Life with Arthritis in Canada : A personal and public health challenge

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Chapter Three: Disability and quality of life

Table of Contents

• Introduction
• General health
• Psychological/mental health and stress
• Co-existing chronic conditions
• Pain and activity limitations
• Disability due to arthritis
  • Overview of activity limitations due to arthritis
  • Activity limitations due to arthritis by sex and age
    • Mobility
    • Self-care
    • Domestic life activities
    • Participation in the labour force
    • Community, social and civic life.(CSCL)
• Summary

"The days of covering up are over, as my condition is very visible and, naturally, people stare. I could wear the most expensive dress dripping with diamonds, but all they would see is my condition."

— Person living with ankylosing spondylitis

"It has been a very difficult journey living with this disease for over twenty-five years. The biggest frustration has been the unknown— but also the progressive deterioration, not only physically but also emotionally as I struggle to live with the pain, the deformities, the frustrations and the embarrassment of a body that just won't cooperate and perform the way that I would like it to. It's difficult to stay enthusiastic about life and life's activities when 'life' is slowly draining from my body."

— Person living with rheumatoid arthritis

Introduction

Arthritis is a leading cause of pain and disability in North America.^{1 2 3 4} Disability is a term that refers to difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experienced by an individual with a health condition in interaction with contextual factors. Disability associated with all forms of arthritis results from:

• Impairments: problems in body function or structure such as reduced mobility of joints, pain and body stiffness;⁵
• Activity limitations: limitations or restrictions in carrying out activities of daily living including self- care (showering, toileting and dressing) or mobility (transferring from beds to chairs and walking around the house);^{2 3 5 6 7 8}
• Participation restrictions: problems an individual may experience in their involvement in life situations such as working or participating in social activities.⁵

An individual's experience with impairments, activity limitations and participation restrictions may vary depending on a number of factors, including the type of arthritis and the number of joints that are affected.⁵ These, in turn, affect an individual's perception of their own health and overall health state: perceived poor health in people with arthritis-related disability is strongly associated with limitations in performing regular daily activities.^{5 9} In addition, studies have found that people living with arthritis are more likely than those without arthritis to experience depressive symptoms and have higher rates of mood and anxiety disorders than individuals of comparable age and sex without arthritis.^{2 10} Depression can undermine motivation for self-care, such as compliance with medications, eating well and exercising.

Individuals with arthritis who have visible symptoms may face further stigmatization that negatively impact on their quality of life. The presence of other chronic conditions also contributes to poorer self- rated health and health status, potentially leading to more severe disability.^{5 11}

Not everyone with arthritis is affected in the same way. The ability to function may diminish over time, depending on the nature and severity of the condition, the type of arthritis, and the number of joints involved.⁵ The major impact of arthritis is on life — often over the course of many years and decades.³

This chapter presents Canadian data on arthritis- related disability and the impact of the disease on quality of life from two national population-based surveys: 2007-2008 Canadian Community Health Survey (CCHS), and the 2001 Participation and Activity Limitations Survey (PALS).

The CCHS provides data on disability as reported by people with arthritis but not necessarily attributed to arthritis specifically. It was used to provide a general overview of how people living with arthritis perceive their physical and mental health, stress, satisfaction with life, pain and activity limitations, and co-existing chronic conditions, compared to those who have no chronic conditions (where appropriate). Figures 3-1 to 3-9 are based on the analysis of the 2007-2008 CCHS data.

The 2001 PALS provides data on arthritis as the main cause of a respondent's disability. It was used to further examine the impact directly attributed to arthritis by the respondents on specific activity limitations and participation restrictions such as mobility, self-care, work, leisure activities and social participation. Figures 3-10 to 3-13 are based on data from the 2001 PALS.

General health

Self-rated health has been shown to be a reliable and valid measure of individual health.¹² The CCHS asked respondents to rate their health on a five- point scale: excellent, good, fair, poor or very poor. Overall, 30.4% of men and 29.1% of women living

Figure 3-1 - Text Equivalent

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arthritis reported their health as fair or poor (Figure 3-1). The proportion of individuals who rated their health as fair or poor was much higher among those living with arthritis than those with no chronic conditions. Men and women with arthritis aged 75 years and older were more likely to report fair to poor health than the other age groups (approximately 37% among 75 years and older versus between 21% and 32% for the other age groups).

The proportion of men and women with arthritis who rated their health as worse than a year earlier was 21.7% and 23.0% respectively (Figure 3-2). The greatest proportion of individuals with arthritis that rated their health worse than a year earlier was within the oldest age group (75+). A statistically significant difference between men and women was shown only among those aged 45–64 years: women with arthritis were more likely than men with arthritis to rate their health as worse than the previous year.

A study looking at the impact of seven chronic conditions in eight countries^* (arthritis, diabetes, allergies, congestive heart failure, chronic lung disease, hypertension and ischemic heart disease) found that arthritis had the greatest impact on health-related quality of life.¹

Figure 3-2 - Text Equivalent

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Psychological/mental health and stress

Many individuals with arthritis not only have to cope with the physical impacts of their condition but have to deal with its effect on their mental health. The overall proportion of men and women with arthritis that perceived their mental health as fair or poor was 9.6% and 8.2% respectively (Figure 3-3). Women less than 44 years of age were as likely as women in the 45-64 age group to report fair or poor mental health and men less than 44 years of age were more likely to report fair or poor mental health than all other age groups.

"I am often depressed as I look at a future of chronic pain and limited activity."

– Person living with osteoarthritis

* Denmark, France, Germany, Italy, Japan, the Netherlands, Norway and the United States.

Figure 3-3 - Text Equivalent

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Overall, a small proportion of individuals with arthritis (5.7% and 6.0% of men and women, respectively) reported being dissatisfied with life (Figure 3-4). However, working age men and women with arthritis were as likely as those aged over 65 years to report being dissatisfied with life. A statistically significant difference between men and women was shown only among those aged 75 years and over: women with arthritis were more likely than men with arthritis to report being dissatisfied with life.

Figure 3-4 - Text Equivalent

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Overall, close to one quarter (22%) of individuals with arthritis reported life to be "quite a bit" or "extremely" stressful compared to approximately one fifth (18%) for those without chronic conditions (Figure 3-5). A higher proportion of women with arthritis of all ages reported life to be "quite a bit" or "extremely" stressful compared to women with no chronic conditions. The same was found for men aged 15-44 years and 65-74 years with arthritis. Men and women with arthritis between 15 and 44 years of age were more likely to find life a bit or extremely stressful compared to the other age groups.

Co-existing chronic conditions

The impact of arthritis on mental health and life appears to be greater in the youngest age group, as shown by the decrease in the proportions of people with arthritis reporting poor mental health and stress after the age of 44 years as well as by the higher proportions of people with arthritis of working age who reported being dissatisfied with life. Arthritis is generally not perceived as a young person's condition and as a result, young people with arthritis may need to make more adjustments to their life and come to terms with a greater sense of lost opportunity than their peers.

Figure 3-5 - Text Equivalent

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Many individuals with arthritis also have to cope with other chronic conditions. The co-existence of other chronic conditions may reduce their mobility and their ability to cope with the challenges posed by arthritis. The six chronic conditions most frequently reported among men with arthritis were back problems (42.5%), high blood pressure (34.7%), heart disease (14.7%), diabetes (14.4%), mood or anxiety disorder (13.3%) and asthma (10.5%) (Figure 3-6). Among women with arthritis, the most frequently reported conditions were back problems (41.6%), high blood pressure (39.1%), mood or anxiety disorder (19.5%), migraines (17.4%), diabetes (13.3%) and heart disease (12.3%). As stated above, arthritis does impact the quality of life of people beyond the physical aspects of the disease; it also impacts their mental health. Mood or anxiety disorders were 1.8 and 1.5 times more common among men and women with arthritis than in the population as a whole.

Figure 3-6 - Text Equivalent

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Pain and activity limitations

"I cannot lift up my small grandchildren any longer. I limp constantly. I'm almost always in pain."

— Person living with osteoarthritis

Arthritis can result in daily suffering and activity limitations. Overall, 34.4% of men and 39.4% of women with arthritis reported having pain that prevented activities (Figure 3-7). People aged 15-44 years were more likely than the other age groups to report having activities prevented by pain, particularly women. Men and women of working age (less than 65 years of age) were also more likely to report activities prevented by pain than those aged over 65 years.

Figure 3-7 - Text Equivalent

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or most activities, by age and sex, household population aged 15 years and Proportion of individuals with arthritis for whom pain prevents a few, some

The CCHS asked respondents to report the number of disability days they had experienced for health-related reasons in the previous two weeks. Disability days are days on which people have to stay in bed all day or otherwise cut down on activities. Issues such as pain can prevent people with arthritis to go about their normal activities such as working.

The proportion of men and women with arthritis that reported disability days in the previous two weeks was greatest among those aged 15-44 years compared to the other age groups (Figure 3-8). Women were more likely than men in all age groups to report disability days. Again, people of working age (less than 65 years) were more likely than those aged 65 and over to report at least one disability day in the past 14 days.

Figure 3-8 - Text Equivalent

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Many individuals with arthritis have to cope with restrictions in their daily activities. The CCHS 2007-2008 asked the following question to respondents in order to assess activity limitations: "Do you have any difficulty hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities?". Over two thirds (67.3%) of individuals with arthritis aged 15 years and over reported activity limitations, a proportion similar to individuals with heart disease (67.6%) (Figure 3-9). A significantly greater proportion of individuals with stroke reported activity limitations (81.4%) compared to those with arthritis. In contrast, a significantly lower proportion of individuals with diabetes and asthma reported activity limitations compared to those with arthritis (56.1% and 45.3%, respectively).

Figure 3-9 - Text Equivalent

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Disability due to arthritis

"I am not sure that anybody can rise right above their disease, but instead you carry it with you, and let it lead you to places and people that otherwise would not be a part of your life. I always told myself that I would never let arthritis stand in the way of what I wanted to do and who I would become. "

— Person living with juvenile rheumatoid arthritis

I am truly looking forward to what the future holds for me. Yes, I do know that I will always have arthritis. But I will never let it define who I am or what I do as a person."

— Person living with juvenile rheumatoid arthritis

Arthritis is a major contributor to disability in Canada. In 2001, approximately one in six (15%) of Canadians reported having a disability in the Participation and Activity Limitation Survey (PALS). Approximately 25% attributed their disability to arthritis, while about 66% attributed it to other physical chronic conditions, and 9% to psychological chronic conditions.

Among the top ten causes of disability, arthritis was the most frequently reported cause of disability among women and second most frequently mentioned condition as a direct cause of disability among men (Figure 3-10).

Figure 3-10 - Text Equivalent

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Top ten causes of disability among men and women aged 15 years and over, Canada, 2001

Overview of activity limitations due to arthritis

Figure 3-11 provides an overview of the activity limitations due to arthritis experienced by respondents in five daily life domains (which are based on the International Classification of Functioning, Disability and Health (ICF)).¹⁶ The five domains are:

• mobility, which is further divided into:
  • moving around;
  • reaching and bending; and
  • transportation;
• self-care;
• domestic life;
• participation in the labour force; and

• community, social and civic life (CSCL).

  As shown in Figure 3-11, arthritis affects many dimensions of every day life for a large proportion of people living with the disease.

Over half of individuals with activity limitations due to arthritis faced difficulty with the following tasks:

• climbing stairs (57.1%);
• standing for 20 minutes (64.8%);
• moving room-to-room or walking ½ km (62.1%);
• reaching, grasping and/or carrying (68.5%);
• bending over and picking up an object from the floor (53.9%);
• use of distance transportation (51.6%);
• cutting toenails (53.7%);
• heavy housework (65.6%);
• household tasks (56.3%);
• leisure activities outside the home less than weekly (72.0%) and;
• exercise/physical activity less than daily (57.1%).

Figure 3-11 - Text Equivalent

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U.S.-based data suggest that people with arthritis find walking and mobility much more challenging than the non-arthritic population.¹⁷ Data presented in this chapter suggest that activities as simple as cutting ones toenails or moving from room-to-room are particularly challenging tasks for respondents with activity limitations due to arthritis. These activity limitations may also vary according to the type of arthritis. Individuals with RA have been shown to be most limited in walking, climbing, gripping and handling.¹⁸ Leisure activities, social activities, close relationships, community mobility, employment and heavy housework are the most frequently mentioned roles affected by osteoarthritis (OA).¹⁹

Activity limitations due to arthritis by sex and age

Mobility

Over 30% of men and women with activity limitations due to arthritis reported difficulty with or used assistance in moving around (Table 3-1). Women had significantly greater difficulty in climbing stairs, standing for twenty minutes, and moving room-to- room or walking than men whereas, similar proportions of women and men reported needing or using assistance in walking. People of working age (aged less than 65 years) had either similar or more difficulties with climbing stairs, standing for 20 minutes and moving room to room or walking compared to those aged over 65 years.

In all age groups, women with arthritis were more likely than men with arthritis to have difficulty reaching, grasping or carrying (68-76% versus 55-64%, respectively) (Table 3-1). They were also more likely than men to report the use of assistance with these tasks (12-26% versus 5-10%, respectively). These limitations due to arthritis were not restricted to the older age groups. Individuals of working age (15-64 years) were equally or more likely than individuals aged 65 years and over to report having difficulty reaching or bending due to their arthritis.

Use of transportation was problematic for young people with disability due to arthritis (Table 3-1). Men and women aged 15-44 years were more likely than the other age groups to report difficulties with transportation. The use of distance transportation was particularly challenging for young people, with close to 60% of them reporting difficulties in this area. Over a quarter of people of working age reported having difficulties traveling locally by car, which could impact their participation in the workforce or in social life. Similar proportions of men and women reported difficulty with the use of different transportation modes.

Table 3-1: Proportion of individuals aged 15 years and over with disability due to arthritis who reported limitations in mobility, by age and sex, Canada, 2001

Activity	Age Group	Men (%)	Women (%)
Source: Arthritis Community Research and Evaluation Unit using data from the Participation and Activity Limitation Survey 2001, Public Use File, Statistics Canada.
Moving around
Move room-to-room or walk ½ km	15-44	50.3	52.7
	45-64	50.6	62.5
	65+	55.4	70.6
Aid or assistance to walk	15-44	33.8	37.2
	45-64	34.1	34.6
	65+	40.7	47.9
Stand for 20 minutes	15-44	54.9	62.0
	45-64	61.5	68.4
	65+	55.7	68.7
Climb stairs	15-44	38.4	47.8
	45-64	53.7	60.5
	65+	48.3	62.5
Moving around Reaching or bending
Bend over/pick object up from floor	15-44	56.3	47.8
	45-64	60.4	57.0
	65+	49.8	52.4
Reach, grasp and/or carry	15-44	63.9	68.3
	45-64	55.5	73.6
	65+	54.6	75.9
Require use of aid to reach, grasp or carry	15-44	9.8	26.4
	45-64	9.0	15.1
	65+	5.0	12.2
Transportation
Use of local transportation	15-44	32.7	38.1
	45-64	31.0	29.1
	65+	15.5	22.5
Travel locally by car	15-44	25.9	28.8
	45-64	29.5	23.1
	65+	10.2	16.4
Use of distance transportation	15-44	59.5	59.9
	45-64	57.5	55.2
	65+	42.8	49.5

Table 3-1 - Text Equivalent

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Self-care

"My life as I knew it before ended. I was dependent on help from my husband, friends and family. Disability began with not being able to rise from the bed, dressing, walking and caring for myself. My role as head of the household ceased."

— Person living with rheumatoid arthritis and osteoarthritis

Overall, similar proportions of men and women reported difficulties with self-care activities (Table 3-2). Over 30% of men and women aged 15-44 years reported needing help to get in and out of bed and getting dressed, which is higher than among those aged 65 years and over (up to 23%).

Table 3-2: Proportion of individuals aged 15 years and over with disability due to arthritis who reported limitations in self-care, by age and sex, Canada, 2001

Activity	Age Group	Men (%)	Women (%)
Source: Arthritis Community Research and Evaluation Unit using data from the Participation and Activity Limitation Survey 2001, Public Use File, Statistics Canada.
Dress/undress	15-44	31.4	26.1
	45-64	28.9	30.3
	65+	19.4	23.1
Cut toenails	15-44	29.9	30.4
	45-64	50.6	50.2
	65+	52.4	62.4
Uses or needs assistance with self-care	15-44	8.4	14.7
	45-64	12.8	10.7
	65+	15.5	21.1
Get in/out bed	15-44	30.7	35.0
	45-64	31.8	31.0
	65+	15.6	18.8

Table 3-2 - Text Equivalent

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Domestic life activities

Men and women, living with arthritis reported facing considerable difficulty in domestic life activities (Figure 3-12). Differences between men and women were evident, as the proportions of women who reported difficulties were up to 1.8 times higher than men.

High proportions of women aged 15-44 years with a disability related to arthritis reported difficulties in domestic life activities: 76% needed help with heavy housework and 62% needed assistance with household tasks. These proportions are similar to those reported by women aged 65 years and over (71% and 69%, respectively).

Figure 3-12 - Text Equivalent

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Participation in the labour force

"I haven't been able to work since the onset of my rheumatoid [arthritis], and that was initially very devastating. I loved my work and to have it snatched away really affected me emotionally."

— Person living with rheumatoid arthritis

Arthritis conditions have a significant impact on work loss and the capacity to do work or gain employment.^{5 8 20 21} Working age individuals may be unable to continue working at the same level as they would have if they had not developed arthritis, while others may need to adapt through workplace modifications.^{5 6 22} Some workers may need to reduce the number of hours worked; others may be unable to work outside of the home; and others may need to change jobs.^{5 8}

Figure 3-13 presents the proportion of people with activity limitations due to arthritis who are not in the labour force, who required job modifications, and have job limitations.

Many men and women with arthritis are still in the labour force however, 44% are working with job limitations and 33% required job modifications. Over 70% of those aged between 55-64 years reported not being in the labour force. Of concern is the proportion of young people with arthritis who report not being in the labour force. On average, over a quarter of men and women aged between 25 and 44 years with arthritis are not in the labour force because of their arthritis.

The data presented in this chapter do not capture loss of productivity, absenteeism, or the impact on the economic situation of the individuals and their family. Co-existing conditions such as mental illness or other physical conditions may also impact the ability of people living with arthritis to participate in the labour force.

Figure 3-13 - Text Equivalent

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Community, social and civic life (CSCL)

"When a person spends most of his time looking for places to sit down, he doesn't tend to be an avid sportsman. As a young person, I was very active physically and with the arthritis taking a firm hold in my 20s, I believe, I became much more oriented to intellectual pursuits—and thus was the first one of my family to attend university. My children later in life realized that I did not play and horse around with them to quite the extent that other fathers played with their children. Needless to say, our family did not make racing down the alpine slopes a family recreation. All in all, however, we were still an active family with summer trips on an annual basis to Victoria in the early years of my teaching career."

— Person living with non-specific polyarthritis

Participating in community, social and civic life can be challenging for many individuals with arthritis. Over 50% of those with activity limitations due to arthritis reported difficulties in participating in physical activities and in out-of-home leisure activities (Table 3-3). Over 65% of men and women aged 15-44 years reported a limitation in their participation in weekly leisure activities outside the home and up to 63% reported difficulties doing daily exercise or physical activity. The same pattern was observed among those aged 45-64 years of age.

Previous research has found that people with arthritis were more likely to report limitations in the amount of physical activity/exercise they could perform than those without arthritis.²³ This is cause for concern, since physical activity has been shown to be important in decreasing the degree of activity and participation limitations among individuals with arthritis.^{24 25} Carrying out recommended levels of exercise has been associated with better quality of life and fewer physically and mentally unhealthy days.²⁶ These findings underline the importance of efforts to promote appropriate and adapted physical activity and exercise among people with arthritis, particularly in the younger age group and the working age population.

Table 3-3: Proportion of individuals aged 15 years and over with disability due to arthritis who reported limitations in participating in community, social and civic life, by age and sex, Canada, 2001

Activity	Age Group	Men (%)	Women (%)
Source: Arthritis Community Research and Evaluation Unit using data from the Participation and Activity Limitation Survey 2001, Public Use File, Statistics Canada. * Exercise, stay in touch by email with family or friends, participate in electronic news groups or chat groups, surf the internet for information or e-commerce, do arts, crafts or hobbies, watch TV or videos, listen to the radio or CDs, read, talk on the telephone with family or friends.
Less than daily exercise or physical activity	15-44	63.0	59.3
	45-64	61.3	62.0
	65+	48.6	55.7
Less than daily in-home leisure activities*	15-44	32.4	22.8
	45-64	29.6	24.9
	65+	28.1	28.9
Less than weekly leisure activities outside the home	15-44	69.5	65.9
	45-64	73.2	73.7
	65+	74.9	70.5

Table 3-3 - Text Equivalent

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"I am scared sometimes for what the future holds. How will my husband cope when I can't do the things I do now? Will the meds stop working? What happens when my RA specialist retires, will I be able to find someone else? etc., etc."

– Person living with rheumatoid arthritis

Summary

• Arthritis seriously impacts the life of Canadians who live with the many forms of the condition. Individuals with arthritis not only have to live with the impairments, activity limitations and participation restrictions caused by their arthritis but also have to cope with other chronic conditions related to their arthritis including mental health problems and heart disease.
• Close to one third of individuals with arthritis reported their general health as fair or poor and the proportion of individuals with this general health standing increased with age. Up to one quarter of people with arthritis rated their health worse than a year earlier. Men and women with arthritis aged 75 years and older were more likely to report fair to poor health than the other age groups.
• Close to one tenth of individuals with arthritis perceived their mental health as fair or poor and close to one quarter reported life to be "quite a bit" or "extremely stressful". Overall, those aged 15-44 years of age were more likely to report poor mental health and a stressful life.
• The six chronic conditions most frequently reported among men with arthritis were back problems, high blood pressure, heart disease, diabetes, mood or anxiety disorder and asthma. Among women with arthritis, the most frequently reported conditions were back problems, high blood pressure, mood or anxiety disorder, migraines, diabetes and heart disease.
• Over a third of individuals with arthritis reported to have activities prevented by pain and the greatest proportions were observed in the youngest age group (15-44 years). Men and women of working age (less than 65 years of age) were also more likely to report activities prevented by pain than those aged over 65 years.
• Women with arthritis were more likely than men with arthritis to report disability days for health- related reasons. The greatest proportions were reported in the youngest age group (39% and 32% of women and men, respectively).
• The proportion of individuals with arthritis 15 years and over who reported activity limitations was similar to that of individuals with heart disease (67% and 68%).
• Arthritis was the second most frequently mentioned condition as a cause of disability among men and the first among women.
• Women were more likely to experience activity limitations due to arthritis compared to men. The proportions were higher in women of all age groups with the greatest difference observed between the ages of 55 and 74 years.
• Arthritis related disability includes limitations in mobility (i.e. moving around, reaching and bending and transportation), self-care, domestic life, major life areas, and community, social and civic life.
• Women with arthritis had significantly greater difficulty than men with climbing stairs, standing for twenty minutes, moving room-to-room or walking ½ km, reaching, grasping or carrying, and with domestic life activities.
• People of working age with arthritis had either similar or more difficulties with mobility activities, such as climbing stairs, standing for 20 minutes, reaching and bending, getting in and out of bed, getting dressed than the oldest age group with arthritis.
• Young women (15-44 years) with arthritis reported similar or greater difficulties with heavy housework and needing assistance with household tasks than those reported by women aged 65 years and over with arthritis.
• Use of transportation was also problematic for young people (15-44 years) with arthritis, particularly the use of distance transportation, with over 60% reporting difficulties in this area. Over a quarter of people of working-age reported having difficulties travelling locally by car.
• On average, one quarter of men and women with arthritis between the ages of 25 and 44 years were not in the labour force because of their arthritis.
• Over 65% of young people (15-44 years) with arthritis reported difficulties in participating in weekly leisure activities outside the home and up to 63% reported difficulties doing daily exercise or physical activity. A similar pattern was observed in those aged 45-64 years.

 

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