Online patient communities and patient forums, like our own knee replacement forum, have proven to be useful sources of much needed support and information for patients, and the benefits of such online communities are becoming well documented.
Also See: “Knee Arthroplasty: Shared Experience in a Virtual Community” (a PhD dissertation featuring BoneSmart®)
Communities both for patients planning and recovering from knee replacement surgery have experienced dramatic growth since their creation in 2003. Pre-operative knee replacement patients create a social network in the online forums where members can discuss their concerns about upcoming surgeries and ask specific questions from moderators and experienced e-patients. Post-operative knee replacement patients discuss their concerns about rehab and physical therapy, for example.
Tom Ferguson and Dan Hoch’s article, “What I’ve learned from E-Patients,” breaks down the benefits of e-patient forums into three useful categories: source of support, source of information, and source of collective knowledge and experience. In terms of support, the authors write, “The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor’s office.”
Pre-Op Knee Replacement Patients
Pre-operative knee replacement patients can benefit enormously from the support they receive in online forums and professionally moderated chat rooms. Jo Fox, orthopaedic nurse of over 50 years and lead administrator of the BoneSmart® Forum, says that encouragement and reassurance from the peer group increases confidence and provides a sense of stability. She and other administrators and moderators, most of whom have either undergone or performed knee replacement surgeries themselves, act as specialized sources of support and information. A note posted at the top of the forums tells patients not to be discouraged by the “number of problems that seem to be represented” by user posts.
The goal of these forums is to foster communication between persons who may need knee replacement surgery and those who have had one or more of their own joints replaced. Experienced users are encouraged to help “mentor” new patients, and provide a nurturing environment of support and knowledge.
Online forums are also useful as sources of information. Pre-operative knee replacement patients ask specific questions like, “Is it better for me to wait before getting a surgery?” and “How active will I be after the surgery?” Patients receive advice on choosing a surgeon, and are properly informed about the basics of surgical procedures, rehab and recovery. To someone who is just beginning to investigate knee replacement surgery, the various approaches and procedures can be overwhelming. This is where the moderator’s specialized knowledge and the community’s general knowledge assist the pre-operative patient.
Post-op Knee Replacement Patients
Ms. Fox says that post-op knee replacement patients often express worries about accidents, complications, and failures. The support they are given in the forums allows them to cope with the emotional side of undergoing surgery. Emotional issues can range from depression to poor pain control to difficulty with the activities of daily life such as bathing, dressing, and mobility.
Obtaining specific answers to questions like, “Why am I not sleeping at night?” and “Shouldn’t I be further on at X weeks?” provides patients with an immediate sense of comfort and ease. In addition, e-patients are properly informed about rehab, recovery, and infection hazards. The moderators, who have special training in these areas, help to pass along reliable and practical information.
“At 8 weeks, her OS said that she could start driving. Now she’s at 16 weeks and hasn’t tried at all. I wonder if I should push it or just let her decide when the time is right? What has your experience been with post-op patients in similar circumstances? I suspect it will help overall, but she’s still using a cane and sometimes the walker. She’s 60 and in otherwise perfect health.” (by ilovedogs)
Post-operative knee replacement patients learn how to use medical home-equipment like ice machines and CPM’s (Controlled Passive Movement). Furthermore, physical therapy can be confusing to patients who are just beginning the stages of rehabilitation. Moderators and experienced members of the forum offer suggestions on how to navigate this crucial period. Members who have gone through physical therapy for a total knee replacement are often more than willing to share their experience.
Ferguson says, “About 10% of the members’ posts spontaneously mentioned that they had been unable to get the medical information that they needed from their own clinicians. When we surveyed members directly, more than 30% said that they had been unable to obtain all the medical information they would have liked from their physicians.” From these findings, the authors reason that online patient forums are serving a real need for medical information.
But collective knowledge and experience in patient communities serve as perhaps the greatest benefit. Fox writes that worries about longevity of implants and incidence of complications and failures are assuaged in the knee replacement forums. When one patient expresses concern about weight gain after a surgery, another patient responds: “I too gained a lot of weight because of my knee. Most of us have been experiencing a change in what we eat.”
While online communities are by no means replacements for doctors or their medical expertise, by sharing their experiences patients can provide the types of assistance to each other than physician might not be able to. Tom Ferguson notes, “I have also learned that an online group . . . is not only much smarter than any single patient, but is also smarter, or at least more comprehensive, than many physicians—even many medical specialists.”
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