Objective: Because patients' perspectives on total knee replacement (TKR) surgery have rarely been the topic of research, this study sought to describe their pre- and postoperative experiences.

Conclusions: These findings suggest that patients need to be better educated and supported before and after TKR surgery. More research is needed to shed light on how patients' experiences influence their decisions about the surgery and its outcomes.

TABLE 1. PARTICIPANT CHARACTERISTICS (N = 27)

RESULTS

We identified four overarching themes in patients' experiences of TKR, which we named "putting up and putting off," "waiting and worrying," "letting go and letting in," and "hurting and hoping." Our purpose was to describe overall experience; we did not compare and contrast the data from the pre- and postoperative samples.

Putting up and putting off characterized the period before the decision to have surgery was made. It typically lasted for years and involved "putting up" with knee pain and resulting limitations and "putting off" TKR by modifying activities, using adaptive equipment, and undergoing less drastic treatments.

Putting up: pain limits what you can do. Participants described a gradual increase in knee pain, which they usually characterized as constant and aggravated by walking and other movements. Sometimes the joint gave out unexpectedly when they were walking or climbing stairs. They frequently described the knee as "bone on bone" with "no cartilage." Some reported that the knee was bending to the side or "bowing out."

One participant said, "Pain limits what you can do," a sentiment echoed by many. Another said,

I'm tired of it[horizontal ellipsis]. I am a very active person. My favorite comment is 'I can't.' I can't take the trash to the street. I can't cut the grass[horizontal ellipsis]. I am a car salesman. I feel like a flat tire, and in my business you can't have a flat tire.

Knee pain limited participants' ability to perform many daily activities, including dressing, cooking, cleaning their homes, shopping, using stairs, dancing, and playing golf. Many activities required careful planning, such as bringing crutches or a wheelchair, premedicating with analgesics, and planning routes.

If I went to the store, I had to know exactly what I could get and just hold onto the shopping cart[horizontal ellipsis]. [Eventually] I could only go to the stores that had [electric shopping carts]. I really couldn't even walk[horizontal ellipsis]. [The physician] even encouraged me to get handicapped parking, which I did.

Outings often resulted in fatigue and prolonged or exacerbated pain. Some participants described crying because of the pain and becoming depressed and isolated. As the condition worsened, participants began to limit their activities to those that required little walking or could be accomplished with frequent rest breaks or the use of mobility aids. Some relied on others for transportation; some obtained handicapped parking permits. One participant took her cell phone everywhere, even inside her own home, so that she could "call someone in case I get stuck." Others described modifying the way they approached tasks-for example, placing pillows under the knees when kneeling, sitting or lying down instead of kneeling, and crawling instead of walking.

For some, knee pain and functional limitations changed how they viewed themselves or how they believed others viewed them. They considered themselves active people who had been forced into inactivity. They saw their knee problems as constricting, and even controlling, their lives.

Putting off: getting to the point. Most participants delayed surgery for as long as possible, and for many, that was years after the option was first presented.

It was something I knew I had to do, but you just keep hoping that it will get better[horizontal ellipsis]. You get to the point where finally you figure, "I got to do something."

Some said that they'd put off surgery because they'd hoped that medical science would eventually offer a less drastic alternative or because they wanted to first try to strengthen their knees. Most participants said they wished they hadn't delayed surgery for as long as they had and would advise others not to wait so long. But that view was not universally shared. One postoperative participant "wanted to make sure that [horizontal ellipsis] there wasn't any doubt, that [surgery] was my only recourse."

During this period, participants often received treatments such as cortisone or hylan G-F 20 (Synvisc) injections. These gave transient relief to some; others said the treatments either weren't effective or worsened their condition. Participants referred to these treatments as "Band-Aids," "just temporary," or "a prelude to having [TKR] done."

Waiting and worrying. Once participants decided to proceed with TKR, they entered a period of waiting and worrying about what would happen during and after surgery.

Waiting: let's get it over with. As participants prepared for TKR, they became anxious to put the surgery behind them: "I put this off for years. I can't wait to get it over with." They described the waiting period as one filled with apprehension; one spoke of "anxiety that is cursing my life."

Many participants prepared by maintaining or increasing their activity level, believing that would aid recovery: "The better shape you are in, the better you get through surgery." Some worked to get "everything in as much order as [they] possibly can" to prepare for a postoperative period of limited functioning.

Worrying: 'something can go wrong.' Participants reported having concerns about anesthesia, surgery, and complications. Many viewed anesthesia as particularly risky. Participants were given the choice of a spinal or a general anesthetic. Most chose general, even if they felt it was riskier and would prolong recovery; they didn't want to be aware of any aspect of surgery.

I had general anesthesia, it was my choice[horizontal ellipsis]. [I'm] a nurse; I didn't want to wake up in the middle and hear things[horizontal ellipsis]. I've been scrubbed in for orthopedic surgeries so I kinda know the sounds and noises, and I didn't want to wake up and hear the jigsaw or anything.

Some expressed a generalized fear about surgery: "Any time you have surgery, anything can happen." Specific fears involved the risk of complications, such as a blood clot, infection, or death. Some had had complications with prior procedures or knew someone who had, which led to their current fear.

But some said they had no concerns. Many said they tried to maintain a positive attitude, believing a negative one would worsen their outcome.

I sure don't want to be negative going into it[horizontal ellipsis]. I mean, it's either go [in] up, or go in down and out. And if you go in down and out, there's [horizontal ellipsis] a worst-case scenario, that you will have complications.

One factor contributing to worry was having too little information about the operation: "I have no idea how long it will take[horizontal ellipsis]. Everything is ambiguous[horizontal ellipsis]. Please tell me what you are going to do." Most wished they'd received more information from their surgeons preoperatively and had better understood what to expect during recovery. One postoperative participant said that understanding the "backward-and-forward" nature of recovery beforehand would have made it "less scary and less traumatic than afterwards thinking, 'Why, what's wrong?'" (For more, see Questions Participants Had About Surgery, above.)

Some participants reported feeling well prepared for surgery and recovery. Those who'd received detailed and graphic information from their physicians appreciated it: "He was very explicit about what [horizontal ellipsis] the surgery would entail. [The surgeon] was great[horizontal ellipsis]. He let me hold the [replacement] joint in my hand."

Letting go and letting in. Pre- and postoperatively, participants struggled with the need for independence and with allowing others to help, comfort, and support them. "Letting in" also involved learning to accept the knee implant as part of their bodies.

Letting go: accepting a loss of control. Participants described themselves as independent people who found it difficult to rely on others: "I had to accept the loss of control." Many said they'd needed increasing assistance in performing activities of daily living preoperatively. Participants worried about being dependent on others, usually family members, while recovering.

When you're used to being the caregiver, that's hard, having somebody take care of you[horizontal ellipsis]. The first night I came home from the hospital [horizontal ellipsis] I went to the bathroom and I made a mess and I couldn't clean it up[horizontal ellipsis]. That night [my partner] was fine, he didn't mind cleaning up my mess or doing all that, but I asked him to just leave the room and just let the music play and shut out the lights. I put the pillow over my head and I cried.

Sometimes, participants resisted relinquishing control and exercised their independence, ignoring the advice of clinicians or family members. One participant planned to sip ginger ale after surgery during the period when fluids weren't allowed, believing that it would relieve postoperative nausea. Some planned to get out of bed on their own right after surgery: "I can't be tied down." One planned to bring his pajamas to the hospital, saying he couldn't sleep in anything else. A participant with diabetes planned to adhere to his usual diet after surgery, rather than the one prescribed.

Religion helped some participants; one spoke of God: "He will take care of this." Others articulated a philosophical acceptance: "Life is a road and you have to go down it, and this is something that I have to do."

We observed that letting go was accompanied by letting in-receiving encouragement from others, establishing trust with clinicians, and accepting the new knee.

Letting in: accepting encouragement. Many participants knew others who'd undergone TKR and found their accounts of successful outcomes encouraging: "It is wonderful [horizontal ellipsis] just thinking that I am going to come out the same way." Some of these acquaintances had spoken about wishing they'd had the procedure years earlier and being happy with the results; they told our participants that after TKR they'd "feel brand-new." But reports of negative outcomes (such as continuing pain or poor knee function) left participants feeling frustrated or fearful, and many said they tried to avoid hearing such stories: "I don't want any negativity around me right now. I want the positive stuff."

Several participants said that having more opportunities to talk with people who'd had the surgery or with providers would have increased their confidence going into surgery.

Don't let me just read it in a book or in a pamphlet or whatever. That's all well and good, but I want to talk to somebody. I want to bounce things off of them. I want to put myself more at ease. I want to get rid of that stress.

They would also have appreciated a structured peer-support group: "[It helps] knowing that other people have the same discomforts that I have[horizontal ellipsis]. You know, misery loves company and I'm sure we can compare notes."

Letting in: trusting the team. Participants spoke favorably of physicians who took the time to explain the surgery and answer questions. They valued a direct approach: "He's the nuts-and-bolts type of doctor that I like"; "He's not into fooling around. He tells you what's happening." They related having "100% confidence" in their physicians and their recommendations. Many chose a surgeon based on the recommendations of friends and family; some had solicited opinions about surgeons from others who'd had TKR.

Participants also noted the caring and skills of nurses and other hospital workers, especially those who had helped with transferring and walking. They appreciated nurses who assessed their pain and suggested or administered analgesia. They felt cared for by nurses who "hovered over" them or helped with personal care.

Letting in: accepting the new knee. Participants referred to how "bad" their own knees were and asked questions about the new one. (For more, see Questions Participants Had About the New Knee, page 58.) Postoperative participants said their muscles needed to "learn" to work with the new knee, which they described as stable and strong.

I just feel like it's part of my knee. I don't feel like there's anything metal in there, or there's anything different, and if you hold one of those joints in your hands, they're real heavy. But I don't feel it at all[horizontal ellipsis]. In fact, it feels more steady than [the other] leg, to stand on it.

Many wished they had seen an actual model. One preoperative participant had, but only after asking the surgeon to show it to her. Another asked his surgeon whether the operation would be videotaped so that he could watch it later.

Hurting and hoping. During the recovery period patients were in pain, and they hoped that regaining lost function would make it worthwhile.

Hurting: pain is the thing. Pain was a prevalent theme. Preoperatively, participants anticipated postsurgical pain; as one said, "The pain is the main thing with the knee." They expressed the hope that adequate analgesia would be given; some discussed pain management preoperatively with the surgeon or anesthesiologist. One quoted her anesthesiologist's advice to take pain medications at regular intervals rather than as needed, "because if you let that pain get ahold of you, it is really hard to get rid of." Another's physician had said, "Take pain medicine when I tell you to take it and you won't hurt."

Many preoperative participants said that postoperative pain was inevitable and that they would endure it.

I don't care how much pain medicine you give-it's still going to hurt. The pain medicine's going to wear off. And I know I'm probably going to go through [horizontal ellipsis] about two weeks of just a lot of pain. And then once that passes, the healing begins, it gets better.

All who underwent surgery reported immediate postoperative pain that was intensified by movement of the leg and by physical therapy. For some, the pain level diminished daily. Several reported being pleasantly surprised to find that they were in less pain than they'd anticipated: "I thought it would be a lot more painful than what it was[horizontal ellipsis]. I thought it would be a different type of pain." Yet others described severe, continuous pain. One explained how she would prepare someone else considering TKR for postsurgical pain.

Even if they give you morphine, the pain's still there[horizontal ellipsis]. I think that would be one thing I would tell a patient: that we can relieve the pain afterward, but you're gonna have pain. And the pain medications will ease it a little bit, but it will never take it away completely.

Pharmacology was the primary pain management strategy-nonpharmacologic measures such as meditation, walking, transcutaneous electrical nerve stimulation, and topical application of ice were less frequently reported. Some participants' care teams advised them about pharmacologic strategies preoperatively. Some noted that nurses' postoperative strategies helped. For example, a home health care nurse advised a participant to take smaller doses of oxycodone with acetaminophen (Percocet) more often, rather than larger doses at greater intervals, with good results: "That really worked for me." Another participant said, "I feel really good in the morning because they medicate me during the night[horizontal ellipsis]. They said they should give it to me before I start to hurting real bad." But another described losing sleep because of pain and repeatedly asking for analgesia.

I [horizontal ellipsis] just cried this morning 'cause it hurt so bad I couldn't stand it. And I couldn't get no more pills[horizontal ellipsis]. Just wish I could get a doctor in here to [horizontal ellipsis] give me something a little stronger.

Some participants worried about potential problems with analgesics (such as constipation, nightmares, becoming addicted, breakthrough pain, and reduced mental acuity), and some reported adverse effects.

Hurting: rehabilitation is work. Preoperative participants viewed the rehabilitation period as necessary to returning to normal life, saying that they knew it would involve "slow, hard work." Postoperative participants described physical therapy regimens including exercise, walking, and other measures as a necessary stage: "You have to give it time." Adaptive devices such as canes, walkers, and dressing aids (a trouser pull, for example) were used. Regular supervision was important to ensure adherence to the physical therapy program.

My second physical therapy session in outpatient was tough[horizontal ellipsis]. They put you on your stomach and they bend your knee[horizontal ellipsis]. They try to break up the scar tissue, and push on it until you scream[horizontal ellipsis]. I know they have to do it. I know I can't do it all on my own.

Some made steady progress: "I expected to be able to get up and walk right away, and I did." One found rehabilitation to be "not as bad as what I figured it would be," as did others. But many voiced frustration over a lack of progress.

How long is it gonna take? 'Cause I haven't felt like anything has changed. Everybody says it looks like it has, but I can't see that and I don't feel that.

Hoping: eyes on the prize. Participants envisioned a timeline for recovery, although the duration of the timeline varied, and some patients were more specific than others. Many predicted that they'd be independent, able to return to work, or both within three weeks. Some predicted it would take several months to a year. They emphasized the need to stay motivated during recovery: "Gotta keep your eye on the prize." They talked about pushing themselves or being pushed by providers or family members.

Since I couldn't go outside much, [the physical therapist] told me, "Just walk." So I walk from one end of the house to the other. I try to keep walking.

Participants believed that if they didn't perform the prescribed rehabilitation exercises, their new knees would be "stiff" or painful or wouldn't bend. Some said they thought that if they didn't bend their knees as prescribed, the surgeon would "take you back to surgery and bend it for you."

So I'm telling myself, and I'll tell somebody else, "Don't give up until you get full mobility back." Because if you don't gain it in this window of time [horizontal ellipsis] you're not gonna. You can't decide a year from now, "I'm gonna rehabilitate my knee and get more mobility." It's gone.

Many identified having a positive attitude, before and after surgery, as being necessary. One referred to this as "mind management."

I'm going to be back out hiking and biking and doing all those things I haven't been able to do. Get down on the floor with my grandkids. I have no fear that it's not going to be good; I know it's going to be good.

DISCUSSION

Limitations. The study has several limitations. Participants were recruited by convenience sampling from one health care institution, and their experiences may not be representative of all patients in all geographic regions. Another limitation was a lack of control over variables (such as the surgeon, the surgical technique, and the analgesic regimen) that could influence participants' experiences. And although we attempted to encourage participants to respond candidly, the fact that we identified focus group moderators and interviewers as health care professionals may have altered some of the responses we received.

FURTHER CONSIDERATIONS

Our study revealed four themes reflecting patients' experiences of anticipating and recovering from TKR, extending the findings of several other studies in this population.

Findings from this and similar studies suggest that patients need better education and support and highlight the role of the health care team, particularly nurses and physicians, in providing both. Patients aren't prepared to make the decision to undergo TKR, and they don't know what to expect in the postoperative period. Anxiety and pain, which were common before and after surgery, may adversely affect outcomes. Participants emphasized the benefits of peer support and of having competent and caring surgeons, anesthesiologists, and nurses. Descriptive and interventional studies should be conducted to evaluate strategies designed to eliminate or reduce the negative aspects of TKR (such as preoperative pain and anxiety) and promote positive influences (such as peer support). More research focusing on the patient's perspective is also needed to explore how patients' experiences influence their decisions about TKR surgery and affect their outcomes.

QUESTIONS PARTICIPANTS HAD ABOUT SURGERY

* When can I take a shower?

* How can I get up and down stairs?

* Will they give me a temporary wheelchair card for my car?

* How much pain will I have?

* When can I drive?

* What will the incision look like?

QUESTIONS PARTICIPANTS HAD ABOUT THE NEW KNEE

* What is it made of?

* How long will it last?

* What if the implant wears out?

* Is it heavy?

* Can I get through airport security?

* Do they use the original kneecap?

* Can I kneel on it?

* Will I sink if I go swimming?

REFERENCES

The study was approved by the institutional review boards at the university where the first author (AFJ) worked and the hospital where the patients were scheduled for their operations, a large urban medical center with an active orthopedic surgery department. All participants were informed of the nature of the study and signed consent forms. At the end of data collection, each participant was paid $25.

Instrument. All data collection sessions were tape-recorded and transcribed, with the transcripts serving as the units of analysis.

Preoperative focus groups. Four different focus groups with patients scheduled to undergo their first TKR within one month were held. The focus groups were moderated by one of the authors (RPM), a clinical psychologist with extensive experience in facilitating group discussion. One or two other research team members, RNs with research experience (AFJ and EF), served as assistant moderators, organizing participant recruitment and consent, keeping track of time, observing and recording nonverbal cues, and making other field notes.

Focus group participants were recruited from among people attending a class on total joint replacement, which was held in a conference room of the hospital where they would have the surgery. The nurse leading the class (not a research team member) mentioned the study at the end of class and invited attendees scheduled for a single TKR to remain if they wanted more information. Those who were interested met with one of us (AFJ), who explained the study. Participants signed a consent form and remained for the focus group session, at which participants and moderators were seated around a conference table. The session started with the moderator explaining basic concepts and expectations (for example, that there are no right or wrong answers in descriptive research and that it's hoped that everyone will participate).

Postoperative interviews. Potential participants-patients who had undergone TKR in the previous two months-were identified by the orthopedic unit's patient-care coordinator, an RN, who notified them of the study and obtained their permission to be contacted by the research team. Those who were interested in participating signed a consent form and scheduled a date for the interview with the research team member (NB), an RN graduate assistant with perioperative experience. Interviews took place on the post-acute rehabilitation unit or the patient's home. The researcher interviewed the patient using open-ended questions. Interviews ranged from about 15 minutes to about 60 minutes in length.

* According to the HCUP, acute care discharge disposition for TKR in 2005 was 41% to another institution such as a rehabilitation center or nursing home, 32% to home health care, and 26% to home.

REFERENCES