Victoria Rizzo, PhD—Assistant Professor, Columbia University School of Social Work
Although chronic illnesses in older adults have predictable psychological and social impacts, the specific characteristics of any disease influence the adaptive challenge it presents. To be effective, social work roles, interventions, and service delivery models need to be designed and developed to take account of the particular characteristics of the illness and its affect on patients, families, and communities. Such defining characteristics for the biopsychosocial assessment and interventions include, for example:
Presented here is the example of osteoarthritis: a disease that has a high prevalence in older adults; is the most common type of arthritis; is the leading physical illness cause of functional disability; often leads to depression in affected individuals as a result of common symptoms, such as pain and limited mobility; and only recently has been viewed as a public health issue among older adults that requires treatment, mainly through the use of disease management programs. The use of care coordination models with older adults with osteoarthritis has recently been identified as a complement to osteoarthritis disease management programs that have been endorsed by the Centers for Disease Control (CDC). Despite the evidence base for effectiveness of these disease management programs and their availability nationwide due to CDC support, many frail older adults are not utilizing them. Care coordination models can be used to address some of the modifiable barriers to program participation as well as safe and maximal independence necessary to age in place. Care coordination models for older adults with osteoarthritis should include health care system and social service systems navigation to improve access to, and continuity of, care and services and patient and caregiver support/education.
Furthermore, arthritis is the leading self-reported disability caused by a chronic illness: 19 million adults reported limited activity because of the disease in 2002 (Centers for Disease Control [CDC], 2008a). Arthritis is estimated to cost $81 billion a year and is responsible for 750,000 hospitalizations and 36 million outpatient physician visits each year (CDC, 2008a). More than half of all adults diagnosed with diabetes or heart disease also have some form of arthritis (CDC, 2007a). Overall projections concerning the prevalence of arthritis are presented in Figure 1.
The most commonly affected joints include the knees, hips, and hands (Lawrence et al., 2008). Lawrence and colleagues report that estimating the prevalence of osteoarthritis is difficult because the physical changes associated with the disease occur as a person ages, but many times no symptoms are associated with these changes. A diagnosis of symptomatic osteoarthritis requires that a person must have reported frequent pain in a joint, and there must be radiographic evidence of osteoarthritis in that joint. Most surveys of prevalence require individuals to have reported pain in the joint for a significant number of days (more than half) in one month to meet the symptomatic definition of the disease (Lawrence et al., 2008). Approximately 26.9 million people aged 25 and older are currently diagnosed with it. By 2030, 72 million people (20% of the U.S. population) will have reached age 65 and will thus be at increased risk for the disease (National Institute of Arthritis and Musculoskeletal and Skin Diseases, 2006). Figure 2 shows the projected prevalence rates.
By 2030, shifting demographics will result in a tripling of the population of adults 65 years of age or older (1 in 5 Americans, or 72 million). Furthermore, staggering increases in the prevalence of obesity, from 15% in 1980 to 33% in 2004, have the potential to significantly increase the number of older people reporting doctor-diagnosed osteoarthritis. Older age and obesity are both correlated with a higher prevalence of the disease. Freedman and colleagues (2007) reported that the number of cases nationally will increase by 16% between 2005 and 2030, with 14 states projecting that cases of doctor-diagnosed cases will increase from 30% to 87% by 2030. See Table 1 for state-by-state projections (CDC, 2005).
Given that the current evidence-based exercise and disease management programs endorsed for osteoarthritis by the CDC are underused nationwide (only 11% of those diagnosed have participated) and that the disease is the leading physical cause of functional impairment in activities of daily living (ADLs), extending the reach of these program into communities will become increasingly important. Furthermore, it will become increasingly important to develop new interventions that address the broad range of biopsychosocial difficulties people with the disease experience (Freedman et al., 2007).
Osteoarthritis limits a person’s ability to perform the ADLs, work, and leisure. Furthermore, common symptoms, such as pain and limited mobility, are likely to be related to depression, which has an additive impact on disability and quality of life in chronic illnesses, including arthritis (Stein, Cox, Affix, Belk, & Sateen, 2006; Vail & Walkup, 1998). As Figure 3 illustrates, women of all ages are disproportionately affected by arthritis compared to men (CDC, 2008a).
In 2006, women aged 85 and older accounted for 60% of all doctor-diagnosed arthritis reported. Not surprisingly, the figure for men peaks at approximately 47% between the ages 75 and 84 because of the difference in average life expectancy. The oldest old women report greater activity and work limitations, psychological distress, and severe joint pain than their male counterparts do (Theist, Helmick, & Hootman, 2007). Women also have higher rates of the disease than men do, especially after age 50, and the incidence of knee and hip involvement is most common among women. Replacement of the hip and knee joints also are the most costly treatments. Although older Black patients and people with low incomes have fewer surgeries, they have many more complications and a higher risk of mortality than White patients do.
The fact that the impact of osteoarthritis increases with age is attributable to both modifiable and nonmodifiable risk factors. Modifiable risk factors include excess body mass, joint injury, occupation, and muscle weakness, whereas nonmodifiable risk factors include genetic predisposition, older age, gender, and race (Asians are at lowest risk) (CDC, 2008b).
The years 2002 to 2011 have been declared the United States (and International) Bone and Joint Decade (USBJD). As part of the worldwide Bone and Joint Decade initiative, U.S. patient and physician healthcare organizations, government agencies, and industry have come together as the USBJD to improve prevention programs for bone and joint diseases as well as to improve the quality of life of patients, and this begins with increased awareness, solid information, and increased research. The USBJD’s activities include providing leadership and support for increased prevention, improved treatment, research, and education for all diseases affecting the joints and bones, including osteoarthritis. The ultimate goal of this effort is to improve the quality of life for individuals with bone and joint diseases worldwide (USBJD, 2002).
In response to this designation, the National Arthritis Action Plan (Arthritis Foundation, Association of State and Territorial Health Officials, CDC, 1999) and Healthy People 2010 (DHHS, 2000) have identified arthritis as a major public health issue that can be addressed using prevention, education, and research strategies. According to these sources, existing disease management programs that have been empirically tested are effective means of increasing people’s knowledge about arthritis and increasing their self-efficacy in managing the disease, while reducing their symptoms, such as pain and stiffness, depression, and social isolation. The ultimate purpose of these programs is to maximize the community-dwelling person’s ability to remain independent and enjoy a satisfactory quality of life.
The CDC recommends several evidence-based disease management programs that have empirically demonstrated their ability to improve the quality of life for people diagnosed with the condition. Using intervention screening criteria developed specifically to identify appropriate programs, the CDC (2007c) currently recommends two self-management education programs (The Arthritis Foundation Self-Help Program and the Chronic Disease Self-Management Program), three physical activity programs (Active Living Everyday, Arthritis Foundation Aquatics Program, and EnhanceFitness®), and two health communications programs that promote physical activity (Physical Activity: The Arthritis Pain Reliever and Buenos Dias, Artritis).
The CDC also has three physical activity programs on its “watch list,” meaning that those programs are likely to be recommended, and two self-management programs and two physical activity programs on its “promising practices” list, meaning that preliminary findings from their evaluations are promising (CDC, 2007d). The CDC, in partnership with the National Arthritis Foundation and its state-level chapters, are collaborating to increase the capacity to deliver disease management programs throughout the country. Currently, 36 states receive funding to deliver disease management programs to people with all forms of arthritis.
The Arthritis Foundation Self-help Program (adopted in 1981) is an educational program offered in a group setting to teach people different techniques to manage their arthritis and take a more active part in their own care. The course is generally taught over 6 consecutive weeks in sessions lasting 2 hours each. It is taught by a trained instructor using instructional techniques, such as active participation, lecture, discussion, brainstorming, and role playing. The topics covered include self-help principles, the disease process, exercise and fitness, pain management, relaxation, anger, fear and frustration, nutrition, problem-solving, communication skills, doctor-patient relations, medication, and nontraditional treatments. The program’s impact on clients is determined by the following outcome measures: daily activity level, changes in symptoms, knowledge about arthritis, self-efficacy, depression, and client satisfaction. Rigorous evaluations have demonstrated the positive effects of participating in the program. Four years after the program, 20% of the participants reported decreased pain and 40% reported fewer visits to their physician. Capacity-building efforts in individual states have had similar outcomes when this evidence-based intervention has been translated into practice in community-based settings (Rizzo, Smith, Levine, & Greco, 2007).
In an effort to increase participation, the National Arthritis Plan (1999) recommended the development and implementation of community-wide strategies, including public awareness campaigns and marketing, to increase the penetration and reach of these programs in the community. State-level efforts have demonstrated some success with these strategies. For example, a disease management capacity-building initiative implemented by the New York State chapters of the Arthritis Foundation has resulted in the training of 634 new course instructors, the delivery of 354 new disease management courses statewide, and the participation of more than 6,000 clients with arthritis in disease management courses over 3 years throughout the state (Rizzo, et al., 2007).
As stated earlier in this module, many people with doctor-diagnosed osteoarthritis are managing other diseases, such as heart disease and diabetes. However, two co-morbidities (pain and depression) require special attention because of their interrelatedness in osteoarthritis and their negative impact on functional limitations and quality of life.
Pain is common, and its intensity increases with age and duration of the disease. In their review of the literature, Jakobsson and Halberg (2002) concluded that increased pain caused by the disease can lead to increased depression. Furthermore, they reported that social support can buffer against the negative effects of the pain on quality-of-life outcomes, including depression.
Analyses of 1996 Health and Retirement Survey data revealed a significant association (an attributable risk of 18%) between arthritis and major depression, likely the result of functional limitations related to progression of the disease (CDC, 2004). Zautra and Smith (2001) suggested that depressive symptoms are likely to be related to weekly elevations in the degree of pain. When Lin and colleagues (2003) examined the impact of depression management on the pain and functional outcomes among older adults diagnosed with arthritis, they found that, compared with counterparts who received standard care, the people who received antidepressants or six to eight sessions of psychotherapy or both experienced significant decreases in the intensity of pain, in interference with ADLs caused by progression of disease, and in interference with ADLs resulting from pain.
Despite the fact that the interrelatedness of pain, limited ADLs, and depression associated with osteoarthritis is well established, primary care physicians often fail to include an assessment of ADL limitations, depression, or anxiety when examining their osteoarthritis patients (Memel, Kirwan, Sharp, & Hehir, 2000). One critical role for social workers is to include assessments of these factors when working with older adults diagnosed with the disease and addressing them with empirically tested interventions, including antidepressants, psychotherapy, disease management programs, and training in pain coping skills (Keefe et al., 2002).
Statewide efforts funded by the CDC and state-level departments of health have demonstrated some success with increasing the numbers of people with arthritis who participate in disease management programs. Despite these successful efforts, however, only 1% of the arthritis population in New York State participates in these programs. Furthermore, the vast majority of participants are non-Hispanic Whites, who have some college education, some form of medical insurance, and minimal impairment of ADLs, which suggests disparities in the recruitment, enrollment, and retention of people at high risk: e.g., people of color, those who are less educated, and those with more impairment in the ADLs (Rizzo et al., 2007).
Qualitative studies that examine the barriers to use of health services that influence participation in disease management programs for osteoarthritis (exercise-based programs) are extremely limited in the available literature. Of the three identified studies (Der Ananian, Wilcox, Saunders, Watkins, & Evans, 2006; Kamwendo, Askenbom, & Wahlgren, 1999; Lambert et al., 2000), only Der Ananian and colleagues (2006) examined the barriers to participation in disease management programs. In their study of 46 individuals with various types of arthritis, they found that three categories of individual barriers influenced participation in exercise programs are (1) physical (pain, mobility, co-morbidity, arthritis-related illness, and fatigue), (2) psychological (attitudes/beliefs, perceived negative outcomes, and depression), and (3) social/environmental (insufficient advice from physicians regarding the benefits of exercise, competing roles/responsibilities, lack of available exercise programs, lack of transportation, and weather. (Der Ananian et al., 2006; Schoster et al., 2005).
Studies of patient satisfaction with disease management programs suggest that people with osteoarthritis have needs that are not being addressed by these programs. For example, Holman and Lorig (2004) identified the primary determinants of health that participants in such programs want addressed to self-manage their arthritis: (1) access to information about the diagnosis and its implications and available treatments, (2) continuity of care, (3) coordination of care, (4) strategies for coping with symptoms, such as pain, fatigue, and loss of independence, and (5) ways to adjust to consequences of the disease, such as fear, depression, and uncertainty. Although most programs include cursory mention of items 1, 4, and 5, few, if any, address items 2 and 3.
These studies suggest that disease management programs alone are not the answer to the prevention and management of increased symptoms of osteoarthritis. First, because they are not reaching a majority of the most vulnerable people who have the disease, including, but not limited to, people of color, those with increased limitations in ADLs, and those with lower levels of education. And second, because they do not meet all the identified needs of people with osteoarthritis. One promising intervention that addresses both difficulties is social work care coordination.
The Institute of Medicine (IOM) has identified care coordination as one strategy to improve the quality of care for Americans with chronic and advanced illnesses along six dimensions of care: safety, effectiveness, patient centeredness, timeliness, equity, and efficiency. A recent review of Medicare demonstration projects on care coordination identified the following key gaps in current research: (1) lack of a uniform definition of care coordination and a conceptual model, (2) poorly defined care coordination interventions, (3) little focus on management of advanced and terminal illness (only 1 of 20 interventions), and (4) an underdeveloped measurement field for care coordination (Brown et al., 2007). These gaps have made it difficult for investigators to evaluate the effectiveness and efficiency of care coordination models to address the complex care that people with chronic illnesses need.
(Note: Care coordination is defined as “the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities, and is often managed by the exchange of information among participants responsible for different aspects of care” (Owens, 2007, p. 18).)
In 2007, the Agency for Health Care Research and Quality (Owens, 2007) released a meta-analysis of evaluations of care coordination programs, which concluded that the effectiveness of these programs is likely to depend on matching the program with the care coordination problem (i.e., management of osteoarthritis). Therefore, the development of an effective care coordination program for community-dwelling individuals with osteoarthritis would need to begin with a clear understanding of the characteristics of this population that inhibit their ability to manage the disease effectively through beneficial personal health practices and such health services as disease management programs.
Both physical and psychological problems are highlighted for individuals with osteoarthritis because of symptoms of pain, limited mobility, and decreased ability to perform activities of daily living as the disease progresses. As the disease progresses and individuals become more disabled, they may become clinically depressed and unable to care for themselves in their home environments. At later stages of the disease, social support networks and family members often need to be engaged to support the client both physically and emotionally.
Table 2, which is adapted from Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (Committee on the Psychosocial Services to cancer patients/Families in a Community Setting, Institute of Medicine, 2007), describes seven domains of biopsychosocial health needs assessed by social workers and the biopsychosocial health services they have implemented to meet those needs. The table has been modified to include the needs and services unique to osteoarthritis as a chronic illness.
The current literature focused on prevention and treatment of osteoarthritis has not identified a clear role for social workers. Disease management programs, regarded as the gold standard of care for prevention and management of the disease, are often implemented by lay people with arthritis or by paraprofessionals or professionals trained in the medical model (health educators, physical therapists, physical therapy assistants, nurses, public health workers, and nutritionists). One role for social workers in treating affected individuals is to become instructors of disease management programs endorsed by the CDC and the National Arthritis Foundation (see description above on pp 6-7).
However, disease management programs fail to address many of the biopsychosocial issues identified by individuals diagnosed with osteoarthritis as negatively impacting their ability to remain in the community with maximum physical function and quality of life. These include (1) access to information concerning diagnosis and its implications and available treatments; (2) continuity of care, (3) coordination of care, (4) strategies for coping with symptoms, such as pain, fatigue and loss of independence, and (5) ways to adjust to consequences of the disease, such as fear, depression, and uncertainty (Der Ananian et al., 2006). In addition, some evidence indicates that the available disease management programs are not successful at recruiting the populations that could benefit the most from them (Rizzo et al., 2006, 2007). Three categories of individual barriers that influence participation in exercise programs are (1) physical (pain, mobility, co-morbidity, arthritis-related illness, and fatigue), (2) psychological (attitudes/beliefs, perceived negative outcomes, and depression), and (3) social/environmental (insufficient advice from physicians regarding the benefits of exercise, competing roles/responsibilities, lack of available exercise programs, lack of transportation, and weather. (Der Ananian et al., 2006; Schoster et al., 2005).
Therefore, it is important for social workers to identify the primary determinants of health behaviors that inhibit patients’ participation in disease management programs and other positive health practices for management and to use the findings to develop a social work care coordination model that can more fully address all the biopsychosocial needs of patients. By virtue of their professional training, social workers are well positioned to assist clients who have needs in the areas identified above. Four specific ways social workers can address some of these needs include the following:
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