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- PATIENTS AND METHODS
Osteoarthritis (OA) is the most common type of arthritis (1, 2), with the number of individuals experiencing OA expected to double by 2020 (3). Although there is no cure for OA, there are efficacious drug and lifestyle treatments that can reduce pain and improve physical functioning. Failure to adhere to treatment recommendations means that individuals may achieve suboptimal symptom relief and incur personal, health, and economic costs (4).
Studies have found that ∼50% of individuals with chronic disease are adherent to medication recommendations from health professionals regardless of disease, treatment, or age (5). Adherence to arthritis medication is improved when individuals are older (6), female (6, 7), have a higher perceived health state (7), and when there is a clear statement of the drug's purpose (8). Greater comorbidity interferes with adherence (9), as do higher and more frequent dosing regimens and concerns about addiction (7). However, previous research has been based mostly on drug studies in clinical samples. Few studies have examined treatment adherence from the perspective of those in the community living with OA. Even fewer studies have examined adherence to OA pain medication using qualitative methods. In this study, we explored the experience of adherence to pain medication in older adults with OA because the greatest burden of symptomatic OA is in this age group.
PATIENTS AND METHODS
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- PATIENTS AND METHODS
The study of experiences lends itself to phenomenology (10, 11). An eidetic phenomenologic approach was utilized to describe the essence of the phenomenon (adherence to pain medication) as the participants experienced it in their daily lives (12). “Bracketing,” setting aside one's judgements, biases, and preconceived ideas about the phenomenon (13), is one component of eidetic phenomenology. Having conducted an extensive literature review on treatment adherence in OA, it was important for us to suspend preconceptions derived from existing research and recognize that adherence may be a reasoned decision by patients (14). For example, medication adherence is influenced by variables such as fear of addiction. However, we did not introduce this topic when questioning participants. Instead, when the issue of fear of addiction was raised by a participant, it was probed for further detail. The interviewer also remained neutral throughout the interviews and did not reinforce or discourage any topics discussed that were related to medication usage.
Participants were recruited from an existing cohort of 1,300 individuals with hip and/or knee OA residing in Ontario, Canada (15). Consistent with qualitative research, sampling was purposeful. Potential candidates were identified by 2 telephone interviewers who acted as key informants. These interviewers had established a relationship with participants through interviews over the previous 5 years. Candidates were considered suitable for interviewing if they had been articulate in previous interviews and expressed interest in participating in additional research. Twenty-seven men and women who resided in metropolitan Toronto, spoke English, and had reported previous physician visits for their OA were identified. Individuals who had undergone a hip or knee replacement in the prior year were not eligible for recruitment.
Data were collected through face-to-face interviews over a 4–5-month period. Because of their age and health, participants were interviewed in their homes where they were likely to feel relaxed and comfortable (16). Before each interview, participants were asked to gather all medications (prescription and nonprescription) and the interviewer (JS) discussed with them the doses and timing of doses for each medication. The structured component of the interview started with the following question: “Tell me about your OA. What is it like for you at this time?” This introduction was followed by, “What are you doing for your OA (e.g., what medications are you taking)? What other medications are you taking?” A number of probes encouraged participants to elaborate on their experiences with adherence to pain medication. These included: “Do you take/use the medication in the way the health professional suggested? Why/why not?”; “Do you take your medications regularly? Why/why not?”; “Some people have told us that they don't take their OA medications right away or in the dosage prescribed. What is your advice to people who adjust the timing/dosage of medications?”
Interviews were audiotaped and transcribed verbatim into Microsoft Word (Microsoft, Redmond, WA). As recommended by Kvale (17), the transcripts were verified against the tapes and downloaded in NVivo (18), a qualitative program with flexible features that helped organize, code, and retrieve data.
Analysis of the transcripts began after the first couple of interviews and was an iterative process whereby codes were identified immediately and then revised as more interviews were conducted. Analysis was conducted by one author (JS) as is customary with phenomenologic studies (19, 20). However, discussions regarding additional probes and emerging themes were reviewed by all the authors as data collection and analysis progressed. Data were analyzed according to Giorgi's procedures (19, 21). A total of 47 codes emerged from participants' descriptions of their adherence to pain medication (e.g., “prescribed medication,” “nonprescribed medication,” “barriers to adherence,” “comorbidities,” “pain,” “altering doses,” “minimizing OA”). These codes were organized into distinct themes.
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- PATIENTS AND METHODS
Nineteen participants (10 women and 9 men) ages 67–92 years were interviewed (7 refused and 1 was too ill to participate). As is common in phenomenologic research, 5 individuals were interviewed twice for a total of 24 interviews lasting 1–3 hours each. Additional interviews clarified topics discussed in the first interviews. In several cases, participants had a relative or aid present. We encouraged these persons to give us privacy during the interview but did not insist that they leave. By the 24th interview, no new thematic information was introduced. This sample size is similar to those recommended for phenomenologic studies (22, 23). All participants were white but varied in their education level (high school education or less to postsecondary education); most had comorbidities, such as heart disease and diabetes, for which they were also being treated. Although our interviews focused on adherence to pain medication, participants also talked about other strategies they used for pain management, which included use of health professionals such as chiropractors and physiotherapists, applying heat and/or ice, using devices, resting, having a positive attitude, learning to live with pain, and modifying certain activities/movements. Ten participants were currently prescribed both a pain medication and a nonsteroidal antiinflammatory drug (NSAID) for OA, 1 participant reported no prescribed medication for OA, 6 were prescribed pain medication only, and 2 were prescribed NSAIDs only.
Two themes characterized the adherence experience (Table 1). First, adherence to pain medication differed from adherence to other prescribed medications. Participants were reluctant to take painkillers, and when they did, they generally took them at a lower dose or frequency than was prescribed. Second, perceptions of and attitudes toward pain played an integral role in participants' adherence to painkillers. In general, despite their physical limitations, participants minimized their pain and claimed to have a high pain tolerance.
Table 1. Organization of codes (“meaning units”) into themes*
|Theme 1: Adherence to pain medication differs from other prescribed medications||Theme 2: Perceptions and attitudes toward pain play an integral role in adherence to pain medication|
|Participant discusses:||Participant discusses:|
| Prescribed medication for OA|| Pain|
| Prescribed medication for other conditions|| Participant's description of pain|
| Nonprescribed medication for OA|| Pain tolerance|
| Nonprescribed medication for other conditions|| Minimizes pain|
| Altering doses|| Uses humor|
| Increases doses|| Pain as a part of life|
| Attitude toward altering doses|| Fighting the pain|
| Seeks approval for altering doses|| Treating pain only after it is experienced|
| Behaviors unique to pain medication|| Time and place to treat pain|
| Pill organizers|| Other strategies to manage OA pain|
| Takes less pain medication than prescribed|| Activity restrictions|
| Reaction to side effects of pain versus other medication|| Devices|
| || Avoidance|
| Rationing|| Resting|
| Contradictions about adhering to prescription|| Positive attitude|
| Barriers to adherence|| Applies heat/ice|
| Negative attitude toward medications|| Exercises|
| Comorbidities|| Health care professionals, e.g., physiotherapist|
| Fear of addiction|| Other coping behaviors e.g., cup of tea|
| Fear of running out of medication|| Sleep|
| Negotiations with health care provider|| Hobbies|
| Advice to others regarding pain medication|| Participant experiments on own|
| || Misconceptions about treating pain|
| || Discusses how healthy they are|
| || Boasts about health|
| || Compares self with others|
Theme 1: adherence to pain medication differed from that of other prescribed medications.
Pain medication for arthritis ranged from over-the-counter treatments to prescription strength and were often labeled “take 4–6 times a day, or as needed.” With the exception of 4 participants who took their pain medications as prescribed (and reported varying pain relief levels), the remaining participants treated their pain medications differently from other medications. Specifically, participants were focused on the “take as needed” or “as required” instruction of the prescription. Participants were generally adherent to their other medications (although participants admitted that they sometimes forgot to take them); however, they purposefully did not take their OA pain medication as prescribed. When they took their pain medication, they took it in a lower dose or frequency than prescribed. Behaviors unique to pain medication were also exhibited. For example, unlike medications for other conditions, pain medications were not included in pill organizers. One participant filled her prescription for Percodan and then threw away the bottle. Another participant recorded on paper every plain Tylenol she took. This participant also filled a higher dose bottle (Extra Strength Tylenol, 500 mg) with a lower dose pill (plain Tylenol, 325 mg) to keep her pain medication intake to a minimum. Several participants regularly rationed their pain medication, especially when the amount of medication was getting low. They did not do this with other medications.
Participants cited several reasons for not wanting to take painkillers. Most claimed that they did not like to take pills in general (several were taking ≥20 pills per day) and that not taking their pain medication signified 1 less pill in their regimen. However, 18 of the 19 participants were taking at least 1 herbal remedy and/or vitamin for their arthritis, and 2 participants took 1 aspirin per day for “general health” reasons. Some participants claimed that they did not take their over-the-counter pain medication because it was not relieving their pain. However, none of these individuals took the maximum dose allowed.
Fear of addiction to painkillers was a concern for several participants. Participants stated, “I don't take things like that” (Percodan); “That is a hard drug…I think of the druggies on the street” (Percocet); “When you take any kind of pill for any length of time, your system gets used to them and they more or less expect them…it gets to be a habit more than a necessity” (Tylenol 3 with codeine). Some participants were not as forthcoming and sought support for their decisions from the interviewer. For example, 2 participants who claimed to not like taking pain medication on a regular basis said to the interviewer, “…you know what I mean?” (Tylenol 2) or, “…you understand what I'm saying?” (Tylenol 3 with codeine). One participant did not want to admit to her son that she was afraid of addiction. She told her son that she did not take her Tylenol 2 with codeine as prescribed because it was not effective and that she was afraid of constipation. When the son recalled this information during the interview, the participant leaned towards the interviewer and whispered, “I don't want to get addicted either.”
Interestingly, the practice of restricting one's pain medication intake was not recommended to friends and/or family members. During one interview, a participant who would not take pain medication reprimanded his wife who also had arthritis for not taking her pain medication as prescribed. He told her that if she wanted to relieve the pain, she needed to take more than just 1 aspirin or more than 2 Tylenol in a day. In an argument that followed her admission to taking 1 aspirin that day, he said, “What good is 1 aspirin?”
As part of the interview, we asked participants a hypothetical question about persons who alter the doses of their arthritis medications. Most interviewees claimed that it was irresponsible to alter medication doses. For example, one woman who was taking 2 of 3 prescribed Tylenol 3 per day told us, “I don't fool around with my medications. I know a few people who have…bless them…they are not around any longer.” Upon probing, it became apparent that all of these participants assumed that altering doses meant taking too much, rather than too little pain medication. Taking too little medication was not equated with nonadherence.
Ironically, the treatment of pain medication did not apply to higher-dose NSAIDs such as rofecoxib and celecoxib. Although participants indicated that they were trying to cut down or restrict their use of their pain medications, none indicated that they wanted to cut down on NSAID doses. Participants took these as prescribed and only altered their NSAID doses or stopped taking them when they felt these medications were not working or their side effects became bothersome. Participants were seemingly unaware that their NSAIDs had analgesic properties.
Theme 2: perceptions and attitudes to pain played an integral role in adherence to pain medication.
Perceptions of pain played an integral role in participants' adherence to pain medication. Despite obvious physical limitations, participants belittled their pain, often using humor to lighten previous admissions of suffering. One 92-year-old woman described her pain as so unbearable that it prevented her from tying her shoelaces or raising her hands to style her hair. Later, she claimed that she “wasn't as bad as lots of people.” Another woman who could not sleep at night because of her OA pain said, “As long as I can move it [her leg] and hobble around, I'm happy.” One 84-year-old man who was confined to a wheelchair because of his OA said about his pain, “My doctor is very, very pretty so I never ask any questions.” After talking about how discouraged he and his wife had become about his condition, he said, “Other than that, I am in fine shape!” and laughed. A 75-year-old man implied that pain belonged in his life. He said, “…that's how you know you're alive…you ache…I woke up one morning and didn't have an ache or pain in my body…I thought I was dead (laughter).” Another participant said, “I always have pain. That's part of my life.”
Some participants claimed that their low pain medication intake was due to a high pain tolerance. For example, “…it's tolerable. You learn to live with it. I'm not crippled…it just hurts to walk. Then you walk wrong because you're trying to…ease the pain as much as possible so you don't walk properly balanced. Then the other knee starts acting up. It's a losing battle (laughter). But you have to be tolerant.” Another participant who did not want the pain to “rule [her] life” felt that she could tolerate a certain level of pain and that pain medication would only mask, rather than help, her mobility problem. One participant said, “I used to take [painkillers] more often. I think I was a little softer then…I don't take them unless I am really upset about my pain.” This woman could not walk and woke frequently at night because of her OA pain; she modified many of her daily activities so that she could cope without taking pain medication, e.g., she rarely left home, performed daily chores at a much slower pace, sat in a comfortable armchair all day. She longed to relax in a hot bath but was unable to do so because her OA made it difficult to get into and out of the bathtub. Another participant who had difficulty standing because of her OA (her homecare worker greeted the interviewer at the front door) told us that she was in pain from the moment she woke up in the morning until she went to sleep at night, but that she was able to tolerate this pain: “I can stand more pain than most people because I started off when I was a little kid with the polio…my bowels were paralyzed and that was extremely painful…I just got over that when I took scarlet fever and…my head swelled up and I had a mastoid…the surgeon had to come…and operated on my ear on the kitchen table…I remember it vividly too…so I have had a lot of pain in my life.”
Fighting the pain allowed interviewees to build up their pain tolerance. One participant said, “if that's the way it's going to be, you're not going to let it knock you down…you're going to fight it…I think maybe that's better therapy than all the damned medicines you can take.” Another commented, “I think that you can give into pain so easily if you don't watch it.”
Although many participants had been recommended to take their painkillers in advance of an activity that might cause pain, and agreed that this was a good recommendation, none reported taking pain medication in this manner. Participants claimed they would take painkillers only when the pain became “very bad.” For example, one 67-year-old man recalled an instance when he took a Tylenol: “I was at a point where I couldn't stand up in the kitchen you know, to do any cooking or make a coffee. I was hanging on to the counter you know. I couldn't get my legs comfortable.” One woman reported only receiving 4 hours of sleep a night because of OA pain. She would wake up at 2:00 AM, make a cup of tea, and apply heat to her knee. Only if the pain remained excruciating would she take a third Tylenol 3 as prescribed. One participant with a prescription for Tylenol 2 to be taken every 4 hours took 1 pill every morning. She would only take a second pill on Thursdays when returning from shopping. Others had difficulty determining what “bad” was. One woman said, “[before going out]…I would probably have the aspirin with me in my purse and if I started to feel that [the pain] was holding me back, I would take it.” However, she estimated that she had not taken an aspirin in the last 2 years. Another woman said, “I have seen me when I can't even get out of bed in the morning. But I don't take a Tylenol then. I just walk to the kitchen. My latest trick is to make a cup of tea.”
Finally, certain types of pain were believed to warrant medication. For example, one participant thought her aunt who was screaming on her “death bed” for pain medication should have been given morphine. Other participants had no opposition to taking pain medications as prescribed for short-term reasons such as surgery or recuperation from falls.
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The individuals in this study perceived and behaved toward their pain medication differently than other medications. They took it in lower doses and less frequently than prescribed and appeared invested in taking pain medication only when they felt it was absolutely necessary. This may partly explain why few participants appeared to be achieving pain relief. Other research finds that a substantial percentage of individuals with OA taking NSAIDs or acetaminophen continue to report pain (24–26); the results of those studies may be due to adherence behaviors similar to those demonstrated in our findings. We discuss our findings, comparing them with the literature on medication testing, activity restriction, and fear of addiction. We then discuss participants' willingness to take NSAIDs and other herbal remedies that may contain pain-relieving properties. We close by briefly addressing disease acceptance and the symbolic role of pain medication as well as the instruction “take as needed,” which appears on the labels of many over-the-counter and prescription-strength pain medication.
Patients with a range of health conditions have been found to hold opinions about the value of their medications and use explicit or implicit testing processes to establish their limits and levels of needed relief (27, 28). However, the participants in our sample did not appear to be testing their pain medication so much as choosing not to take it at all. These findings are consistent with those of Ross et al (29), who found that senior adults with musculoskeletal pain considered pain medication a last resort for management of pain. To justify low pain medication intake, participants minimized pain or claimed to have a high pain tolerance. This strategy had limited success because most participants experienced significant ongoing pain. Many maintained functioning by restricting their activities. The failure to accept pain and choice to restrict activity is a coping response referred to as “subversion” (30). Unfortunately, this response comes at a cost to older adults as increasing numbers of activity limitations may have social and psychological consequences for well-being (31). Moreover, from a clinical perspective, activity restrictions may be a marker for poor adherence to pain medication. By asking their patients about activity restrictions, clinicians may be able to identify those individuals who are not managing their pain due to inadequate levels of pain medication.
Fear of addiction was a concern for some participants, although this concern was not always explicitly articulated. Fear of addiction to pain medications has been reported elsewhere (32–34). However, this fear may be unwarranted because prescriptions of stronger pain medications, such as opioids, have not been found to lead to addiction (35, 36) and appear to be successful in treating pain in the elderly (37, 38). Interventions to educate persons with OA about safe doses of opioids might benefit those with addiction concerns.
A number of participants claimed they avoided painkillers because it meant 1 less pill in their daily regimen. Given the many medications taken and the pain symptoms experienced, it is unclear why pain medication was singled out as the medication to avoid. It may be that participants prioritized their health conditions and believed that, because their pain was not life threatening and was tolerable, it could be sacrificed.
Unknowingly, participants were taking pain medication as part of their NSAIDs. Because these were taken as prescribed, it may partly explain why many patients with OA identified NSAIDs as more helpful than other analgesics (25). Furthermore, if acetaminophen in maximum daily doses is less effective than NSAIDs for pain relief (24), then our findings suggest that individuals with OA who rely on acetaminophen alone may achieve even less pain relief because they are not taking it as prescribed. At the same time, participants were using other herbal and alternative remedies for their pain. Willingness to take herbal medicines over pain medication has been reported by others (14). Ironically, the herbal industry in Canada is not regulated, so participants were not aware of the ingredients of many of these medicines. According to one source (39), some products (e.g., devil's claw, glucosamine, chondroitin) have pain-relieving properties and may contain a painkiller and/or NSAID component. Therefore, participants were probably achieving some analgesic effect from their daily doses of herbal medication. Future research is needed to determine whether pain medication usage is affected by knowledge that other substances, such as herbal remedies, have analgesic qualities.
Studies show that medication adherence is influenced by subjects' acceptance of their disease or condition (28, 30, 33). In one study on asthma, Adams et al (33) found that “deniers” (those who did not assimilate their condition as part of their personal identity) claimed that their condition had no effect on their lives and rarely took reliever medications. Participants in our study did not deny having OA, but rather denied that the pain associated with their arthritis warranted treatment. Dowell and Hudson's research (28) on medication adherence indicated that understanding the symbolic role of pain medication and how pain challenges an individual's identity is key to addressing low adherence. If individuals with OA do not consider OA pain to be integral to their illness, they may not recognize the need for medication to specifically treat OA pain. A similar finding has been established in other research where elderly individuals who were potential candidates for total joint arthroplasty were unwilling to undergo the procedure partly because they viewed OA as a normal part of aging (40).
Finally, the instruction “take as needed” or “as required” appeared to give license to many participants to alter medication dose and may have reinforced their desire to minimize their pain. Specifically, for most participants, pain was not considered “bad” enough to warrant pain medication despite the fact that it impeded daily activities. This finding suggests that instructions for pain medication need to be revisited and the “take as needed” instructions omitted or clarified by clinicians. Participants might also be more likely to take pain medication if they are labeled “arthritis medication” as opposed to “painkillers.”
There are some limitations to our study. Our sample was purposive. Individuals who were not receptive to interviews may have articulated different concerns and/or adherence behaviors. Future research should pursue the issues raised in this research in other samples that include a greater range of ages and cultural backgrounds. We also did not consider the physician's perspective in this study. It is possible that patients' reluctance to take pain medication reflected their physicians' concerns about addiction and/or medication tolerance. It is also possible that physicians were not clear or consistent in their instructions regarding pain medication, especially over-the-counter products. Adherence to other therapies for OA (e.g., topical ointments, physical therapy, herbal remedies) was not examined. Additional questions about the role of health professionals in adherence, as well as use of other types of treatment would provide additional context for these results. As with all qualitative research, investigators with a different perspective or qualitative tradition (e.g., hermeneutic phenomenology, grounded theory) may have differed somewhat in their analysis and interpretation of the data collected. At the same time, we have provided numerous statements in participants' own words to illuminate the themes presented.
Despite these limitations, this study found that individuals with arthritis have clearly articulated reasons for deciding to alter their pain medication. These decisions need to be considered when prescribing pain medication for OA and when examining the effectiveness of OA pain management in older adults. Based on our findings, a number of implications have been discussed. Activity restrictions may be a marker for poor adherence to pain medication and may identify those individuals who are not taking pain medications as prescribed. Addiction concerns may be alleviated by interventions to educate persons with OA about safe doses of opioids. Participants were unknowingly achieving some analgesic effect from their daily doses of NSAIDs and possibly their herbal medications. Future research is needed to determine whether knowledge that these substances may contain pain-relieving properties would further affect pain medication usage. Finally, instructions for pain medication need to be revisited and perhaps omitted to encourage older adults with OA to take pain medication in doses that provide pain relief.