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Assessing Quality of Life: By Whose Yardstick?
The goal of rehabilitation is to help people with disabilities live productive and satisfying lives, yet few studies have systematically examined what determines the quality of life of an individual with a neuromuscular disease (NMD). By whose yardstick should quality of life be measured? Are physicians and their staffs prepared to do all that they can do to proactively help their patients with NMD reach their full potential? The answers to these questions offer important insight into what influences the quality of medical care a person with a disability receives.
The Burden of Negative Attitudes.
Misinformation and comparisons to a perceived norm govern much of the way any minority group is viewed or judged, and people with NMD are no different. The bulk of a primary care physician's patients may be successfully treated by the standard medical model of intervention and cure. Contrast this with the case of a patient with a progressive NMD that has no cure, where a medical professional's toolkit of drug or surgery options has very limited value. Add to this the fact that most NMDs are rare enough that few primary care doctors, the gatekeepers at most HMOs, will ever see more than one or two cases in a career. It is in this medical hinterland of indecision and inexperience where people with NMDs must seek medical help, only to find that few medical professionals are prepared to offer basic information about the issues that influence the mental and physical health of the disabled. Given its relative rarity, a person with NMD who is fortunate enough to have access to information must become something of a consulting specialist to those from whom they are seeking treatment.
Lacking a clear medical model to guide the way, a doctor's attitudes and social values can take on greater weight when it comes to patient care. Perhaps not surprisingly, real-life medical decisions can reflect negative and yet commonly held cultural and institutional attitudes toward the disabled.
According to Nancy Seyden, co-director with Ted Abresch of the RRTC's research project that assessed measures of quality of life in disabled persons (Abresch et al., 1998), in-depth interviews conducted for this study revealed that most of the participants believed that society's attitudes toward disability were a major problem.
"The extent and impact was much more profound than I expected, especially because they also said that attitudes have improved compared to what they used to be," said Seyden. "If we could find a way to improve public attitudes and understanding, adjustment to a long-term disability would be easier."
A participant in the RRTC study remarked, "Physical barriers did not turn out to be the problem.... Social attitudes were the most profound barriers throughout the course of my life," (interview #4, 3/17/95).
Another reported, "My biggest barriers have been my own attitudes to begin with. And then when I worked on that attitude and became very healthy with where I was as a disabled person, it became even more glaring, the attitude problems that society has with disability" (interview #36, 8/12/96).
Trends and Countertrends in Health Care. These observations by study participants were supported by the literature review, which found that members of the medical profession can significantly underestimate the quality of life of individuals with severe neuromuscular diseases, and this may affect the level of service these individuals receive. In the most egregious cases this scenario can be life threatening.
There is an ongoing evolution from a medically based model of care to a model that incorporates consumer control and autonomy. Health-related quality-of-life concepts outside of physical needs are increasingly being included in medical treatment models.This trend has resulted in patients taking much more responsibility for their medical care, such as a woman's right to choose among several well studied options to treat her breast cancer.
This is in contrast to people with disabilities, who frequently do not receive adequate information when it comes to informed decision-making about treatment options. There are also disturbing indications that treatment models for individuals with NMDs run counter to the current trend of increased autonomy and are in fact more akin to the historical model, where doctors had a paternalistic role in their patients' lives and routinely made life-and-death decisions for them. Several studies, for example, have shown that misconceptions regarding the potential quality of life of an individual who requires ventilatory support have prevented physicians from prescribing these life-sustaining treatments. Oftentimes, these decisions are made without regard to the patient's desires. One study (Dracup & Raffin, 1989) recommended that physicians rely on their own assessment of the patient's quality of life "independent of the patient's feeling" when making the decision to institute mechanical ventilation. Another study (Bach & Campagnolo, 1992) surveyed how ventilator users who have Duchenne muscular dystrophy assess their own quality of life and compared it to the assessment of the same patients by their physicians. Not only did these physicians underestimate the quality of life of this group, but the physicians who discouraged ventilator use underestimated the quality of life to a greater degree than the physicians who recommended ventilator aids. In addition, the physicians who discouraged ventilator use cited poor quality of life as the most common reason for not recommending its use. As stated by Bach, "the physicians' judgment of the patients' quality of life and their failure to accurately evaluate their patients' satisfaction with life influenced whether or not life-sustaining ventilatory assistance was used."
These and other studies indicate that most people react negatively to things they do not understand. Paradoxically, while quality of life can be underestimated and vital treatment options proscribed, the opposite is also true. Outside the family, few people have a clear idea of what day-to-day reality is like for a person living with NMD, and the everyday problems that those with NMDs do face can be overlooked.
Even researchers who specialize in working with people with NMDs find that understanding the ramifications of living with NMD is an on-going, educative experience. Abresch and Craig McDonald, ex-officio member of the RRTC Advisory Board and medical director of the Neuromuscular Disease Clinic at the UC Davis Medical Center, discovered this firsthand after attending the Muscular Dystrophy Association's summer camp for boys with Duchennes muscular dystrophy (DMD).
"We've worked with people who have neuromuscular diseases for years, but we never understood what it was really like until we spent two nights in a cabin with twenty boys with DMD," Abresch said. "Craig and I turned each of the boys every two hours throughout the night. Sometimes, because of the pain, it would take fifteen minutes to get the pillows just right, to position the legs just so. I never realized how hard it is for them to get comfortable, or how exhausting it must be for the parents. Nevertheless, the kids woke up each morning raring to go. Discomfort is a fact of life for them, but enjoyment of life happens on another wavelength simultaneously."
Adapting to Disability.
First and foremost, it is important to consult the right source of information - the affected individual - in order to understand how persons with NMD view their own circumstances. Individuals with long-standing disabilities generally accept their functional limitations and only a small minority consider it to be the worst thing that ever happened to them. People with disabilities often view it more as an inconvenience and cause of frustration than as a catastrophe-disability ranked sixth on a list of life's most stressful events (Holmes and Rahe, 1967). Higher rankings were given for death of a spouse, divorce, marital separation, imprisonment, and death of a family member.
Unfortunately, it is not widely known that people with disabilities can adapt so well to their impairments. From the point of view of a majority of disabled individuals, the presumption by health-care professionals that they will not have a good quality of life frequently limits their potential rehabilitative treatment and reduces their own expectations. Considering the discrepant views of the quality of life between disabled and nondisabled individuals, it is not surprising that individuals with disabilities view attitudes of people toward disabilities as their largest problem, one that permeates every part of their lives.
Assessing Quality of Life: A Comprehensive Approach.
Given their significance for policy and their power to influence medical care, today, more than ever, it is important to develop effective instruments with which to assess quality of life from the disabled individual's point of view and insure informed medical practice. Potential uses of these assessment tools include 1) monitoring the health and social status of a given population, 2) evaluating health care policy, 3) conducting clinical trials, 4) assessing the effectiveness of rehabilitation services, and 5) justifying the allocation of limited social and healthcare resources. In a perfect world it would be the individual's own assessment of quality of life that should have the most influence on treatment options. However, reality dictates that some objective measures be combined with subjective measures in order to determine health policy, particularly in light of the trend toward managed health care, where the allocation of resources is being carefully scrutinized as to the effectiveness of their use.
To study the effect of disablement on quality of life, investigators have traditionally focused on objective indicators such as the individual's functional ability in terms of their capacity to carry out activities of daily living, ability to work, employment status, income, and the number of times the individual engages in social activities per week. Quality of life is inferred from the findings. The effectiveness of rehabilitation treatments is evaluated by the improvement in these areas. However, these indicators have not been able to explain a significant amount of variance in the data from quality of life studies. More recent studies have therefore included patients' subjective feelings about various aspects of their lives, such as expectations. The benefit of using subjective scales is that they permit individuals to ascribe meaning to their situation. They also permit comparison between the objective and subjective measurements. Many researchers and clinicians now agree that assessment of quality of life requires a multifaceted approach in order to obtain a comprehensive assessment of the impact of an illness, a treatment, or rehabilitative service on quality of life.
Assessment in Persons with NMD. Defined broadly, quality of life is a concept that takes into consideration physical, psychological, social, and financial attributes that describe an individual's ability to function and derive satisfaction in his or her life. However, the majority of studies conducted on subjects with neuromuscular diseases to assess quality of life have been limited to end-of-life care issues. Typically, these studies have been performed to help physicians assess the patient's quality of life when determining whether mechanical ventilation should be administered. Few of these studies have evaluated how individuals with neuromuscular diseases perceive their own quality of life.
The RRTC study used the Index of Domain Satisfaction Scale (Campbell et al., 1976) to assess quality of life among participants, who were asked to rate their life satisfaction on a scale ranging from very dissatisfied to very satisfied.
Results from this survey revealed that a control group was between somewhat satisfied and very satisfied with their life in general, whereas the group with neuromuscular diseases was somewhat satisfied with life in general. The latter group was the least satisfied with their recreational activities, followed by sexual life and general health. Not surprisingly, money matters were a major source of dissatisfaction, since these individuals have lower incomes than the general public. Other domains with which they were less satisfied than controls were daily living tasks, employment, and social life. Individuals with NMDs were most satisfied with housing and family life, followed by neighborhood and spiritual life, which was followed by emotional well-being, marriage, transportation, and life as a whole.
Illustrated in Figure 1 is a summary of the RRTC's survey of 315 post-poliomyelitis individuals who were not ventilator users, and these data are compared with the results of two other published studies. Bach and Campagnolo (1992) also used the Index of Domain Satisfaction Scale to assess the effect of severe disability and ventilator use on life satisfaction and perceived well-being for a population of 395 post-poliomyelitis ventilator users (PVAI) and a control group of nondisabled individuals (CTRL). Fuhrer et al. (1992) used the same instrument to assess life satisfaction among 140 individuals with spinal cord injury (SCI). The quality of life perceived by persons with NMD was substantially higher than that presumed for them by the health care professionals (2.5 ( 1.35). The greatest differences between the quality of life perceived by the post-poliomyelitis group and the controls were in the areas of general health and sexual life. Social life, transportation, and employment were also significantly lower in the post-poliomyelitis group than in the control group. There was no significant difference in their satisfaction with family life, and in fact the post-poliomyelitis group was more satisfied with housing than the controls.
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Figure 1, Bar Chart
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Figure 1. Life Domain Satisfaction Measures from individuals with neuromuscular diseases (NMDs), post-polio ventilatory users (PVAI), spinal cord injury (SCI), and nondisabled controls (CTRL) were compared across three studies.
To better understand factors that critically affect life satisfaction, Fuhrer and colleagues also evaluated the association between impairment, disability, handicap, and life-satisfaction among persons with spinal cord injury. They found no statistical correlation between the Life Satisfaction Index-A and impairment or disability. Rather, the strongest association with life satisfaction was in perceived control over one's life.
Preliminary analysis of the RRTC's life-satisfaction data of individuals with neuromuscular diseases agrees with the above findings. The strongest associations with life satisfaction were emotional well-being, perceived control, satisfaction with employment/retirement, and self-assessed health. These factors were followed by satisfaction with social life, family support, recreational opportunities, financial stability, spirituality, and sexual relations. Impairment and disability, as measured by degree of mobility, dexterity, and activities of daily living, did not significantly affect life satisfaction and quality of life. In-depth interviews revealed that quality of life depends upon whether an individual receives adequate services and whether he or she has the same choices and opportunities to fully participate in the community.
Perceived control is a singularly important factor that affects quality of life. While issues of physical autonomy are generally being adequately addressed by medical and social services, creating maximum control for an individual has not, and this is a factor that directly leads to enhanced quality of life and well-being. Since control is such an important factor in determining quality of life, medical professionals at all levels need to be aware of its significance. Unfortunately, however, health care is becoming a business that is competing on the basis of price, not on quality of life. Physicians are not being reimbursed for ensuring that mental and social well-being are addressed along with the physical aspects of treatment.
Building a Sense of Control. Survival and security are often of paramount concern for people with severe disabilities, and these prevent them from achieving levels of fulfillment beyond basic survival. The availability and stability of quality caregivers can determine basic needs such as whether the disabled person goes to bed at night or to the bathroom when needed. A disabled person may be at the highest level of functioning in the morning and the most basic survival level in the evening because a caretaker did not show up. When personal care assistance is essential for a person to manage everyday life, the quality of life is profoundly affected by the competency, trustworthiness, and dependability of the caregivers. Disabled persons, who utilize personal care assistants, are seeking both control and choice. They want to have a say about who comes into their home, when they come into their home, and who provides personal care. Unfortunately, medical issues that are caused by lack of adequate personal assistants are too often overlooked by the medical community. Improvements need to be made in the availability of competent personal care assistants and in the development of adequate funding mechanisms to pay for personal care assistants. Individuals with disabilities need to learn skills to manage personal care assistants. Managing these assistants can sometimes be more difficult and time consuming than problems caused by the disability itself. Providing adequate information and training will lead to better use of aids and improved perception of control.
Other aspects that improve perceived control are increased environmental resources that allow an individual to direct their lives and have better control over their physical environment. For example, an electric wheelchair may increase mobility, social functioning, and well-being of a person with tetraplegia, even though it may not be needed for survival. However, lack of material resources may ensure that individuals never have the opportunity to attain higher pursuits and have control over their lives. Work disincentives and the insecurity created by potential loss of medical benefits or attendant care discourage people from achieving a higher quality of life. Although these do not at first appear to be medical concerns, these issues affect the health and well-being of individuals with neuromuscular diseases.
Top Priorities to Support Quality of Life in Persons with Neuromuscular Diseases.
A report by Burns et al. (1990), which supports preliminary findings in the RRTC's study, outlines the greatest needs for persons with physical disabilities as the following:
Individuals with neuromuscular diseases often have no idea what services are available or how to obtain the services that are available. In addition, most individuals surveyed in the RRTC study expect physicians to be liaisons who direct them to these services. However, interviews with physicians show that they see their role as being limited to health issues and do not see themselves as a resource to provide this information or coordinate service delivery. Social issues-- transportation needs, availability of quality personal care assistants, vocational rehabilitation, and independent living services--are areas where this type of information and service are needed.
Studies Cited: Abresch, RT, Seyden, NK, Wineinger, MA. In: Physical Medicine & Rehabilitation Clinics of North America (G.T. Carter, editor). W.B. Saunders: Philadelphia. February, 1998. Bach JR, Campagnolo DI. Arch Phys Med Rehabil 73:934-939, 1992. Burns TJ, Batavia AI, Smith QW, et al. Arch Phys Med Rehab 71:138-143, 1990. Campbell, A, Converse, PE, Rodgers, WL. In: The Quality of American Life: Perceptions, Evaluation and Satisfaction (FM Andrews, JP Robinson, editors), New York: Russell Sage, 1976, p. 87-88. Dracup K, Raffin T. Am Rev Respir Dis 140:S44-6, 1989. Fuhrer MJ, Rintala DH, Hart KA, et al. Arch Phys Med Rehabil 73:552-557, 1992. Holmes, TH, Rahe RH. J Psychoanal Res 11:213-218, 1967.
