financial commitment for an online support group is really just about the cost of renting space on a server,” says Grandi. “If you are clever about it, you can do that for almost nothing. The software that a lot of the online groups use can be downloaded for free. And then it is just a question of time.”
Before seeking to establish your own online support group, make sure you are aware of those that already exist. It might be best to refer your patients to the forum of your choice. You and your staff can also become regular participants in that forum, offering support to not only your patients, but others as well.
For an active, moderated group, there is an ongoing time commitment to manage it—answering people’s questions and also dealing with participants who need to be dealt with. If the online group is moderated, it is going to demand more time. “There are online groups that are not moderated, and they are kind of a free-for-all,” says Grandi. “We get criticized for our site (apneasupport.org) because we try to protect our participants from people who try to get on it to sell snake oil and other things like that. We are very careful because we want the forum to be consistent with the philosophy of the association.”
How you formulate and structure your group will also depend not only on the philosophy of your lab but also on the needs of the patient population. Whether pursuing a traditional support group, a partnership, an online network, or a combination of these, support groups offer an avenue to better cater to the needs of your patients and help them achieve better compliance.
Peter J. DeCesare, MPA, RPSGT, BS, RRT, is the administrative director of the Institute of Sleep Medicine and Respiratory Care South Departments of Staten Island University Hospital, Staten Island, NY. He holds a Masters of Public Administration (concentration in Healthcare Administration), as well as a bachelor of science degree in biology and health care sciences, from Long Island University in Brooklyn, NY.