|Home > RNJ > 2005 > September/October > Secondary Conditions and Life Satisfaction Among Polio Survivors|
Secondary Conditions and Life Satisfaction Among Polio Survivors
Persons living with the effects of polio are often at increased risk for the development of secondary conditions and disabilities that can lead to further decline in health status, independence, functional status, life satisfaction, and overall quality of life. The purpose of this study was to explore the frequency of selected secondary conditions, factors associated with these conditions, and the relationship between secondary conditions and quality of life among polio survivors. Data from a large convenience sample (N = 2,153) indicate that secondary conditions are prevalent and associated with decreased life satisfaction. Prompt identification and treatment of secondary conditions before they progress to greater impairment and/or disability and attention to an overall healthful lifestyle is important to preserve function and maintain quality of life of polio survivors.
In the United States, there is a substantial number of individuals who acquired a functional limitation or disability as a child and have survived to middle and later life stages. Among the first and largest groups to age in the context of living with disability are persons who acquired and survived poliomyelitis during the epidemics of the first half of the 20th century. The average age of the approximately 1 million polio survivors in the United States is now over 55 years (Tompkins, 2000), and a substantial number are already in their sixth or seventh decade of life. Although polio survivors have been known for their substantial positive achievements in the face of residual impairment and disability in early life, the increasing burden of age-related declines in function and new chronic conditions may challenge their ability to cope and negatively affect their quality of life and life satisfaction.
Recent research findings and clinical reports indicate that many persons aging with disability are experiencing premature losses in function (Dinsmore, 1998). Secondary conditions are new conditions or problems that develop during the life course of a person with a primary disabling condition such as polio, are causally related to the primary condition, and may make it more difficult for those individuals to maintain their hard-won independence. These new secondary conditions may interact with old impairments, and together, they may limit substantially functional abilities.
Secondary conditions may be a new pathology, an additional impairment, a new functional limitation, or an additional disability (Pope & Tarlov, 1991). A wide range of secondary conditions have been reported, including urinary tract infections, contractures, depression, pain, fatigue, pressure sores, deconditioning, osteoporosis, obesity, bowel problems, and poor cardiorespiratory function (Marge, 1988; Seekins, Clay, & Ravesloot, 1994). Orthopedic complications reflecting the prolonged abnormal stress on joints due to muscle weakness are common in polio survivors (Kidd, Williams & Howard, 1996). These secondary conditions included scoliosis, arthritis, osteoporosis, and progressive instability of the joints. Other secondary conditions known to occur in polio survivors include peripheral nerve entrapment caused by skeletal deformity and respiratory insufficiency related to progressive nocturnal hypoventilation (Kidd et al.).
Despite these problems, national surveys indicate that presently, the overall life satisfaction of polio survivors is high. Of those individuals, however, 65% also perceive their health as declining (Tompkins, 2000). Burger and Marincek (2000) reported that compared with the time of their maximal functional recovery, polio survivors who have experienced new symptoms reported significant decreases in satisfaction with their general life, their independent performance of daily activities, and their personal relationships. Kemp, Adams, and Campbell (1997) found no significant difference in the life satisfaction scores of 121 polio survivors and an age-matched control group of 60 healthy participants with similar sociodemographic backgrounds. Polio survivors who were experiencing new symptoms and new functional declines, however, scored significantly higher on depression scales and had lower life satisfaction scores than people with a history of polio who had not experienced new functional changes.
The Institute of Medicine model for development of secondary disability is a useful framework that can provide both a conceptual overview of the process of secondary disablement and a focus for assessment and intervention (Pope & Tarlov, 1991). As seen in the adapted model (Figure 1), the process of secondary disablement is influenced by the interaction of behavioral, environmental, and biological factors. These factors interact with the primary disabling condition to influence the process of secondary disablement—a process that ultimately results in greater impairment, limitation, and disability. The process of secondary disablement interacts with quality of life. In this model, quality of life is represented as a multidimensional phenomenon that includes relationships, productivity, and survival. Over time, the developmental and aging processes of persons with chronic disabling conditions typically result in increased impairment. Therefore, if quality of life is to be maintained, it is important to consider both the occurrence and prevention of other factors that may diminish quality of life.
Persons living with the effects of polio often are at increased risk for the development of secondary conditions that can lead to further decline in health status, independence, functional status, life satisfaction, and overall quality of life. Prompt identification and treatment of secondary conditions before they progress to greater impairment and/or disability is important to preserve function of polio survivors. To date, however, few studies have examined the secondary conditions experienced by polio survivors and how these may be related to perceptions of quality of life. The purpose of this study was to explore the following questions:
Data Collection Procedures
This study used a descriptive correlational design and cross-sectional data collected from a large national sample of polio survivors (Stuifbergen, Seraphine, Harrison, & Adachi, 2005). After the study was approved by the local institutional review board, a brief letter describing the study, sample criteria, and details of participation was sent to a random sample of 2,962 individuals on the mailing list of the International Polio Network, an organization representing approximately 6,000 persons in the United States who had polio. An introductory letter from the executive director of the organization provided an overview of the study and a second letter from the investigator described the purpose of the study, and the details of participation. Persons who were interested in participating were asked to return an enclosed form providing their name and address to the investigator.
A packet with a consent letter, the study instruments, and a stamped, preaddressed envelope was mailed to each of the 2,302 persons who expressed interest in participating in the study; 78% of those were sent introductory information. A handwritten thank-you note and a $10 money order were sent to the 2,161 persons with polio who subsequently completed and returned the questionnaire booklet. Eight of the questionnaires were not usable because of incomplete data or failure to meet sample criteria, resulting in 2,153 usable surveys.
Participants were between the ages of 35 and 95 years with an average age of 62 (SD = 9.76). Most were White or non-Hispanic (97%) and female (69%). The average years of completed education was 15, 88% had at least a high school diploma, and 49% had completed a bachelor’s degree or higher. Most respondents were married (66%). The majority (73%) were not presently in the labor force; 21% reported being unemployed due to their disability, while only 20% were working full time for pay.
With respect to the polio experience, the age of initial polio infection ranged from less than 1 year to 41 years, with the average age at the initial polio infection being 9.5 years (SD = 8.1). Participants reported that their initial polio infection occurred between 1910 and 1991, with the mean year of infection being 1947. The majority (82%) were hospitalized at the time of the initial infection, and 38% were hospitalized for more than 3 months. With regard to use of assistive devices (respondents could use more than one type), 24% reported use of braces on one or both legs, 31% used a cane or crutch, 20% used a manual wheelchair, and 31% used an electric wheelchair or motorized cart. Twelve percent of the sample reported using aids to assist their breathing. Although slightly more than half of the respondents (53%) rated their overall health as good or excellent, 90% of the respondents indicated that compared to their physical best, they had experienced some to a great decrease in ability to carry on normal activities. Seventy-six percent of the sample (n = 1637) reported that they had been diagnosed with post-polio syndrome (PPS).
This convenience sample is similar in many respects to the estimates for the population of polio survivors in the United States compiled with data from the 1994–1995 National Health Interview Survey Disability Supplement. Tompkins (2000) reported that among a nationally representative sample of 566 polio survivors, half were over age 55, and the majority were female (57%), white or non-Hispanic (91%), married (65%), and had more than a high school education (57%). Only 24% of the representative national sample reported that they were unable to work, and only 11% of the national sample had received a physician’s diagnosis of PPS (an additional 23% thought they had symptoms indicating PPS). The national sample had somewhat more favorable health appraisals, with 74% rating their health as good, very good, or excellent.
A battery of instruments was included in the survey questionnaire. This article reports data only from the demographic and disability-related questions, the checklist of secondary conditions and the measure of quality of life. Before their use, all items were carefully reviewed by two experts in polio and in a procedural pilot test of the study procedures (Harrison & Stuifbergen, 2001).
A Background Information Sheet (BIS) was used to collect information on a variety of demographic characteristics and past and present experience with polio symptoms. Age, ethnicity, educational status, economic status, and employment status were determined from subjects’ self reports on the BIS. In addition, information was gathered about the initial polio diagnosis (e.g., age at diagnois, type of polio, hospitalization, and residual weakness). Information about past and present treatment and rehabilitation, and secondary disabilities was solicited using items from questionnaires developed by Tate and colleagues in the Wellness for Women with Polio study. The formatting and response sets of items related to secondary conditions were revised following a pilot study with 30 polio survivors (Harrison & Stuifbergen, 2001). Each condition or diagnosis was defined briefly for the participants. Participants were asked to indicate if they had ever experienced the listed condition (yes, no, don’t know), if they had been diagnosed with the condition (yes, no, don’t know), and to rate how extensive a problem each condition had been for them during the prior 3 months using a 4-point scale (0 = never a problem to 3 = significant problem).
Life satisfaction was operationalized as the participant’s score on the life satisfaction items of the Quality of Life Index-Multiple Sclerosis (QLI-MS) Version (Ferrans & Powers, 1985), a measure of general satisfaction with and the importance of various components that contribute to a good quality of life. The QLI originally was developed to measure quality of life of healthy persons, and specific versions have been developed for a number of patient groups, including persons with MS and persons with cancer. Since a version has not been developed for persons with polio, a panel of experts that included a polio survivor reviewed the MS version and found all items relevant to quality of life in persons with polio. The QLI subsequently was included in a pilot test of the instruments, and it performed as expected. The 72-item QLI is composed of two parts: part 1 measures satisfaction with various domains of life, and part 2 measures the relative importance of the same domains. Respondents are asked to rate each item on a 6-point scale, ranging from “very satisfied” to “very dissatisfied” for part 1 and “very important” to “very unimportant” for part 2. Life satisfaction scores were obtained by summing the scores for the 36 satisfaction items.
Data analysis involved use of descriptive statistics and correlations. The descriptive data analysis was implemented by using SPSS 11.0. Frequencies, means, and standard deviations were computed to obtain a profile of the sample on demographic and illness-related variables. The magnitude and statistical significance of all Pearson product-moment correlations were calculated. To examine the relationship among demographic and polio-related variables and the number of secondary conditions experienced and diagnosed, responses of “don’t know” to the secondary conditions and diagnosis questions were recoded as “no,” and a sum of the number of secondary conditions experienced and diagnosed was calculated. In addition, the score for the extent of difficulty posed by each condition (0–3) was calculated to obtain a total score for difficulty with secondary conditions (range 0–41).
Table 1 presents the percentage of respondents who indicated that they had experienced the secondary condition, had been diagnosed by a physician with the secondary condition, and the cumulative percentage of those who rated their difficulty with the condition over the last 3 months as moderate or significant. The most frequently experienced secondary conditions were new muscle weakness in previously involved muscles (88%), sensitivity to temperature in the extremities (85%), fatigue (82%), and chronic pain (72%). In addition to these conditions, more than half of the respondents had experienced sleep problems (71%), new muscle weakness in previously uninvolved muscles (62%), scoliosis, kyphosis or lordosis (55%), and depression (50%). In all but one condition (fractures for osteoporosis), the reported frequency of a physician diagnosis of the condition was less than the reports of experiencing the condition. Not surprisingly, the relative frequency of diagnosis compared with experience was higher for medical conditions (e.g., scoliosis and fractures) than for symptoms more commonly understood and identified by the lay population (e.g., fatigue, chronic pain, and weakness).
Although many individuals experienced various secondary conditions, they did not necessarily perceive these as moderate or significant problems during the last 3 months. As shown in Table 1, the majority of the sample perceived recent moderate or significant problems with new muscle weakness in previously involved muscles (70%), chronic pain (58%), temperature sensitivity (51%), and fatigue (59%). Among less frequently experienced secondary conditions, more than half of those who experienced contractures, fractures from osteoporosis, carpal tunnel syndrome, sleep problems, and obesity reported the condition was a moderate or significant problem during the last 3 months. The number of secondary conditions experienced ranged from 0 (n = 6) to 16 (n = 5), with an average of 8.32 conditions experienced (SD = 2.97). The number of secondary conditions diagnosed by a physician ranged from 0 (n = 8) to 16 (n = 1) with an average of 5.6 conditions diagnosed (SD = 3.32).
Table 2 presents the association of the total number of secondary conditions and diagnoses with various demographic and polio-related variables and life satisfaction. All variables were significantly related to the secondary conditions variables, with the exception of years of education. Moderate correlations (>.30) were observed between diagnosis with PPS (1 = yes, 0 = no), decrease in ability to carry on normal activities, and number of assistive devices and secondary conditions experienced or diagnosed. The individuals’ self-perceptions of their decrease in ability to carry on normal activities were the strongest demographic or polio-related correlate of secondary conditions experienced (r = .43, p < .001) or diagnosed (r = .43, p < .001) and the extent of difficulty with secondary conditions (r = .57, p < .001). Scores representing greater life satisfaction were significantly negatively related to the total secondary conditions experienced (r = –.36, p < .001), the total secondary conditions diagnosed (r = .36, p < .001), and greater difficulty experienced with secondary conditions (r = –.54, p < .001). The only other variable with a moderate correlation with life satisfaction was the extent of decrease in ability to carry on normal activities (r = –.42, p < .001).
Before interpreting the findings presented here, it is important to recognize several important limitations of the study. Although a large sample of participants representing every state in the United States was used, it was a convenience sample recruited through the International Polio Network. It seems reasonable to suspect that polio survivors experiencing greater difficulty might be more likely to join an informational support network and that members of this group might differ in unknown ways from the general population of polio survivors. A large percentage (76%) of this sample was diagnosed with PPS, and thus, a greater incidence and severity of secondary conditions might be expected. As expected, the correlations between diagnosis with PPS and the secondary conditions variables were in the moderate range. Although this sample may not represent the entire population of polio survivors, it may be quite similar to the group that healthcare professionals are likely to see in practice. In addition, there is no reason to expect that the relationships among variables seen here would be significantly different in a sample of individuals with less impairment.
Secondary conditions were prevalent among the polio survivors in this study, and the presence of these conditions was negatively related to life satisfaction scores. As noted in Table 1, there were considerable differences between the percentages of secondary conditions experienced and secondary conditions diagnosed. It is not clear whether participants had reported these conditions to a physician or whether a physician had assessed the client and failed to give a diagnostic label to their symptoms. Many of the secondary conditions participants reported are those that are most difficult for clinicians to treat—weakness, chronic pain, and fatigue. These conditions are not remedied easily with medications, and therefore, they may receive less direct attention and diagnostic assessment by clinicians. However, the cumulative impact of these conditions may significantly decrease the functional abilities and life satisfaction of polio survivors.
Assistive devices, lifestyle changes, and programs of physical activity and exercise may help with the fatigue, weakness, pain, and sleep problems frequently reported by these participants. Recent studies have documented that carefully designed and monitored progressive resistance exercises and cardiopulmonary conditioning can decrease general weakness and fatigue, increase muscle strength, improve cardiorespiratory fitness, and increase the efficiency of ambulation in polio survivors (Agre, Rodriquez, & Franke, 1997; Ernstoff, Wetterqvist, Kvist, & Grumby, 1996; Klein, Whyte, Esquenazi, Keenan, & Costello, 2002; March of Dimes, 2001; Milner-Brown, 1993; Willen, Sunnerhagen, & Grimby, 2001). Similar research studies testing behavioral interventions for sleep problems and pain are needed.
It is important for healthcare providers to realize that although impairment and disability related to polio are lifelong, they are not static. The overwhelming majority of the participants in this study (90%) experienced a decrease in ability to peform activities of daily living. Furthermore, their own perceptiaon about the extent of this loss was the strongest correlate of the secondary conditions variables and moderately correlated with life satisfaction.
Consumers and other healthcare professionals often are frustrated with the limited impact they have on the progression of secondary disablement. Perhaps this frustration is due in part to the current emphasis on the biological and medical model. The process of secondary disablement is influenced by the interaction of biological factors (e.g., aging), environment, behavior, and lifestyle factors and the initial impairment (Figure 1). At the present time, there is no “cure” for aging or a way to ameliorate the initial impairment caused by polio. Careful assessment of medical conditions is essential, but the roles that lifestyle, deconditioning, and overuse may play in causing secondary conditions must be taken into consideration. To minimize secondary conditions and promote quality of life in this population, interventions directed at the environment and behavioral and lifestyle factors must be considered. Since persons who have had polio have a continued vulnerability to secondary conditions, it is essential that comprehensive health promotion be part of their ongoing care (Marge, 1994).
There is little epidemiological information on the incidence and prevalence of secondary conditions among persons with disabilities, including those who have survived polio. These data from a large convenience sample indicate that these conditions not only are prevalent, but also are associated with decreased life satisfaction. Future research should explore ways that healthcare professionals can assist polio survivors to develop behaviors, including physical activity, proper nutrition, stress management, and spiritual growth, that enhance overall health, minimize secondary conditions, and maintain a good quality of life.
This work was supported by the National Institutes of Health, National Institute of Nursing Research Grant R01NR03195.
About the Author
Alexa K. Stuifbergen, PhD RN FAAN, is a professor at the University of Texas at Austin School of Nursing. Address correspondence to her at The University of Texas at Austin, School of Nursing, 1700 Red River, Austin, TX 78701-1499, or via e-mail at email@example.com.
Agre, J. C., Rodriquez, A. A., & Franke, T. M. (1997). Strength, endurance, and work capacity after muscle strengthening exercise in postpolio subjects. Archives of Physical Medicine & Rehabilitaton, 78, 681–686.
Burger, H., & Marincek, C. (2000). The influence of post-polio syndrome on independence and life satisfaction. Disability and Rehabilitation, 22, 318–322.
Dinsmore, S. T. (1998). Aging and the postpoliomyelitis syndrome. Topics in Geriatric Rehabilitation, 13(3), 25–34.
Ernstoff, B., Wetterqvist, H., Kvist, H., & Grimby, G. (1996). Endurance training effect on individuals with postpoliomyelitis. Archives of Physical Medicine and Rehabilitation, 77, 843–848.
Ferrans, C., & Powers, M. (1985). Quality of life index: Development and psychometric properties. Advances in Nursing Science, 8, 15–24.
Harrison, T., & Stuifbergen, A. (2001). Barriers that further disablement: A study of survivors of polio. Journal of Neuroscience Nursing, 33, 160–166.
Kemp, B. J., Adams, B. M., & Campbell, M. L. (1997). Depression and life satisfaction in aging polio survivors versus age- matched controls: Relation to postpolio syndrome, family functioning, and attitude toward disability. Archives of Physical Medicine and Rehabilitation, 78, 187–192.
Kidd, D., Williams, A. J., & Howard, R. S. (1996). Poliomyelitis. Postgraduate Medical Journal, 72, 641–647.
Klein, M. G., Whyte, J., Esquenazi, A., Keenan, M. A., & Costello, R. (2002). A comparison of the effects of exercise and lifestyle modification on the resolution of overuse symptoms of the shoulder in polio survivors: A preliminary study. Archives of Physical Medicine & Rehabilitation, 83, 708–713.
March of Dimes. (2001). Post-polio syndrome: Identifying best practices in diagnosis and care. White Plains, NY: The March of Dimes Birth Defect Foundation.
Marge, M. (1988). Health promotion for persons with disabilities: Moving beyond rehabilitation. American Journal of Health Promotion, 2(4), 29–35.
Marge, M. (1994). Toward a state of well-being: Promoting healthy behaviors to prevent secondary conditions. In D. Lollar (Ed.), Preventing secondary conditions associated with spina bifida or cerebral palsy (pp. 87–94). Washington, DC: Spina Bifida Association of America.
Milner-Brown, S. (1993). Muscle strengthening in a post-polio subject through a high-resistance weight-training program. Archives of Physical Medicine and Rehabilitation, 74, 1165–1167.
Pope, A. M., & Tarlov, A. R. (Eds.). (1991). Disability in America: Toward a national agenda for prevention. Washington, DC: National Academies Press.
Seekins, T., Clay, J., & Ravesloot, C. (1994). A descriptive study of secondary conditions reported by a population of adults with physical disabilities served by three independent living centers in a rural state. Journal of Rehabilitation, 60(2), 49.
Stuifbergen, A., Seraphine, A., Harrison, T., & Adachi, E. (2005). An explanatory model of health promotion and quality of life for persons with post-polio syndrome. Social Science & Medicine, 60, 383–393.
Tate, D. (1996). Secondary conditions questionnaire. Pages 1–10 with permission from the wellness for women with polio program, University of Michigan Medical Center.
Tompkins, L. (2000). Polio and post-polio syndrome survivors: Who are they and how are they doing? Program proceedings from the 8th International Post-Polio and Independent Living Conference, St. Louis, Mo.
Willen, C., Sunnerhagen, K. & Grimby, G. (2001). Dynamic water exercise in individuals with late poliomyelitis. Archives of Physical Medicine and Rehabilitation, 82, 66–72.