Individuals' experiences living with osteoarthritis (OA) and the broad array of personal and social factors that can affect its impact have begun to generate considerable research interest. OA is the most common type of arthritis and is a leading cause of pain, physical disability, and health care service use (1–4). Studies have examined the biographical disruption that arises as a result of the disease (5, 6), reactivity to stress (7), coping efforts to minimize the impact of OA (8–14), social support (15–19), the role of personality and individual differences in OA outcomes (20–23), and factors affecting decision making and expectations for treatment, especially hip and knee arthroplasty (24–30).
At the same time, much of the current research is limited to perceptions of older adults with severe OA. Among the key findings from several studies is the tendency of many older adults to normalize their disease (6, 25, 31). That is, symptoms such as pain and stiffness are perceived as common and expected as one ages, and not as indicative of a treatable health problem. Less well understood is whether middle-aged adults with OA and those with less severe symptoms have disease experiences similar to older adults. Also missing is a broader context within which to place individuals' experiences living with OA. That is, we lack information that compares individuals who define themselves as having OA with those who do not live with a chronic disabling illness. Is the meaning that the latter group ascribe to their health experiences similar to or different from that of individuals with OA? This study compares the experiences of middle- and older-age adults who report mild or moderate OA symptoms with one another and with individuals with no chronic health conditions. We focused on identifying similarities and differences in the signs and symptoms reported by persons with OA and controls of comparable age, perceptions of the meaning of symptoms in individuals' lives, and reports of the impact of health changes on activities and roles. Such comparisons can improve our understanding of the needs of persons with OA and can better link individuals' health status to the broader framework of their lives (32–34).
PARTICIPANTS AND METHODS
Separate focus groups were held with individuals who 1) reported OA symptoms (OA groups) or 2) were not diagnosed with any chronic illness (control groups). Sixteen focus groups (10 OA and 6 control groups) were conducted. On average, groups contained 5–6 individuals. Recruitment strategies acknowledged that persons with OA often report an insidious onset of symptoms and that they are infrequently referred to a rheumatologist. Therefore, a purposive sample of individuals with mild or moderate symptoms were recruited from general practitioners; physical therapy clinics; The Arthritis Society, Ontario Division; senior centers; fitness centers; and advertisements in community newspapers. Several community newspapers with a broad spectrum of socioeconomic readership characteristics were used. OA participants fulfilled American College of Rheumatology (ACR) criteria ([a] knee, hip, and/or groin pain; stiffness for <30 minutes; knee crepitus; bony tenderness and enlargement of the knee; and no unusual, palpable warmth; and/or [b] some hand pain, aching, or stiffness and bony enlargement of ≥2 prespecified joints) (35–37), were at least 40 years old, had not been diagnosed with other musculoskeletal conditions or disabilities, had not experienced an acute injury in the previous 3 months, and were not on a waiting list for surgery (e.g., joint replacement). For control participants, the same eligibility criteria applied except that individuals were excluded if they had been diagnosed with OA and/or met the ACR criteria. A similar recruitment strategy was used for controls using recruitment materials in senior centers, fitness centers, and various community newspapers. To exclude individuals with potential fibromyalgia, screening questions asked both groups about generalized muscle soreness or tenderness, chronic pain, and difficulty sustaining attention to tasks.
A telephone screener established eligibility. A total of 224 individuals were screened. Most participants responded to advertisements in community newspapers. Seventy-six individuals (33.9%) were not eligible to participate because they had symptoms that were too severe (e.g., waiting for joint replacement surgery) or had other health conditions that created significant disability. Of the remaining 148 participants, 27 (18.2%) were not interested in participating and 31 (20.9%) were interested but were either unable to attend the group sessions or did not show up at their assigned session. A total of 90 individuals (61%) were eligible and participated in either an OA or control group.
Separate recruitment advertisements/posters for OA and control respondents invited individuals to participate in a study aimed at discussing either the experiences of living with OA symptoms or aging and health experiences. A focus group methodology was chosen to provide information in an environment where individuals could disclose and share experiences (38). Group compositions varied. At least 2 OA groups comprised either all women or all men. Focus groups were also conducted with either predominantly older respondents (>55 years of age) or younger respondents and with respondents that varied in symptoms, with some group participants reporting OA mainly in the hip or knee and others reporting symptoms in a number of joints. Mixed sex, age, and symptom focus groups were also conducted. For control groups, at least 1 group of all women or men was conducted, as well as groups with predominantly older versus younger respondents.
Identical questions were asked of each group, replacing OA symptoms with “health and aging,” “age-related health changes,” and similar phrases in the control groups (Table 1). Groups lasted ∼1.5 hours. Discussions were audiotaped, transcribed, and imported in N6 software (39). Informed, written consent was obtained from all participants. At the end of the discussions, participants completed the measures described below.
Table 1. Focus group questions*
| 1. Have there been any changes in your health that you feel are a result of your OA? Can you describe these changes, if any?|
| 2. What, if anything, has been the impact or effect of these OA symptoms on your life?|
| 3. What, if anything, have you done about your OA?|
| 4. How do you feel about your OA and its impact? What about the future?|
| 5. Has your OA affected your relationships with others or do you anticipate it will affect your relationship with others?|
|Healthy control group|
| 1. Have there been any changes in your health that you feel are a result of aging? Can you describe these changes, if any?|
| 2. What, if anything, has been the impact or effect of these age-related health changes on your life?|
| 3. What, if anything, have you done about changes in your health due to aging?|
| 4. How do you feel about your health and aging and its impact? What about the future?|
| 5. Has your health as you've aged affected your relationships with others or do you anticipate it will affect your relationship with others?|
Demographic information included age, sex, education, income, and race.
Short Form 36 Health Survey.
Thirty-six items from the Short Form 36 Health Survey (SF-36) assessed health status. Higher scores indicate greater physical or mental functioning. The population reliability for the physical and mental subscales is 0.95 and 0.93, respectively (40).
Western Ontario and McMaster Universities Osteoarthritis Index.
The 24-item Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) assessed pain, stiffness, and function (41). Responses were 0 (none), 1 (mild), 2 (moderate), 3 (severe), and 4 (extreme). Higher scores indicate greater pain, stiffness, or functional limitations. Reliability for the pain, stiffness, and physical function scales was 0.87, 0.80, and 0.97, respectively.
Disabilities of the Arm, Shoulder and Hand questionnaire.
The 30-item Disabilities of the Arm, Shoulder and Hand questionnaire (DASH) measured disability and symptoms related to upper-extremity musculoskeletal disorders (42). Reliability for the scale was 0.97.
Transcripts were analyzed using content analysis, a method for systematically making inferences from text (43, 44). All transcripts were read by one of the authors (MAMG) to identify broad themes and to develop a preliminary coding scheme. To verify the credibility of the codes, 2 authors (AMD, PRF) reviewed different transcripts and the coding scheme. Transcripts were subsequently coded by 2 of 5 trained coders working independently. The coders met frequently to ensure consistency and transparency in the coding. Discrepancies in coding were resolved through discussion. Independent t-tests compared scores on the questionnaires between the OA and control groups.
The 10 OA groups included 32 women and 21 men, and the 6 control groups included 21 women and 16 men (n = 90). Participants ranged in age from 39 to 88 years (mean ± SD age 57 ± 11 years). The sample included individuals of different racial and cultural backgrounds, education, and income levels. There were no significant differences between OA group participants and control participants in sex, education, income, or race. However, OA group participants were older than controls (mean ± SD age 59.8 ± 12.1 years versus 53.2 ± 7.5 years) and were more likely to report comorbidities (P < 0.01). Comorbid conditions were nondisabling and non–life threatening, such as high blood pressure, cholesterol problems, and minor vision problems. OA group participants reported an onset of symptoms ranging from a couple of months to several years. OA participants reported poorer physical functioning on the SF-36 and WOMAC; greater WOMAC pain and stiffness; and higher disability of the arm, shoulder, and hand (DASH questionnaire; P < 0.01). There were no significant differences in mental health (Table 2).
Table 2. Health status measures*
|SF-36 version 2|| || || |
| Physical component||42.7 ± 8.8||54.8 ± 4.8||0.00|
| Mental component||49.8 ± 12.2||52.7 ± 8.5||0.22|
|WOMAC|| || || |
| Physical function||32.6 ± 13.1||19.3 ± 4.7||0.00|
| Pain||10.3 ± 3.9||5.8 ± 1.6||0.00|
| Joint stiffness||4.6 ± 2.0||2.8 ± 1.2||0.00|
|DASH|| || || |
| Transformed score||18.4 ± 16.6||4.9 ± 7.6||0.00|
Overlap of signs and symptoms.
Participants in both groups mentioned a range of signs and symptoms. OA participants of all ages primarily discussed 5 physical symptoms: pain, stiffness, fatigue, joint cracking, and swelling. Although there was some overlap, the control groups emphasized a physical “slowing down” and cognitive and emotional changes. These changes were more evident with age. There was also greater variability in their discussions. The major signs and symptoms and descriptors of each group are presented in Table 3.
Table 3. Signs and symptoms of osteoarthritis and aging
|Osteoarthritis groups|| |
| Pain||Pain, shooting, throbbing, sharp, dull, burning, migratory, hot, achy, sore, hurts, excruciating, kills me, bursting, weakness, searing, cramping, tinges, pins and needles, tightness, tearing, nagging|
| Stiffness||Stiff, clumsiness, numbness|
| Fatigue||Fatigue, less energy, drained, tired, difficulty falling asleep/staying asleep, unrefreshing sleep|
| Joint cracking||Joints crack, joint locking, clicking, snapping, popping, grating|
| Swelling||Swelling, disfiguring|
|Healthy aging groups|| |
| Concentration||Concentration problems, forgetful, memory problems|
| Energy changes||Lack of energy, slowing down, less stamina, more sedate, more energy, sleep better, feel groggy, need to rest|
| Physical changes||Less flexible, less strong, less quick, slower reflexes, slower reaction time, short of breath, in better shape, weight gain, hair loss, eyesight problems, digestion problems|
| Emotional swings||Apathy, less patience, less ability to handle stress, less upset, quieter, calmer|
| Wisdom||Wisdom, acceptance, understanding, less tolerance of others, less maternal|
| Pain||Aching, pain, no pain|
| Sexual changes||Less sexual drive|
Pain was mentioned infrequently in the control groups regardless of the age of participants and was characterized as minor, transient, and associated with “overdoing it” in physical activity. Stiffness was mentioned by some control participants, but was described as infrequent and of short duration. In OA groups, fatigue was often described as debilitating and as occasionally restricting activity. Some individuals linked fatigue to pain and noted difficulties falling asleep or staying asleep, whereas others ascribed difficulties in sleeping to fatigue. In some cases, sleep disruption signaled that something was “not normal” and had resulted in individuals consulting a physician. Although some control participants noted more energy with age, most talked about “slowing down” and having “less stamina.” Physical changes included being less flexible, strong, and quick, but problems were not associated with pain or sleep.
Because OA participants were selected partly based on their reports of pain, differences between the groups in this symptom were not surprising. However, the breadth, depth, and complexity of the OA group discussions of pain were notable. Participants of all ages used a range of descriptors suggesting multiple dimensions including the quality of pain (e.g., sharp, throbbing) and intensity of pain (e.g., mild, severe) (Table 4). OA group members also described at length other dimensions that tempered the quality and intensity of their symptoms. In particular, they discussed a wide-ranging frequency, duration, and predictability of symptoms. Symptoms were sometimes associated with times of the day, weather conditions, or seasons, and some symptoms were absent when at rest. Some respondents reported a sudden onset of symptoms, whereas others reported a gradual, variable onset. The location of OA pain also varied. Many participants described a circumscribed area of pain (e.g., right knee), but some reported pain in several joints and a few noted that symptoms “migrated” and were not confined to one area. Pain in the extremities (i.e., fingers and feet) was reported as particularly intense and debilitating. Variability in descriptions of pain was not related to the age of participants or the location of their OA (i.e., knee, hand). Although discussions of pain were uncommon in the control groups, the dimensions used overlapped with those of the OA groups. Control participants mentioned pain intensity (mild), frequency and duration (rare and of short duration), and predictability (reliably linked to overexertion in physical activity).
Table 4. Dimensions of measurement
|Quality||e.g., “sharp,” “throbbing,” “aching,” “weakness,” “stiffness,” “drained,” “fatigued”|
|Intensity||“I've got a very severe pain on the inside of my knee” (group 2, 380); “I have a little pain here” (group 2, 406).|
|Frequency||“Two weeks bad and then 2 weeks good, and it's all like that” (group 1, 1080–1081); “It wakes me up during the night a lot” (group 4, 60).|
|Duration||“I find as the day goes on, things ease up” (group 3, 1253); “The pain gradually is disappearing” (group 3, 188).|
|Time of day or season||“In the evenings I'm in a lot of pain” (group 3, 381); “As the weather changes, my hand changes” (group 4, 214).|
|Regular versus sporadic/unpredictable||“[The pain] goes away, comes back, goes away, comes back” (group 6, 45–48); “Sometimes it comes suddenly” (group 2, 408).|
|At rest/upon movement||“When I'm sitting or laying down or anything like that, I have hardly any pain” (group 8, 100–102); “I got a pain only when I am walking” (group 8, 442).|
|Location||“One knee might hurt, the other knee might hurt at the same time or sometimes they take turns” (group 6, 150–152); “I have what is, what I call migratory osteo. It just travels around my body” (group 5, 282–284).|
Perceptions of the meaning of symptoms in individuals' lives.
Despite talking at length about symptoms, OA respondents often minimized or normalized their condition. One participant noted, “[I have] nothing much to complain [about], except for this stiffness and shooting pain” (group 3, transcript line numbers 1675–1676). Another younger participant said, “It is sort of a wake up call I suppose, that I am getting on [in] age” (group 6, 601–602). Although middle-aged respondents minimized their symptoms, this was more commonly done among older participants. Many OA participants reported that they had relayed their concerns to health professionals who either ignored symptoms or suggested that they were a normal part of aging. Comments included: “My doctor tells me all the time, ‘You’re just getting older'” (group 2, 660–661); “I have a family doctor who's a doll … But as far as diagnosing illnesses, I mean, he says, ‘What do you want, you’re getting on'” (group 4, 304–307); and “So I showed my family doctor and she said it's going to get worse you know. Get used to it” (group 8, 803–805). A middle-aged participant reported: “I saw the doctor who said, ‘Well … there’s nothing wrong with you. It's just old age. You're just, you know, you're just growing old.' And I refuse to believe that because a guy that's healthy and runs every day you know, shouldn't all of a sudden just stop doing the stuff he wants to do!” (group 9, 48–56).
Although some individuals in the control groups noted that they did not think about aging and health at all (e.g., “I am the same … it never occurred to me that I am getting older” [group 16, 470–471]), more common was the perception of the need to be aware of their limits: “As I get older, I'm more aware of maybe what's in store and just trying to be a little more careful” (group 11, 1212–1216).
There was a substantial difference in the discussions concerning coping responses and perceptions of the ability to control health changes. OA participants emphasized a lack of control and the need for acceptance of health difficulties. They discussed the need to persevere with activities despite the relative absence of effective strategies to manage symptoms: “I'm in pain; I'm suffering, you know. But you learn to live with that” (group 4, 812–813). Others noted:
Participant 1: [It's] mind over matter: I fight it, believe me I fight it …
Participant 2: It's just like the children's book, “The Little Engine That Could.” [laughter]
Participant 3: I think I can, I think I can (group 7, line 91 [participant 1] lines 806–809 [participants 2, 3]).
Rather than acceptance and perseverance, control group members perceived that they had significant control over their health and emphasized a healthy lifestyle to maintain or improve health. One man noted, “I am paying closer attention to my health … you're more aware, you know. I am eating better, getting lots of exercise, lots of sunshine, drinking lots of water and avoiding certain foods that are known to be, you know, detrimental. So I feel stronger now and I guess I have a strong belief that the body is able to heal itself if we get out of the way” (group 14, 173–182).
Nearly all OA participants had made changes to their lifestyle to try and minimize symptoms. Many were unwilling to use medication. Instead, by remaining vigilant and monitoring symptoms, they amassed information on activities and foods that they perceived were harmful. For these individuals, treating pain with medication was seen as masking rather than curing symptoms, and was seen as potentially harmful because of an increased risk of unwanted side effects. Unfortunately, unlike members of the control groups who reported a clear cause-effect relationship of activity to subsequent pain, OA participants were unable to guarantee relief from symptoms based on their lifestyle changes alone. This was linked to upset feelings, helplessness, and depression.
Because of their attention to lifestyle, respondents in the control groups often believed their health was better than others. They rarely expressed negative affect or concerns about the future: “I am quite pleased with my health … when I compare myself with my colleagues who are working with me, I don't have much complaints at all” (group 14, 1088–1093). In contrast, participants in the OA groups frequently expressed frustration, anxiety, and fear about the future. In particular, younger individuals were more upset by their OA than older respondents. This was mainly because OA was not seen as normative in this age group. OA was also viewed as more disruptive of current activities and threatening to future plans. A man in his late 40s whose job kept him standing for much of each work day said, “I started having problems when my son was 4 or 5 years old. He is now 14. I've missed out on all those years where I could have taught him how to catch … how to hit a ball … I've had to send them, to sign them up for different sports: to get somebody else's father to work with them and teach them to do that. … All of the things I had planned that I was going to do with my children, I couldn't do because of this. Really it was psychologically very difficult to accept” (group 9, 504–527).
Long delays between experiencing symptoms and an OA diagnosis made OA symptoms more difficult to deal with. Several younger participants attributed this delay to health professionals not considering OA as a possibility because participants were “too young” to have arthritis. In contrast, younger participants in the control groups were often more optimistic about their future than their older counterparts: “I've worked hard for the last 35, 40 years … so I really deserve another 50 years. I think that's possible … maybe with a bit of luck and careful management of my activities. I want to bank that. I deserve that” (group 12, 740–752).
Impact of health changes in OA and control groups.
OA participants reported that a range of important activities and roles were affected by their condition. Most frequently mentioned were leisure activities, social activities, close relationships, community mobility, employment, and heavy housework. (Personal care activities such as dressing, eating, and bathing were rarely mentioned.) Both middle- and older-age adults described the loss of valuable roles, although older participants were more likely to focus on leisure activities such as travel and less likely to discuss employment. Loss of many of these activities was described as extremely upsetting. For example, one woman noted that dancing was a particularly valued activity. She spoke to her physician, “I said, ‘well can I still take dance class?’… And he said, ‘no,’ and I went home and I cried. And I cried and cried because I was a very active person, very active” (group 8, 192–194).
The impact of symptoms on social activities and interpersonal relationships was discussed in all OA groups across all ages. Some participants noted that symptoms affected their mood and made them frustrated and annoyed with others. In response to the impact on leisure and social activities, family and friends were variously described as supportive or unsupportive. Two barriers to receiving support noted particularly by younger OA participants were the “invisibility” of symptoms and their unpredictable nature. Participants reported that others sometimes exhorted them to engage in activities when they were in pain, were disappointed when plans were unexpectedly canceled, or were suspicious about the inability of participants to engage in some activities: “She doesn't understand that someone that is in this type of pain cannot do things. You cannot do things. And you're not babying yourself. It's just that you can't do it” (group 4, 940–945). Another person commented: “Because nobody can see it … [but] it's a disease and that's what's causing me the pain. It's not just in my head and I'm not just trying to get out of having to clean out the locker room or do this or that or the next thing, which is what I got accused of for years and years” (group 9, 1362–1368).
Members of the control groups reported little impact of their health on activities and roles. Some respondents reported less interest in sexual activity. Others noted that energy and stamina changes had resulted in decisions to forgo some physical activities. However, these activities were generally replaced with new ones. Changes in energy also sometimes interfered with socializing. Typically, participants did not associate changes with health problems. Instead, changes were discussed as a natural progression of interests that comes with time and maturation.
This study compared middle- and older-age adults with OA with individuals who had no chronic illness to learn about similarities and differences in their health experiences. The findings revealed differences in the breadth and depth of symptoms reported, as well as in their meaning and impact on life, with relatively little overlap between OA and control participants.
When OA group participants were compared with controls, consistent differences in pain emerged. In part, this is attributable to the study's recruitment strategy. Noteworthy, however, was that pain was the predominant early signal to individuals with OA that all was not well. Control participants rarely discussed pain. When they did, its transient nature, aching quality, and clear link to activities involving physical exertion differentiated it from pain described by OA participants. In addition, OA groups described pain using multiple dimensions, many of which are not typically assessed. Rather than focus only on the quality or intensity of symptoms, as is assessed in many pain measures (45–51), participants also emphasized the frequency, duration, and unpredictability of pain because these dimensions were tied to decisions about whether to perform activities. Moreover, relevant to future research and clinical assessment was that there was no consistent experience of OA pain quality, a finding similar to other studies (47, 48). OA participants of all ages reported a vast range of pain descriptors not linked to the location of their disease. These findings suggest that a single question or summary score of pain severity may not accurately capture individuals' experiences.
OA participants' experiences were also shaped by health services. They reported being at odds with physicians either because physicians made no recommendations to manage symptoms, attributing them instead to aging, or because physicians recommended pharmacologic management of pain with little or no discussion of long-term effects and self-management strategies. Participants were often frustrated and uncertain about where else to seek help. As a result, some participants lost trust in their physician or did not follow their advice. However, the diversity of symptoms reported by OA participants underscores some of the complexity in diagnosing OA. Taken together, these findings point to the need for diagnosis to occur in concert with more comprehensive disease management strategies that take into account a range of options and preferences.
Overlap between the OA and control groups occurred in their discussion of energy changes. However, only OA participants discussed fatigue as a negative, sometimes debilitating aspect of their lives. For some, fatigue was linked to pain, sleep, and mood. However, the causal relationships were unclear. For control participants, a lack of energy was not evaluated negatively, and instead was described as “slowing down.” Stiffness, swelling, and joint cracking were also described mainly by OA participants. Some participants believed that these signs, especially stiffness, were early precursors of subsequent pain. As such, they may merit greater attention in defining early OA.
Unlike control respondents, OA participants discussed a wide-ranging impact of their condition on participation in life roles and activities. The areas reported as being most affected were not those typically assessed in existing OA studies. Specifically, participants focused on remaining independent and employed, engaging in leisure and social activities, and maintaining supportive close relationships. To date, research on OA has focused primarily on assessing functional limitations. The findings of this study suggest that the impact of OA on broader social roles warrants increased attention across middle- and older-age persons.
Disruption and loss of roles were perceived as frustrating, upsetting, and depressing. Invisibility and unpredictability of symptoms was also related to negative emotions. Middle-aged OA participants were particularly upset about the early onset of OA and by the lack of support from others. Responses to these stressful feelings were influenced by health professionals' assertions that nothing could be done about OA. As a result, OA participants reported increased vigilance and monitoring of OA and perseverance of activities despite symptoms. These strategies are sometimes omitted from the coping checklists used in OA research. One reason is that many checklists were adapted from coping studies examining acute stressors and not chronic illness. The results suggest that additional attention needs to be paid to individuals' perceptions of their coping or self-management options and the relationship of these perceptions with well-being. Middle-aged adults may also benefit from additional interventions and support.
An issue in this research that has implications for other studies is the recruitment of persons with less severe OA symptoms. Diagnostic evidence from magnetic resonance imaging (MRI) and radiographs is not always feasible to recruit participants. Moreover, the relationship of symptoms with MRI and radiographic evidence of OA is not always clear. Individuals with radiographic evidence of OA may report few or no OA symptoms, whereas others may report severe symptoms with relatively minor radiographic evidence. Reports among many individuals of an insidious onset and even a changing location of OA symptoms also make it difficult to use MRI and radiographs (52). These issues create a dilemma for researchers trying to identify persons with OA. In this study, we adopted several strategies for reasonably identifying participants. However, it is possible that some individuals in our OA groups would not have been considered to have OA if other criteria were used, and that others in the control groups might have had nonsymptomatic OA. Greater precision may be possible in the future if efforts are made to better define mild or moderate OA.
There are several limitations to this study. Our sample was small, purposive, and may not have captured all the experiences of individuals with moderate OA symptoms. Although efforts were made to include a wide age range and diverse socioeconomic and cultural groups, our findings should be replicated with other samples to enhance their generalizability. Also, although costly and difficult to conduct, longitudinal research comparing self-report and clinical data has the potential to further define OA, to assess its impact, and to inform self-management and treatment interventions. Despite these limitations, this study illuminates personal and social factors associated with OA by comparing the experiences of individuals living with OA symptoms and controls. The study highlights directions for future research and can improve our understanding of the needs of persons with OA.
Our thanks to Sonja Kasapinovic, Jennifer Boyle, Novlette Fraser, Cristina Mattison, and the coders, as well as 2 anonymous reviewers for their helpful comments.