Online patient communities and patient forums have sprouted up all across the web, focusing on diseases and conditions ranging from total knee surgery, to insomnia, to epilepsy and cancer. For the most part, these forums serve as a reliable source of medical information and the benefits of them are becoming clearer with time. One community in particular, patients recovering from knee replacement surgery, is showing dramatic growth and popularity. Post-operative knee replacement patients create a social network in the online forums where members can discuss their concerns about rehab and physical therapy and ask specific questions from moderators and experienced e-patients.
Josephine Fox, a moderator at the BoneSmart.org knee replacement forums and nurse of over fifty years, 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.
The goal of online communities for post-op knee replacement patients is to foster communication between persons who have recently undergone knee replacement surgery and those who have had one or more surgeries. Experienced users are encouraged to help "mentor" new patients, and provide a nurturing environment of support and knowledge.
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. One member of the forums asks about his mother, a patient: "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."
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.
Collective knowledge and experience in patient communities serve as the greatest benefit. Patients support each other by talking about their shared experiences. 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."
By sharing their experiences, patients can provide more assistance to each other than even a physician might be able to. Tom Ferguson, author of the article, “What I’ve learned from E-Patients,” writes: “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.”
BoneSmart.org is a National Public-Awareness Campaign for Candidates of Hip Replacement Surgery and Knee Replacement Surgery. The BoneSmart® National Consumer Awareness Campaign’s mission is to raise patient awareness of the options available to persons diagnosed as a hip replacement or knee replacement candidates by providing an Internet portal for awareness of the latest advances in joint replacement materials, their longevity and suitability for various applications. With this information the potential patient may be better informed when discussing options with his or her surgeon.
By Jeremy Reither
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