PARKINSON S DISEASE (PD) is a chronic

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1 Topics in Geriatric Rehabilitation Vol. 24, No. 1, pp Copyright c 2008 Wolters Kluwer Health Lippincott Williams & Wilkins Treating Parkinson s Disease The Impact of Different Care Models on Quality of Life Monique L. Giroux, MD; Sierra Farris, PA-C Parkinson s disease is a progressive neurologic disorder that impacts critical domains of daily living. Movement, autonomic, cognitive, and behavioral problems can significantly impair quality of life. In addition, medical treatment is complex and its progressive course requires long-term care. Given this, it represents a model disease to study with reference to healthcare strategies aimed at improving quality of life for chronic debilitating illness in our aging society. This article will examine the evolution of care for PD, beginning with the medical model, followed by a rehabilitation model. Finally, a patient-centered approach is presented that explores concepts of wellness in the setting of illness, and individualizes personal management rather than primary symptom treatment. This divergence from disease-centered to patient-centered care allows this approach to be generalized to the care needs of society s aging population that live with functional disability or chronic illness. Key words: chronic illness, disability, Parkinson s disease, quality of life, wellness PARKINSON S DISEASE (PD) is a chronic progressive neurodegenerative disorder that affects an estimated 1% of individuals older than 60 years and 2% older than It is estimated that more than 1.5 million people in the United States suffer from PD. The primary features include rest tremor, rigidity, bradykinesia, and postural instability. 2 Taken together, these motor signs cause a generalized slowness, difficulty in dexterity or fine motor control, and a decrease in movements such as spontaneous body gestures or facial expression. Over time motor problems progress to cause significant gait, postural flexion, imbalance, speech, and swallowing problems. Given the obvious motor features of PD, it is easy to overlook the many nonmotor symp- From the Booth Gardner Parkinson s Care Center at Evergreen Hospital Medical Center, Kirkland, Wash. Corresponding author: Monique L. Giroux, MD, Booth Gardner Parkinson s Care Center at Evergreen Hospital Medical Center, st Way, Suite 203, Kirkland, WA ( mgiroux@evergreenhealthcare.org). toms associated with this disease. Indeed, nonmotor symptoms are a primary complaint and for some individuals cause a greater degree of disability than motor symptoms. 3,4 Up to 60% of patients suffer from more than one nonmotor symptom. 5 including autonomic dysfunction, sensory symptoms, and cognitive and behavioral problems. 6 The treatment of both motor and nonmotor symptoms significantly increases the complexity of care for these individuals. Added to this challenge are the unique issues associated with both aging and treatment of a progressive disease. These factors have not only influenced our treatment but led to an evolution and reshaping of our care models as well. Figure 1 illustrates the key components of these models and describes how they are evolving to enhance quality of life (QOL) and quality care. In reality, clear distinctions between these models do not exist and treatment is often a blend of these models. Nonetheless, a review of these models allows us to explore how experiences and values shape and influence care delivery and our own individual care of patients while highlighting opportunities for further growth. 83

2 GIROUX and FARRIS Medical Model Goal- Diagnosis, Symptom Treatment Strategy- Reactive Focus- Disease and Disability Emerging Themes-Nonmotor Symptoms and QOL Rehabilitation Team Model Goal- Reduce or Adapt to Function Strategy- Reactive Focus- Function and Disability Emerging Themes- Patient preference, Prospective treatment, QOL Comprehensive Chronic Care Model Goal- Enhance QOL, Wellness Strategy- Prospective Focus- Person-Centered Self Management Emerging Themes- Health in the setting of illness Figure 1. Parkinson s disease care models. Although each model is defined as a separate entity, effective care requires an interactive or combined model. MEDICAL MODEL In general, the goal of the medical model and medical therapy is to reduce the motor symptoms of PD. In this model, treatment, education, and counseling are all diseasecentered, addressing motor symptoms as they occur. This is a retroactive approach, with little emphasis on future changes expected in a progressive disease such as PD. A proactive or preventative approach, with strategies to prepare for or modify disability, does not play a critical role. In this model, the emphasis placed on treating these motor symptoms, defined by both the disease and response to pharmacologic therapy, overshadows other less quantifiable but significant problems. Only recently has PD medical care focused on the importance of additional factors that contribute to QOL. More recent studies evaluating the impact of nonmotor symptoms in PD highlight their role on QOL stressing the need for a more comprehensive approach to care. For example, depression and apathy are common in PD and these symptoms have an even greater impact on health for an individual when loss of (or fear of loss) function occurs. Studies of older adults stress the critical role that functional independence, positive attitude, personal growth, and self-care management have on attainment of health and wellness. 7 The presence of depression or apathy directly affects these factors and, therefore, has direct effects on health. For instance, attainment of wellness becomes even more difficult for the depressed PD patient whose engagement in the self-care and disease management process is affected. It is not surprising, then, that depression is a primary contributor to impaired QOL, regardless of the degree of motor impairment. 8 A comprehensive care approach would explore how the symptoms of disease impact daily living and one s self-care. In summary, limitations of pharmacologic therapy are shifting the medical model from one that emphasizes reactive care of disease symptoms to one that incorporates a more comprehensive assessment of disease impact beyond physical and easily quantifiable motor symptoms. Collectively, our awareness of the nonmotor problems in PD brings to the forefront the importance of QOL. Motor symptom 84 TOPICS IN GERIATRIC REHABILITATION

3 TREATING PARKINSON S DISEASE management alone is no longer enough. 8 Hence, our attention now shifts to a more comprehensive care approach that is not just limited to medication responsive motor symptoms but includes factors that diminish QOL and the addition of nonmedical therapies as indicated to optimize QOL. This shift has led to further growth in care beyond the nursephysician team, that is, inclusion of multidisciplinary teams exemplified in the rehabilitation model described below. REHABILITATION MODEL Given the physical disability associated with PD, it is not surprising that rehabilitation therapists are integral members of the treatment team. The limited involvement of rehabilitation specialists in PD until recently, however, is surprising. The full impact of rehabilitation throughout disease stages may be underappreciated. Rehabilitation is often initiated only in the advanced stage of PD. 9 The patient and the family are often the ones seeking this treatment; as was reaffirmed in a UK survey that showed that almost one third of referrals for PT were patient or family initiated. 10 Underutilization of rehabilitation therapy may be influenced by beliefs embedded in the medical model that physical therapy does not help the disease itself and benefits if any are only temporary. There is, however, evidence to support the role of conventional rehabilitation therapies such as physical therapy, occupational therapy, and speech therapy for individuals with PD. Traditional use of these therapies highlights the treatment of motor symptoms, function, and activities of daily living. This approach is more commonly exemplified by an acute therapeutic intervention defined to reduce or eliminate a symptom of disease and its functional consequences. Similar to the medical model described above, rehabilitation is more commonly a reactive model with the goal to improve, adapt, or reinstate the functional consequences of an acute event, such as a stroke. A review of rehabilitation treatment outcomes for PD further highlights how rehabilitation therapies are currently utilized for PD. Gage and Storey reviewed 41 studies evaluating the effectiveness of rehabilitation therapies on PD. 11 Favorable outcomes were noted with the vast majority using standard measures of motor function (or disease) such as the Unified Parkinson Disease Rating Scale, strength, gait mechanics, posture, balance, speech parameters, and ADL assessments. However, significant improvement in functional outcomes did not necessarily improve QOL. 12 This highlights the need for studies to address how meaningful outcomes are to the patient if treatment recommendations are indeed incorporated into the individual s personal home care after discharge. The success of therapy, then, hinges on how the outcome influences or adds meaning to a person s life. Functional independence is potentially more meaningful to people with PD, since loss of function is inherent as the disease progresses. Miller and Iris 7 highlight the difference between function and functional independence with independence defined as the ability to carry out activities within the limitations of disease. In other words, our own social values or biases define functional dependence as any deviation from normal but functional independence implies successful adaptation to the problem. For example, the need for a wheelchair can be viewed as treatment failure if viewed along the lines of physical function. 7 However, the appropriate timing, selection, and use of a walker or wheelchair is a successful and meaningful treatment if it is associated with an increase in functional independence that enhances one s interaction with their psychosocial or physical environment through increased mobility. This concept is not new to the field of neurorehabilitation but this discussion is just emerging in the field of movement disorders and other progressive neurologic illness (as is the acceptance and use of rehabilitation therapies in these areas still driven by the medical model). Perhaps this is due to the early and successful treatment of motor symptoms VOL. 24, NO. 1/JANUARY MARCH

4 GIROUX and FARRIS in PD that reinforced function over functional independence. Very few studies have specifically assessed the effect of rehabilitation on functional independence, QOL, or psychological wellbeing. This is changing especially through inclusion of treatment traditionally offered by other disciplines and interdisciplinary teams. For instance, motor function is improved when behavioral strategies to enhance individual or caregiver well-being are added to therapy 13,14 and functional independence can be optimized by the addition of multiple disciplines A transdisciplinary approach brings a diversity of experience, expertise, and creativity to therapy that is likely to pinpoint the specific factors that are impacting an individual s overall QOL. In summary, traditional rehabilitation therapy addresses QOL indirectly with a focus on function as a result of current disease symptoms. The World Health Organization emphasizes a broader view of disability and health to include the impact of personal and environmental factors (positive and negative) on disability and function. 18 To date, studies evaluating the effect of human factors such as one s sense of wellness or burden, coping, adaptation, or prevention are limited. This can be addressed through integration of behavioral strategies that incorporates more of a person s emotional, spiritual, social, and environmental influences on functional independence, highlighting their importance in disability treatment. Rehabilitation therapy, then, can take a proactive approach to treat the patient s current symptoms while incorporating behavioral strategies to influence future functional loss. With this focus on current and future problems, rehabilitation therapy is appropriate from the earliest to the most advanced stages of disease. COMPREHENSIVE CHRONIC CARE MODEL A comprehensive chronic care model builds on our current medical and rehabilitation models by introducing the concept of person-centered chronic care. A personcentered focus, simply defined, focuses on the perceived needs and preferences of the individual. 19 In addition, it must include focused health management strategies aligned with living well with a chronic illness. 20 Thus, there is an evolution in our focus of care from disease, to function, and now to the person living with a chronic illness. This model adds 2 dimensions to treatment: (1) wellness and (2) patient-active disease management. Wellness Optimally treating an individual with PD requires a shift in perspective. This shift is from a static and reactive treatment of disease to a dynamic model in which the perspectives of wellness and illness play shifting roles in one s life. 21 Given this definition, once the label of disease is applied, the person with a chronic illness may be less able to attain health or wellness. 22 Optimizing wellness in a progressive illness such as PD challenges our current bias that disease obscures health. Because there is no cure for PD, functional abilities decline over time despite best medical treatment. If we use the definition of disease as absence of health, a person with PD cannot attain a sense of good health. At the individual level, the definition of wellness may indeed have different meanings for different individuals. Bishop et al 23 summarize 3 important dimensions to wellness that could be applied to progressive disease: a sense of balance in one s life, a fluid continuum of states from illness to wellness, and the active pursuit toward wellness. If viewed with these concepts in mind, wellness and disease state or function are not mutually exclusive; that is, it is possible to experience wellness even with advanced disease. Health and disease can be viewed along a continuum with varying degrees of health that can occur even in different PD stages. This can be achieved through a focus on control, active participation, hope, creativity, emotional health, spiritual growth, and relationships. 86 TOPICS IN GERIATRIC REHABILITATION

5 TREATING PARKINSON S DISEASE Quality of life improves with enhanced wellness, and this progression toward wellness requires action by the person. In other words, the inclusion of the concepts of active management and functional independence (even in the setting of functional decline) broadens our definition of QOL. Quality-oflife scales such as the Parkinson s Disease Questionnaire 39 (PDQ39) assess problems in areas such as physical, emotional, and social function. 24 An index score combines the scores from 8 domains. 25 This and similar scales 26,27 are valuable instruments designed to measure patient QOL. However, they are static measures of symptom or disability state and do not include measures of action toward a state of wellness. A decline in motor function would automatically result in poorer QOL rating even if functional aids, change in personal relationships, and adaptation allowed improved life adaptation and participation. A fluid QOL rating scale is required if we think of wellness as a dynamic continuum with shifts between disease and wellness as various levels of self-loss, denial, acceptance, and adaptation are experienced. Wellness for a person with advanced motor disability may require different weighting of domains to reflect the value a person puts on a specific state 28,29 ; that is, psychological health, social interaction, cognition, or spirituality could be more important to QOL than physical dimensions. A similar bias could be present for a person with early and mild physical signs perhaps explaining why medical clinicians do not refer to rehabilitation specialists at this stage. This subtle difference is very important as we consider comprehensive care of a chronic progressive disease, such as PD, whose major symptoms respond less to conventional treatment over time. Our focus in this case is to positively influence domains identified as the most important for that individual s sense of wellness. As noted above, our working definition of wellness also includes the active pursuit of wellness. This can be as straightforward as adding lifestyle changes such as diet, exercise, sleep, and stress management. It also includes health and personal care management. Active person-centered management is an integral part of the chronic illness model designed to enhance patient outcomes with chronic disease. Patient active disease management PD as a progressive disease requires a dynamic approach to care. This was discussed in the wellness section with the concept of disease and wellness along a continuum that may shift in both directions over time as disease progresses and adaptation to functional disability changes. A comprehensive chronic illness model 20 would ideally embrace this shift by including issues of personal preference as a necessary starting point for patientdriven, goal-directed care. These preferences, of course, may change over time and with disease as noted in the prior discussion on QOL. Real-life effectiveness of therapy must also include an assessment of the very process of the intervention itself especially if it is to be carried through in the home-world environment. This is as important as treatment since quality and effectiveness are jeopardized if adherence is low. Despite this, strategies that improve and/or boundaries that impede longterm implementation are rarely discussed. Examples of such factors include the role that an individual s belief system, culture, perceived needs, and preferences have on buyin and the ability to maintain and adhere to treatment. Emphasis on the person s level of support, resources, coping, disease state, comorbid medical illness, or life stressors should help guide duration and type of therapy. Active follow-through and pursuit of wellness are possible when treatment includes realistic goals, patient-defined problem solution, and participation, with individual preference in mind. SUMMARY This article explores 3 different PD care models. In reality, these models do not exist in isolation but can serve as a starting point for VOL. 24, NO. 1/JANUARY MARCH

6 GIROUX and FARRIS clinicians to examine current treatment practices and opportunities for change. Integral to the concept of quality care for PD is an assessment of the role that our societal biases play in our view of health and wellness for aging and progressive disorders. In our models, the focus of care changed from that of treating the disease to treating acute functional problems to a person-centered approach. Emerging themes include a greater emphasis on functional independence, preference-based QOL, attainment of personal wellness while living with a chronic illness, and active self-health management. Taken together, these themes ultimately give the patient the control that is slowly taken away when living with a chronic illness. Understanding these models, the history and rationale for their existence, potential for future improvements and directions for growth will lead the way toward best care practices for progressive illness such as PD. REFERENCES 1. Mayeux R, Denaro J, Hemenegildo N, et al. A population-based investigation of Parkinson s disease. Arch Neurol. 1992;49: Suchowersky O, Reich S, Perlmutter J, Zesiewicz T, Gronseth G, Weiner WJ. Quality Standards Subcommittee of the American Academy of Neurology. Practice Parameter: diagnosis and prognosis of new onset Parkinson disease (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2006;66(7): Adler CH. Nonmotor complications in Parkinson s disease. Mov Disord. 2005;20(suppl 11):S23 S Witjas T, Kaplan E, Azulay J, et al. Nonmotor fluctuations in Parkinson s disease: frequent and disabling. Neurology. 2002;59(3): Shulman L, Taback R, Bean J, Weiner W. Comorbidity of the nonmotor symptoms of Parkinson s disease. Mov Disord. 2001;16: Hillen M, Sage J. Nonmotor fluctuations in patients with Parkinson s disease. Neurology. 1996;47: Miller A, Iris M. Health promotion attitudes and strategies in older adults. Health Educ Behav. 2002;29(2): Slawek J, Derejko M, Lass P. Factors affecting the quality of life of patients with idiopathic Parkinson s disease a cross-sectional study in an outpatient clinic attendees. Parkinsonism Relat Disord. 2005;11(7): Turnbull G, Millar J. A proactive physical management model of Parkinson s disease. Top Geriatr Rehabil. 2006;22(2): Ashburn A, Jones D, Plant R, et al. Physiotherapy for people with Parkinson s disease in the UK: an exploration of practice. Int J Ther Rehabil. 2004;11(4): Gage H, Storey L. Rehabilitation for Parkinson s disease: a systematic review of available evidence. Clin Rehabil. 2004;18: Deane K, Ellis-Hill C, Jones D, et al. Systematic review of paramedical therapies for Parkinson s disease. Mov Disord. 2002;17(5): Mohr B, Muller V, Mattes R, et al. Behavioral treatment of Parkinson s disease leads to improvements of motor skills and to tremor reduction. Behav Ther. 1996;27: Muller V, Mohr B, Rosin R, Pulvermuller F, Muller F, Birbaumer N. Short-term effects of behavioral treatment on movement initiation and postural control in Parkinson s disease: a controlled clinical study. Mov Disord. 1997;12: Carne W, Cifu D, Marcinko P, et al. Efficacy of multidisciplinary treatment program on one-year outcomes of individuals with Parkinson s disease. Neurorehabilitation. 2005;20: Iansek R. Interdisciplinary Rehabilitation in Parkinson s Disease. Vol 80. Philadelphia: Lippincott Williams Wilkins; 1999; Wade D, Gage H, Owen C, Trend P, Grossmith C, Kaye J. Multidisciplinary rehabilitation for people with Parkinson s disease: a randomized controlled study. J Neurol Neurosurg Psychiatry. 2003;74: World Health Organization. International Classification of functioning, disability and health. Geneva, Switzerland: World Health Organization; Romeo J. Comprehensive versus holistic care. J Holist Nurs. 2000;18(4): Wagner E, Glasgow R, Davis D, et al. Quality improvement in chronic illness care: a collaborative approach. Jt Comm J Qual Improv. 2001;27: Paterson B. The shifting perspectives model of chronic illness. J Nurs Scholarsh. 2001;33(1): McGonigal G. Empowering health in chronic illness: a conceptual model. Br J Ther Rehabil. 1998;5(11): Bishop M, Chou C, Chan C, Rahimi M, Chan F, Rubin S. Wellness promotion for people with disabilities in private-sector rehabilitation: a conceptual and operational framework. J Rehabil Adm. 1999;24(2): TOPICS IN GERIATRIC REHABILITATION

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