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Health-Related Quality of Life in Patients With Moderate to Severe Chronic Obstructive Pulmonary Disease: A Concept Analysis April L. Mouser, RN, MSN, DNP April L. Mouser, RN, MSN, DNP, is Assistant Professor and Simulation Center Director, School of Nursing, Indiana University Kokomo, Kokomo, Indiana.
Search terms: Chronic obstructive pulmonary disease, concept analysis, health-related quality of life Author contact: [email protected], with a copy to the Editor: [email protected]
AIM: The purpose of this concept analysis is to examine the health-related quality of life in patients with moderate to severe chronic obstructive pulmonary disease (COPD). BACKGROUND: COPD is the third leading cause of death in the United States. Health-related quality of life (HRQoL) in patients with moderate to severe COPD has not been clearly defined. DESIGN: Walker and Avant’s concept analysis methodology was employed. REVIEW METHODS: The author examined articles focusing on QoL, HRQoL, and HRQoL in COPD. RESULTS: The concept analysis explores the negative consequences related to COPD while defining HRQoL and the characteristics of positive HRQoL. CONCLUSION: Patients living with COPD should be assessed for HRQoL status.
Chronic obstructive pulmonary disease (COPD) is a significant problem in the United States and in the world. In 2011, approximately 6.3% of U.S. citizens, an estimated 15 million people, were diagnosed with COPD (Centers for Disease Control and Prevention [CDC], 2012). COPD is also the third leading cause of death in the United States (Kochanek, Xu, Murphy, Miniño, & Kung, 2011). According to the World Health Organization (WHO), more than 3 million people died of COPD worldwide in 2005, a number equal to 5% of all deaths in that year (2008). Estimates show that COPD will become the third leading cause of death worldwide by 2030 (WHO, 2008). COPD is a disease state distinguished by airflow limitation that is not reversible (Bourbeau, 2004). Physical symptoms include cough, dyspnea, increased sputum production, and a progressive decline in functional capacity and health status (Bourbeau, 2004). COPD is noted to have a profound effect on the patient as well as the healthcare infrastructure (Bourbeau, 2004; CDC, 2012). Individuals living with COPD experience negative and distressing outcomes such as social isolation, dependency, depression, ineffective coping, dissatisfaction, and a feeling of helplessness (Fan, Curtis, Tu, McDonell, & Fihn, 2002; Habraken et al., 2009; Sant’Anna et al., 2003). These outcomes are also characteristics of a negative health-related quality of life (HRQoL). Health-related quality of life and quality of life (QoL) are both ill-defined concepts in the literature. The subjective nature of QoL and HRQoL presents a challenge when © 2013 NANDA International, Inc. International Journal of Nursing Knowledge Volume 25, No. 2, June 2014
defining the concepts. Each definition of HRQoL is specific to the disease process being assessed (Dugger, 2010; Taylor, Gibson, & Franck, 2008; Wyman, 1998). HRQoL, as a concept, is more narrowly defined than QoL due to the focus of health interventions on QoL (Sloane et al., 2005). HRQoL in patients with moderate to severe COPD has not been clearly defined.
Literature Review Theoretical Definitions of Health-Related Quality of Life An exhaustive literature review was conducted to assess the concept of HRQoL. The first search focused on articles defining quality of life since HRQoL is a derivative or related term. According to the World Health Organization Quality of Life (WHOQOL) Group: “WHO defines quality of life as an individual’s perception of their position in life in the context of the culture and value systems in which they live, in relation to their goals, expectations, standards, and concerns” (1997, p. 1). This work and definition of QoL are seminal in nature. The description is broad, while the concept is affected by the interrelationships of physical health, psychological state, independence, social engagement, and the environment (WHOQOL Group, 1997). Cooley argued from a social 73
Health-Related Quality of Life in Patients science perspective that QoL is the impact of the disease and treatments on the functional determinants of an individual (as cited in Taylor et al., 2008, p. 1826). Several other definitions of QoL were assessed during the literature review. Once a basic understanding of the parent concept, QoL, was established, searches focused on the definition and description of HRQoL. Wyman notes through work with adults experiencing urinary incontinence that HRQoL is an “abstract, subjective, multidimensional concept with no universal definition” (1998, p. 779). Similarly, Sloane et al. note that HRQoL is focused solely on “those aspects of quality of life that can be affected by health care interventions” (2005, p. 37). Clarification of the concept of quality of life was made in the field of medicine while working with nursing home patients living with dementia. While the focus of HRQoL is the effect of health interventions, other authors have identified the determinants associated with the definition of health-related quality of life. Wodchis, Hirdes, and Feeney define HRQoL as “the value assigned to duration of life as modified by the impairments, functional states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy” (2003, p. 491). HRQoL is specific to each disease state or condition. The theoretical definition most appropriate to the population of interest, patients with moderate to severe COPD, is derived from Moy et al. “Health-related quality of life is patient-centered and integrates the complex physiological and psychosocial effects of Chronic Obstructive Pulmonary Disease on a person’s life” (2009, p. 2). See Appendix A for a complete listing of theoretical definitions associated with QoL and HRQoL. Operational Definitions of Health-Related Quality of Life There are various instruments to measure or operationalize the concept of HRQoL. Eight tools are specific to HRQoL in relation to obstructive respiratory disease or COPD specifically. The St. George’s Respiratory Questionnaire (SGRQ) is a highly accepted and widely used tool to measure determinants of HRQoL, including symptoms, impacts, and activities affected by COPD (Jones, Quirk, & Baveystock, 1991). However, this tool does not address emotional function or coping skills of patients living with moderate to severe COPD. The Seattle Obstructive Lung Disease Questionnaire (SOLDQ) is the only tool which measures three HRQoL dimensions—physical function, emotional function, and coping skills—as well as treatment satisfaction (Tu, McDonell, Spertus, Steele, & Fihn, 1997). See Appendix A for a complete listing of operational definitions associated with QoL and HRQoL. Method of Concept Analysis The purpose of analyzing a concept of interest is to further define and clarify the concept in terms of the 74
A. L. Mouser phenomenon and population of study. Various methodologies exist which can be employed to complete the concept analysis. In this article, the author utilized the method of concept analysis developed by Walker and Avant (2011). This technique defines necessary components for a complete concept analysis. These elements include theoretical and operational definitions, defining attributes, antecedents, consequences, and empirical referents. Additionally, this method incorporates scrutinizing the use of the concept within cases to further define and illustrate the concept in practice. Defining attributes are described by Walker and Avant as recurring characteristics found within the literature that define the concept. Antecedents are “events or incidents that must occur prior to the occurrence of the concept” (Walker & Avant, 2011, p. 167). Conversely, consequences are “those events or incidents that occur as a result of the occurrence of the concept” (Walker & Avant, 2011, p. 167). Finally, empirical referents are the presence of phenomena that validates the incidence of the concept itself (Walker & Avant, 2011). The visual representation of HRQoL in patients with moderate to severe COPD is provided in Figure 1. The process of concept analysis leads to a deeper meaning and recognition of the impact of the concept within clinical practice. This can include improved assessment and intervention on the part of patients and families. Concept analysis is an integral part of advancing evidencebased practice in nursing today. Walker and Avant (as cited in Dugger, 2010, p. 113) emphasize, “The only way we will be able to demonstrate the evidence base for our practice is to be able to first describe the phenomena in a measurable or at least communicable way.” An assortment of databases was employed during the literature search concerning the concept analysis. These databases include Proquest Health and Medical Complete, MEDLINE, CINAHL, and Google Scholar. The author examined articles focusing on QoL, HRQoL, and HRQoL of patients with COPD. Articles were reviewed from the past 10 years to capture the historical perspective of HRQoL in patients with moderate to severe COPD. Several outstanding articles from 2003 were included. Except for earlier decisive and seminal works focused on tool development that measure and define HRQoL, articles prior to 2002 were eliminated in an effort focus on the most recent literature. Concept Analysis Defining Attributes Defining attributes are described by Walker and Avant (2011) as recurring themes found within the literature that distinguishes the concept and are also known as “the heart of concept analysis” (p.162). Taylor, Gibson, and Franck describe the defining attributes of HRQoL as subjective, multidimensional, dynamic, and are affected by the achievement of goals or aspirations and the constraints of ill health and treatment (2008).
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Figure 1. Concept Analysis of Health-Related Quality of Life (HRQoL) in Moderate to Severe Chronic Obstructive Pulmonary Disease (COPD)
Persisting themes found within the literature in regards to negative HRQoL in patients with moderate to severe COPD include social isolation, dependency, depression, ineffective coping, dissatisfaction, and feelings of helplessness (Fan et al., 2002; Habraken et al., 2009; Sant’Anna et al., 2003). In contrast, the defining attributes of a positive HRQoL include increased social engagement, increased independence, decreased depression, satisfaction and acceptance of one’s circumstances, effective coping and adaptation to circumstances, and self-efficacy (Taylor et al., 2008). The author utilized themes found in the literature, SOLDQ, SGRQ, and theoretical definitions to identify the defining characteristics of HRQoL in patients with moderate to severe COPD. Cases Model case. According to Walker and Avant (2011, p. 163), a model case is “an example of the use of the
concept that demonstrates all the defining attributes of the concept.” They additionally note that the model case is a “pure case of the concept” (p. 163). The following cases were created by the author and include fictitious names, locations, and situations. The following is a model case for the concept HRQoL in patients with moderate to severe COPD that are properly assessed and treated. Mrs. Jones was diagnosed with moderate COPD for 3 years. When she was first diagnosed, Mrs. Jones was seen by her primary care physician and was treated without her input. After 1 year with this care, Mrs. Jones was referred to a recommended pulmonologist in the area. She was placed on appropriate pharmacologic treatment, referred to pulmonary rehabilitation, and given health education to assist her in managing her COPD at home. After the first month of treatment, Mrs. Jones was asked to assess her physical function, emotional function, coping skills, and treatment satisfaction. The pulmonologist and nurse reviewed the results of the survey with Mrs. 75
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Jones. With her input, the treatment plan was adjusted to meet Mrs. Jones’ needs. Mrs. Jones said, “When I was first diagnosed, I didn’t know how to help myself. I felt helpless. I never left home out of fear that I would become short of breath or run out of oxygen. I felt so dependent on others. I was depressed and did not know if I could go on.” She indicated that now she not only knows how to manage her COPD, but she feels satisfied with her circumstances. She notes, “I know I can’t get rid of the COPD, but now I feel like I’m in control of my breathing and my treatment. That means the world to me.” She now is involved in several community groups, including the chair exercises at the senior citizen center. She even volunteers to assist with delivering meals to men and women in her community. This case includes all the defining attributes of positive HRQoL, including social engagement, increased independence, effective coping, satisfaction, and acceptance of one’s circumstances.
anxiety regarding her dyspnea, Ms. Lee is taking more than the recommended dosage of lorazepam to induce sleep. When Ms. Lee is questioned about her health condition, she states, “This is no way to live. I can’t breathe. I can’t bathe. I can’t do anything on my own. I have no life. I wish I would just die.” In this case, none of the defining attributes of positive HRQoL were present.
Borderline case. The borderline case is defined as the instance that contains “most of the defining attributes of the concept being examined but not all of them” (Walker & Avant, 2011, p.164). Walker and Avant additionally note that these cases are “inconsistent in some way from the concept under consideration” (2011, p. 164). Mr. Fife’s story is an example of a borderline case for the concept HRQoL in patients with moderate to severe COPD that are properly assessed and treated. Mr. Fife was diagnosed with severe COPD 3 years ago. He lives with his son. His son takes Mr. Fife to his pulmonologist who treats COPD with the appropriate pharmacologic treatments. While his son notes that his COPD does not seem to hinder Mr. Fife’s physical function, Mr. Fife is unable to express feelings related to treatment of his COPD due to significant cognitive impairment. Mr. Fife is active at the senior citizen center and adult day care he attends. His son notes that Mr. Fife also laughs and appears content. This case shows Mr. Fife socially engaged, content, and as independent as his medical diagnosis allows; however, he is unable to identify and articulate his experience of an enhanced HRQoL.
Consequences. Consequences are “those events or incidents that occur as a result of the occurrence of the concept” (Walker & Avant, 2011, p. 167). For individuals living with COPD, negative and distressing outcomes can be experienced, including social isolation, dependency, depression, ineffective coping, dissatisfaction, and feelings of helplessness (Fan et al., 2002; Habraken et al., 2009; Sant’Anna et al., 2003). A patient with positive HRQoL typically experiences increased independence, social engagement, and satisfaction with and acceptance of one’s circumstances. In the case of HRQoL in patients experiencing moderate to severe COPD, the defining attributes and consequences are identical.
Contrary case. The contrary case is described by Walker and Avant as a “clear example of ‘not the concept’ ” (2011, p. 166). An example of a contrary case for the concept HRQoL in patients with moderate to severe COPD that are properly assessed and treated involves Ms. Lee. Ms. Lee was diagnosed with severe COPD 1 year ago. She was treated by her primary care physician during this period. She was placed on long-term oxygen therapy but with no additional pharmacologic treatment. Additionally, she was not educated regarding self-management of COPD. Ms. Lee has dyspnea that is severe at rest and with exertion. Due to this dyspnea, Ms. Lee refused to leave her home over the last 6 months. She was admitted to the hospital eight times in the last 6 months, which left her feeling depressed and helpless. She depends on her daughter for all of her needs, including cooking and bathing. In an effort to cope with her 76
Variables Antecedents. Walker and Avant describe antecedents as “events or incidents that must occur or be in place prior to the occurrence of the concept” (2011, p. 167). The antecedents for the concept of HRQoL in patients with moderate to severe COPD include a diagnosis of moderate to severe COPD, ability to evaluate one’s life, ability to identify the perception of quality of life, and the ability to make a decision about one’s quality of life (Taylor et al., 2008).
Empirical Referents Walker and Avant (as cited in Dugger, 2010, p. 115) denote the final stage of concept analysis as establishing empirical referents that identify or measure the defining characteristics. Additionally, empirical referents are described as “classes or categories of actual phenomena that by their existence or presence demonstrate the occurrence of the concept itself” (Walker & Avant, 2011, p. 168). Various methods can be utilized to identify or measure defining characteristics related to HRQoL. Measures of satisfaction or happiness can be used to assess HRQoL (Taylor et al., 2008). Additionally, statements from the person about feelings of satisfaction or dissatisfaction with HRQoL could also be employed. Moreover, instruments, such as those included in Appendix B, could be utilized to measure HRQoL. Van Der Vaart et al. argue that the use of instruments explicit to certain disease states are more sensitive to measuring specific aspects of HRQoL based on disease or condition versus a generic QoL tool (as cited in Dugger, 2010, p.115). In response to this statement, the author recommends the use of an instrument specific to patients with COPD. Several tools are available, as noted in Appendix B,
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to measure HRQoL in patients with moderate to severe COPD or obstructive respiratory disease. The SGRQ is a highly accepted and widely used tool to measure determinants of HRQoL, including symptoms, impacts, and activities affected by COPD (Jones et al., 1991). However, this tool does not address emotional function or coping skills of patients living with moderate to severe COPD. The SOLDQ is the only tool which measures three HRQoL dimensions— physical function, emotional function, and coping skills—as well as treatment satisfaction (Tu et al., 1997). Consequently, measurement of defining attributes would best be accomplished using the SOLDQ. Conclusion Implications for Practice Patients living with moderate to severe COPD experience life-altering and life-long disease process. Healthcare providers must understand that care of the patient with moderate to severe COPD includes individualized medical management and health education to meet the needs of the patient. Recognition that the overall goals in the treatment of individuals with COPD include addressing symptoms and improving quality of life should lead to awareness that all patients living with COPD should be assessed for HRQoL status. The results of HRQoL instruments, such as the SOLDQ, should be used to assess patients’ physical function, emotional function, coping skills, and treatment satisfaction. Based upon the results, practitioners can make informed, individualized plans of care that meet the patient’s physical and emotional needs and assist the patient in maximizing HRQoL. References Bergner, M., Bobbitt, R. A., Kressel, S., Pollard, W. E., Gilson, B. S., & Morris, J. R. (1976). The sickness impact profile: Conceptual formulation and methodology for the development of a health status measure. International Journal of Health Services, 6, 393–415. Bourbeau, J. (2004). Self-management interventions to improve outcomes in patients suffering from COPD. Expert Review of Pharmacoeconomics and Outcomes Research, 4(1), 71–77. Brooks, R. G., Jendteg, S., Lindgren, B., Persson, U., & Björk, S. (1991). EuroQol©: Health-related quality of life measurement. Results of the Swedish questionnaire exercise. Health Policy, 18, 37–48. Carone, M., Anghisi, F., & Donner, C. F. (1997). Quality of life and chronic respiratory failure. Monaldi Archives of Chest Disease, 52, 525–528. Centers for Disease Control and Prevention. (2012). Chronic obstructive pulmonary disease among adults-United States, 2011. Morbidity and Mortality Weekly Report, 61(46), 938–943. Chen, H., Taichman, D. B., & Doyle, R. L. (2008). Health-related quality of life and patient-reported outcomes in pulmonary arterial hypertension. Proceedings of the American Thoracic Society, 5(5), 623–630. Dugger, B. R. (2010). Health-related quality of life in nursing home residents with urinary incontinence. Urologic Nursing, 30(2), 112–118. Fan, V. S., Curtis, R., Tu, S., McDonell, M. B., & Fihn, S. D. (2002). Using quality of life to predict hospitalization and mortality in patients with obstructive lung disease. Chest, 122(2), 429–436. doi:10.1378/chest.122.2.429
Fletcher, C. M., Elmes, P. C., Fairbairn, M. B., & Wood, C. H. (1959). The significance of respiratory symptoms and the diagnosis of chronic bronchitis in a working population. British Medical Journal, 2, 257–266. Guyatt, G. H., Berman, L. B., Townsend, M., Pugsley, S. O., & Chambers, L. W. (1987). A measure of quality of life for clinical trial in chronic lung disease. Thorax, 42(10), 773–778. Habraken, J. M., Riet, G., Gore, J. M., Greenstone, M. A., Weersink, E. J. M., Bindels, P. J. E., & Willems, D. L. (2009). Health-related quality of life in end-stage COPD and lung cancer patients. Journal of Pain and Symptom Management, 37(6), 973–981. doi:0.1016/j.jpainsymman.2008.07.010 Harwood, R. H., Rogers, A., Dickinson, E., & Ebrahim, S. (1994). Measuring handicap: The London Handicap Scale, a new outcome measure for chronic disease. Quality Health Care, 3(1), 11–16. Hunt, S. M., McKenna, S. P., McEwen, J., Williams, J., & Papp, E. (1981). The Nottingham health profile: Subjective health status and medical consultations. Social Science and Medicine, 15(3), 221–229. Jones, P. W., Quirk, F. H., & Baveystock, C. M. (1991). The Saint George’s respiratory questionnaire. Respiratory Medicine, 85, 33–37. Jones, P. W., Quirk, F. H., & Baveystock, C. M. (1992). The Saint George’s respiratory questionnaire. Respiratory Medicine, 145(6), 1321–1327. Kaplan, R. M., Atkins, C. J., & Timms, R. (1984). Validity of a quality of well-being scale as an outcome measure in chronic obstructive pulmonary disease. Journal of Chronic Diseases, 37, 85–95. Kochanek, K. D., Xu, J., Murphy, S. L., Miniño, A. M., & Kung, H. (2011). Deaths: Final data for 2009. National Vital Statistics Reports, 60(3), 1–117. Maillé, A. R., Koning, C. J. M., Zwinderman, A. H., Willems, L. N. A., Dijkman, J. H., & Kaptein, A. A. (1997). The development of the “Quality-of-life for Respiratory Illness Questionnaire (QOL-RIQ)”: A disease-specific qualityof-life questionnaire for patients with mild to moderate chronic nonspecific lung disease. Respiratory Medicine, 91(5), 297–309. Moy, M. L., Reilly, J. J., Ries, A. L., Mosenifar, Z., Kaplan, R. M., Lew, R., & Garshick, E. (2009). Multivariate models of determinants of healthrelated quality of life in severe chronic obstructive pulmonary disease. Journal of Rehabilitation Research and Development, 46(5), 643–654. doi:10.1682/JRRD.2008.09.0127 National Information Center on Health Services Research and Health Care Technology. (2008). HTA 101: Glossary. Retrieved from http://www.nlm .nih.gov/nichsr/hta101/ta10104.html Sajid, M., Tonsi, A., & Baig, M. (2008). Health-related quality of life measurement. International Journal of Health Care Quality Assurance, 21(4), 365– 373. Sant’Anna, C. A., Stelmach, R., Feltrin, M. I., Filho, W. J., Chiba, T., & Cukier, A. (2003). Evaluation of health-related quality of life in low-income patients with COPD receiving long-term oxygen therapy. Chest, 123(1), 136–141. doi:10.1378/chest.123.1.136 Sloane, P. D., Zimmerman, S., Williams, C. S., Reed, P. S., Gill, K. S., & Preisser, J. S. (2005). Evaluating the quality of life of long-term care residents with dementia. The Gerontologist, 45(1), 37–49. Taylor, R. M., Gibson, F., & Franck, L. S. (2008). A concept analysis of healthrelated quality of life in young people with chronic illness. Journal of Clinical Nursing, 17, 1823–1833. doi:10.1111/j.1365-2702.2008.02379.x Tu, S. P., McDonell, M. B., Spertus, J. A., Steele, B. G., & Fihn, S. D. (1997). A new self-administered questionnaire to monitor health-related quality of life in patients with COPD. Chest, 112, 614–622. Walker, L. O., & Avant, K. C. (2011). Strategies for theory construction in nursing (5th ed.). Upper Saddle River, NJ: Prentice Hall. Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care, 30(6), 473–483. Wigal, J. K., Creer, T. L., & Kotses, H. (1991). The COPD self-efficacy scale. Chest, 99(5), 1193–1196. Wodchis, W. P., Hirdes, J. P., & Feeney, D. H. (2003). Health-related quality of life measure based on the Minimum Data Set. International Journal of Technology Assessment in Health Care, 19(3), 490–506. World Health Organization (WHO). (2008). The global burden of disease: 2004 update. Retrieved from http://www.who.int/healthinfo/ global_burden_disease/2004_report_update/en/ World Health Organization Quality of Life (WHOQOL) Group. (1997). WHOQOL measuring quality of life: The World Health Organization quality of life instruments. WHO/MSA/MNH/PSF/97.4. Wyman, J. F. (1998). Quality of life of older adults with urinary incontinence. Journal of the American Geriatrics Society, 46, 778–779.
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Theoretical definitions of quality of life
Source
“WHO defines quality of life as an individual’s perception of their position in life in the context of the culture and value systems in which they live, in relation to their goals, expectations, standards, and concerns. It is a broad-ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, and their relationships to salient features of the environment.” “. . . an abstract, subjective, multidimensional concept”. . .. “no universal definition.” Four domains of HRQoL include physical health, mental health, social health, and an encompassing sense of functional well-being. “The value assigned to duration of life as modified by the impairments, functional states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy.” “. . . only those aspects of quality of life that can be affected by health care interventions.” “The functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient.” “Health-related quality of life measures: patient outcome measures that extend beyond traditional measures of mortality and morbidity, to include such dimensions as physiology, function, social activity, cognition, emotion, sleep and rest, energy and vitality, health perception, and general life satisfaction.” “A multi-dimensional dynamic concept that has developed from the need to estimate the psychosocial impact of diseases, which include economic welfare, characteristics of community and environment, and health status.” “. . . an individual’s quality of life from his/her own subjective perspective, in contrast to the professional’s objective evaluation of the health status of the individual.” “QoL is a feeling of overall satisfaction, as determined by the mentally alert individual whose life is being evaluated. Other people, preferably those from outside that person’s living situation must also agree that the individual’s living conditions are not life threatening and are adequate in meeting that individual’s basic needs.” “. . . congruence or lack of congruence between the actual life conditions and one’s hopes and expectations. It is unique for each individual; it is dynamic, influenced by the various dimensions of an individual’s life” “QoL in the context of NSCLS is the impact of disease and/or treatment on the functional status, physical symptoms, affective state and interpersonal relationships, as evaluated by a person with cancer” “QoL is a multi-dimensional evaluation of an individual’s current life circumstances in the context of the culture in which they live and the values they hold. QoL is primarily a subjective sense of well-being encompassing physical, psychological, social and spiritual dimensions.” “Health-related quality of life (HRQL) is patient-centered and integrates the complex physiological and psychosocial effects of chronic obstructive pulmonary disease (COPD) on a person’s life.”
WHOQOL Group, 1997, p. 1
Wyman, 1998, p. 779 Wodchis, Hirdes, & Feeney, 2003, p. 491 Sloane et al., 2005, p. 37 Chen, Taichman, & Doyle, 2008, p. 623 National Information Center on Health Services Research and Health Care Technology, 2008 Sajid et al., 2008, p. 365 Sajid et al., 2008, p. 366 Meeberg, 1993, as cited in Taylor, Gibson, & Franck, 2008, p. 1825 McDaniel & Bach, 1994, as cited in Taylor, Gibson, & Franck, 2008, p. 1824 Cooley, 1998, as cited in Taylor, Gibson, & Franck, 2008, p. 1826 Haas, 1999, as cited in Taylor, Gibson, & Franck, 2008, p. 1827 Moy, Reilly, Ries, Mosenifar, Kaplan, Lew, & Garshick, 2009, p. 2
Appendix B Instrument abbreviation
Instrument name or description
Source
Chronic Obstructive Pulmonary Disease Self-Efficacy Scale (CSES) Chronic Respiratory Disease Questionnaire (CRDQ) EuroQol Quality of Life Scale-5D EQ-5D
34-item COPD Self-Efficacy Scale (CSES) to assess self-efficacy in individuals afflicted with COPD; a five-factor structure (negative affect, intense emotional arousal, physical exertion, weather/environmental, and behavioral risk factors). Interviewer administered. The questionnaire is 20 questions divided into four domains. Can also be self-administered.
Wigal, Creer, & Kotses, 1991
London Handicap Scale LHS
78
Internationally developed, generic index used to value and describe health states. The EQ-5D is a self-administered, two-part questionnaire. The first part contains a simple descriptive profile of health in five dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression). Classifies handicap according to disadvantages on six dimensions; mobility, physical independence, occupation, social integration, orientation, and economic self-sufficiency.
Guyatt, Berman, Townsend, Pugsley, & Chambers, 1987 Brooks, Jendteg, Lindgren, Persson, & Björk, 1991
Harwood, Rogers, Dickinson, & Ebrahim, 1994
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Appendix B Continued Instrument abbreviation
Instrument name or description
Source
Maugeri Foundation Respiratory Failure Questionnaire-28 Medical Outcomes Study Short-Form 36 The SF-36
Health-Related Quality of Life—HRQoL Assesses health status and physical functioning. Self-administered with 26 questions. 36-item, generic health survey created to assess health status. Items are organized into eight dimensions as follows: physical functioning, role limitations—physical, bodily pain, social functioning, general mental health, role limitations—emotional, vitality, and general health perceptions. Grades the effect of breathlessness on daily activities. The scale ranges from 1 to 5, where higher scores indicate worse daily functioning.
Carone, Anghisi, & Donner, 1997
Medical Research Council (MRC) Dyspnea Scale Nottingham Health Profile NHP
The Quality of Life for Respiratory Illness Questionnaire (QLRIQ) Saint George’s Respiratory Questionnaire (SGRQ) Seattle Obstructive Lung Disease Questionnaire (SOLDQ) Self-Administered Quality of-Well-Being Scale (QWB-SA) Sickness Impact Profile SIP
A brief, subjective measure of perceived health encompassing the social and personal effects of illness. Part I contains 38 items in six dimensions: physical mobility, pain, sleep, social isolation, emotional reactions, and energy level. Each item is a statement of a potential problem, which is either endorsed or rejected by the respondent. Uni-dimensional QOL questionnaire was constructed consisting of 55 items divided into seven domain subscales: breathing problems, physical problems, emotions, situations triggering or enhancing breathing problems, general activities, daily and domestic activities, and social activities, relationships and sexuality. Measure used to assess obstructive lung disease on HRQoL. Four domains: symptoms, impacts, activities, and a total score. Scores are transformed into percentage points; higher scores indicate a worse HRQOL. COPD-specific QOL measure; used frequently to evaluate the effects of pulmonary rehabilitation on HRQoL
Ware & Sherbourne, 1992
Fletcher, Elmes, Fairbairn, & Wood, 1959 Hunt, McKenna, McEwen, Williams, & Papp, 1981
Maillé, et al., 1997
Jones, Quirk, & Baveystock, 1992 Tu et al., 1997
Quality of Well-being Scale was originally designed for use as a general health outcome measure.
Kaplan, Atkins, & Timms, 1984
Comprehensive, behavior-based measure of perceived health status; scale consists of 136 items or statements about health-related dysfunction in 12 categories: sleep and rest, eating, work, home management, recreation and pastime, ambulation, mobility, body care and movement, social interaction, alertness/intellectual functioning, emotional behavior, and communication.
Bergner et al., 1976
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Health-Related Quality of Life in Patients With Moderate to Severe Chronic Obstructive Pulmonary Disease: A Concept Analysis April L. Mouser, RN, MSN, DNP April L. Mouser, RN, MSN, DNP, is Assistant Professor and Simulation Center Director, School of Nursing, Indiana University Kokomo, Kokomo, Indiana.
Search terms: Chronic obstructive pulmonary disease, concept analysis, health-related quality of life Author contact: [email protected], with a copy to the Editor: [email protected]
AIM: The purpose of this concept analysis is to examine the health-related quality of life in patients with moderate to severe chronic obstructive pulmonary disease (COPD). BACKGROUND: COPD is the third leading cause of death in the United States. Health-related quality of life (HRQoL) in patients with moderate to severe COPD has not been clearly defined. DESIGN: Walker and Avant’s concept analysis methodology was employed. REVIEW METHODS: The author examined articles focusing on QoL, HRQoL, and HRQoL in COPD. RESULTS: The concept analysis explores the negative consequences related to COPD while defining HRQoL and the characteristics of positive HRQoL. CONCLUSION: Patients living with COPD should be assessed for HRQoL status.
Chronic obstructive pulmonary disease (COPD) is a significant problem in the United States and in the world. In 2011, approximately 6.3% of U.S. citizens, an estimated 15 million people, were diagnosed with COPD (Centers for Disease Control and Prevention [CDC], 2012). COPD is also the third leading cause of death in the United States (Kochanek, Xu, Murphy, Miniño, & Kung, 2011). According to the World Health Organization (WHO), more than 3 million people died of COPD worldwide in 2005, a number equal to 5% of all deaths in that year (2008). Estimates show that COPD will become the third leading cause of death worldwide by 2030 (WHO, 2008). COPD is a disease state distinguished by airflow limitation that is not reversible (Bourbeau, 2004). Physical symptoms include cough, dyspnea, increased sputum production, and a progressive decline in functional capacity and health status (Bourbeau, 2004). COPD is noted to have a profound effect on the patient as well as the healthcare infrastructure (Bourbeau, 2004; CDC, 2012). Individuals living with COPD experience negative and distressing outcomes such as social isolation, dependency, depression, ineffective coping, dissatisfaction, and a feeling of helplessness (Fan, Curtis, Tu, McDonell, & Fihn, 2002; Habraken et al., 2009; Sant’Anna et al., 2003). These outcomes are also characteristics of a negative health-related quality of life (HRQoL). Health-related quality of life and quality of life (QoL) are both ill-defined concepts in the literature. The subjective nature of QoL and HRQoL presents a challenge when © 2013 NANDA International, Inc. International Journal of Nursing Knowledge Volume 25, No. 2, June 2014
defining the concepts. Each definition of HRQoL is specific to the disease process being assessed (Dugger, 2010; Taylor, Gibson, & Franck, 2008; Wyman, 1998). HRQoL, as a concept, is more narrowly defined than QoL due to the focus of health interventions on QoL (Sloane et al., 2005). HRQoL in patients with moderate to severe COPD has not been clearly defined.
Literature Review Theoretical Definitions of Health-Related Quality of Life An exhaustive literature review was conducted to assess the concept of HRQoL. The first search focused on articles defining quality of life since HRQoL is a derivative or related term. According to the World Health Organization Quality of Life (WHOQOL) Group: “WHO defines quality of life as an individual’s perception of their position in life in the context of the culture and value systems in which they live, in relation to their goals, expectations, standards, and concerns” (1997, p. 1). This work and definition of QoL are seminal in nature. The description is broad, while the concept is affected by the interrelationships of physical health, psychological state, independence, social engagement, and the environment (WHOQOL Group, 1997). Cooley argued from a social 73
Health-Related Quality of Life in Patients science perspective that QoL is the impact of the disease and treatments on the functional determinants of an individual (as cited in Taylor et al., 2008, p. 1826). Several other definitions of QoL were assessed during the literature review. Once a basic understanding of the parent concept, QoL, was established, searches focused on the definition and description of HRQoL. Wyman notes through work with adults experiencing urinary incontinence that HRQoL is an “abstract, subjective, multidimensional concept with no universal definition” (1998, p. 779). Similarly, Sloane et al. note that HRQoL is focused solely on “those aspects of quality of life that can be affected by health care interventions” (2005, p. 37). Clarification of the concept of quality of life was made in the field of medicine while working with nursing home patients living with dementia. While the focus of HRQoL is the effect of health interventions, other authors have identified the determinants associated with the definition of health-related quality of life. Wodchis, Hirdes, and Feeney define HRQoL as “the value assigned to duration of life as modified by the impairments, functional states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy” (2003, p. 491). HRQoL is specific to each disease state or condition. The theoretical definition most appropriate to the population of interest, patients with moderate to severe COPD, is derived from Moy et al. “Health-related quality of life is patient-centered and integrates the complex physiological and psychosocial effects of Chronic Obstructive Pulmonary Disease on a person’s life” (2009, p. 2). See Appendix A for a complete listing of theoretical definitions associated with QoL and HRQoL. Operational Definitions of Health-Related Quality of Life There are various instruments to measure or operationalize the concept of HRQoL. Eight tools are specific to HRQoL in relation to obstructive respiratory disease or COPD specifically. The St. George’s Respiratory Questionnaire (SGRQ) is a highly accepted and widely used tool to measure determinants of HRQoL, including symptoms, impacts, and activities affected by COPD (Jones, Quirk, & Baveystock, 1991). However, this tool does not address emotional function or coping skills of patients living with moderate to severe COPD. The Seattle Obstructive Lung Disease Questionnaire (SOLDQ) is the only tool which measures three HRQoL dimensions—physical function, emotional function, and coping skills—as well as treatment satisfaction (Tu, McDonell, Spertus, Steele, & Fihn, 1997). See Appendix A for a complete listing of operational definitions associated with QoL and HRQoL. Method of Concept Analysis The purpose of analyzing a concept of interest is to further define and clarify the concept in terms of the 74
A. L. Mouser phenomenon and population of study. Various methodologies exist which can be employed to complete the concept analysis. In this article, the author utilized the method of concept analysis developed by Walker and Avant (2011). This technique defines necessary components for a complete concept analysis. These elements include theoretical and operational definitions, defining attributes, antecedents, consequences, and empirical referents. Additionally, this method incorporates scrutinizing the use of the concept within cases to further define and illustrate the concept in practice. Defining attributes are described by Walker and Avant as recurring characteristics found within the literature that define the concept. Antecedents are “events or incidents that must occur prior to the occurrence of the concept” (Walker & Avant, 2011, p. 167). Conversely, consequences are “those events or incidents that occur as a result of the occurrence of the concept” (Walker & Avant, 2011, p. 167). Finally, empirical referents are the presence of phenomena that validates the incidence of the concept itself (Walker & Avant, 2011). The visual representation of HRQoL in patients with moderate to severe COPD is provided in Figure 1. The process of concept analysis leads to a deeper meaning and recognition of the impact of the concept within clinical practice. This can include improved assessment and intervention on the part of patients and families. Concept analysis is an integral part of advancing evidencebased practice in nursing today. Walker and Avant (as cited in Dugger, 2010, p. 113) emphasize, “The only way we will be able to demonstrate the evidence base for our practice is to be able to first describe the phenomena in a measurable or at least communicable way.” An assortment of databases was employed during the literature search concerning the concept analysis. These databases include Proquest Health and Medical Complete, MEDLINE, CINAHL, and Google Scholar. The author examined articles focusing on QoL, HRQoL, and HRQoL of patients with COPD. Articles were reviewed from the past 10 years to capture the historical perspective of HRQoL in patients with moderate to severe COPD. Several outstanding articles from 2003 were included. Except for earlier decisive and seminal works focused on tool development that measure and define HRQoL, articles prior to 2002 were eliminated in an effort focus on the most recent literature. Concept Analysis Defining Attributes Defining attributes are described by Walker and Avant (2011) as recurring themes found within the literature that distinguishes the concept and are also known as “the heart of concept analysis” (p.162). Taylor, Gibson, and Franck describe the defining attributes of HRQoL as subjective, multidimensional, dynamic, and are affected by the achievement of goals or aspirations and the constraints of ill health and treatment (2008).
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Figure 1. Concept Analysis of Health-Related Quality of Life (HRQoL) in Moderate to Severe Chronic Obstructive Pulmonary Disease (COPD)
Persisting themes found within the literature in regards to negative HRQoL in patients with moderate to severe COPD include social isolation, dependency, depression, ineffective coping, dissatisfaction, and feelings of helplessness (Fan et al., 2002; Habraken et al., 2009; Sant’Anna et al., 2003). In contrast, the defining attributes of a positive HRQoL include increased social engagement, increased independence, decreased depression, satisfaction and acceptance of one’s circumstances, effective coping and adaptation to circumstances, and self-efficacy (Taylor et al., 2008). The author utilized themes found in the literature, SOLDQ, SGRQ, and theoretical definitions to identify the defining characteristics of HRQoL in patients with moderate to severe COPD. Cases Model case. According to Walker and Avant (2011, p. 163), a model case is “an example of the use of the
concept that demonstrates all the defining attributes of the concept.” They additionally note that the model case is a “pure case of the concept” (p. 163). The following cases were created by the author and include fictitious names, locations, and situations. The following is a model case for the concept HRQoL in patients with moderate to severe COPD that are properly assessed and treated. Mrs. Jones was diagnosed with moderate COPD for 3 years. When she was first diagnosed, Mrs. Jones was seen by her primary care physician and was treated without her input. After 1 year with this care, Mrs. Jones was referred to a recommended pulmonologist in the area. She was placed on appropriate pharmacologic treatment, referred to pulmonary rehabilitation, and given health education to assist her in managing her COPD at home. After the first month of treatment, Mrs. Jones was asked to assess her physical function, emotional function, coping skills, and treatment satisfaction. The pulmonologist and nurse reviewed the results of the survey with Mrs. 75
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Jones. With her input, the treatment plan was adjusted to meet Mrs. Jones’ needs. Mrs. Jones said, “When I was first diagnosed, I didn’t know how to help myself. I felt helpless. I never left home out of fear that I would become short of breath or run out of oxygen. I felt so dependent on others. I was depressed and did not know if I could go on.” She indicated that now she not only knows how to manage her COPD, but she feels satisfied with her circumstances. She notes, “I know I can’t get rid of the COPD, but now I feel like I’m in control of my breathing and my treatment. That means the world to me.” She now is involved in several community groups, including the chair exercises at the senior citizen center. She even volunteers to assist with delivering meals to men and women in her community. This case includes all the defining attributes of positive HRQoL, including social engagement, increased independence, effective coping, satisfaction, and acceptance of one’s circumstances.
anxiety regarding her dyspnea, Ms. Lee is taking more than the recommended dosage of lorazepam to induce sleep. When Ms. Lee is questioned about her health condition, she states, “This is no way to live. I can’t breathe. I can’t bathe. I can’t do anything on my own. I have no life. I wish I would just die.” In this case, none of the defining attributes of positive HRQoL were present.
Borderline case. The borderline case is defined as the instance that contains “most of the defining attributes of the concept being examined but not all of them” (Walker & Avant, 2011, p.164). Walker and Avant additionally note that these cases are “inconsistent in some way from the concept under consideration” (2011, p. 164). Mr. Fife’s story is an example of a borderline case for the concept HRQoL in patients with moderate to severe COPD that are properly assessed and treated. Mr. Fife was diagnosed with severe COPD 3 years ago. He lives with his son. His son takes Mr. Fife to his pulmonologist who treats COPD with the appropriate pharmacologic treatments. While his son notes that his COPD does not seem to hinder Mr. Fife’s physical function, Mr. Fife is unable to express feelings related to treatment of his COPD due to significant cognitive impairment. Mr. Fife is active at the senior citizen center and adult day care he attends. His son notes that Mr. Fife also laughs and appears content. This case shows Mr. Fife socially engaged, content, and as independent as his medical diagnosis allows; however, he is unable to identify and articulate his experience of an enhanced HRQoL.
Consequences. Consequences are “those events or incidents that occur as a result of the occurrence of the concept” (Walker & Avant, 2011, p. 167). For individuals living with COPD, negative and distressing outcomes can be experienced, including social isolation, dependency, depression, ineffective coping, dissatisfaction, and feelings of helplessness (Fan et al., 2002; Habraken et al., 2009; Sant’Anna et al., 2003). A patient with positive HRQoL typically experiences increased independence, social engagement, and satisfaction with and acceptance of one’s circumstances. In the case of HRQoL in patients experiencing moderate to severe COPD, the defining attributes and consequences are identical.
Contrary case. The contrary case is described by Walker and Avant as a “clear example of ‘not the concept’ ” (2011, p. 166). An example of a contrary case for the concept HRQoL in patients with moderate to severe COPD that are properly assessed and treated involves Ms. Lee. Ms. Lee was diagnosed with severe COPD 1 year ago. She was treated by her primary care physician during this period. She was placed on long-term oxygen therapy but with no additional pharmacologic treatment. Additionally, she was not educated regarding self-management of COPD. Ms. Lee has dyspnea that is severe at rest and with exertion. Due to this dyspnea, Ms. Lee refused to leave her home over the last 6 months. She was admitted to the hospital eight times in the last 6 months, which left her feeling depressed and helpless. She depends on her daughter for all of her needs, including cooking and bathing. In an effort to cope with her 76
Variables Antecedents. Walker and Avant describe antecedents as “events or incidents that must occur or be in place prior to the occurrence of the concept” (2011, p. 167). The antecedents for the concept of HRQoL in patients with moderate to severe COPD include a diagnosis of moderate to severe COPD, ability to evaluate one’s life, ability to identify the perception of quality of life, and the ability to make a decision about one’s quality of life (Taylor et al., 2008).
Empirical Referents Walker and Avant (as cited in Dugger, 2010, p. 115) denote the final stage of concept analysis as establishing empirical referents that identify or measure the defining characteristics. Additionally, empirical referents are described as “classes or categories of actual phenomena that by their existence or presence demonstrate the occurrence of the concept itself” (Walker & Avant, 2011, p. 168). Various methods can be utilized to identify or measure defining characteristics related to HRQoL. Measures of satisfaction or happiness can be used to assess HRQoL (Taylor et al., 2008). Additionally, statements from the person about feelings of satisfaction or dissatisfaction with HRQoL could also be employed. Moreover, instruments, such as those included in Appendix B, could be utilized to measure HRQoL. Van Der Vaart et al. argue that the use of instruments explicit to certain disease states are more sensitive to measuring specific aspects of HRQoL based on disease or condition versus a generic QoL tool (as cited in Dugger, 2010, p.115). In response to this statement, the author recommends the use of an instrument specific to patients with COPD. Several tools are available, as noted in Appendix B,
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to measure HRQoL in patients with moderate to severe COPD or obstructive respiratory disease. The SGRQ is a highly accepted and widely used tool to measure determinants of HRQoL, including symptoms, impacts, and activities affected by COPD (Jones et al., 1991). However, this tool does not address emotional function or coping skills of patients living with moderate to severe COPD. The SOLDQ is the only tool which measures three HRQoL dimensions— physical function, emotional function, and coping skills—as well as treatment satisfaction (Tu et al., 1997). Consequently, measurement of defining attributes would best be accomplished using the SOLDQ. Conclusion Implications for Practice Patients living with moderate to severe COPD experience life-altering and life-long disease process. Healthcare providers must understand that care of the patient with moderate to severe COPD includes individualized medical management and health education to meet the needs of the patient. Recognition that the overall goals in the treatment of individuals with COPD include addressing symptoms and improving quality of life should lead to awareness that all patients living with COPD should be assessed for HRQoL status. The results of HRQoL instruments, such as the SOLDQ, should be used to assess patients’ physical function, emotional function, coping skills, and treatment satisfaction. Based upon the results, practitioners can make informed, individualized plans of care that meet the patient’s physical and emotional needs and assist the patient in maximizing HRQoL. References Bergner, M., Bobbitt, R. A., Kressel, S., Pollard, W. E., Gilson, B. S., & Morris, J. R. (1976). The sickness impact profile: Conceptual formulation and methodology for the development of a health status measure. International Journal of Health Services, 6, 393–415. Bourbeau, J. (2004). Self-management interventions to improve outcomes in patients suffering from COPD. Expert Review of Pharmacoeconomics and Outcomes Research, 4(1), 71–77. Brooks, R. G., Jendteg, S., Lindgren, B., Persson, U., & Björk, S. (1991). EuroQol©: Health-related quality of life measurement. Results of the Swedish questionnaire exercise. Health Policy, 18, 37–48. Carone, M., Anghisi, F., & Donner, C. F. (1997). Quality of life and chronic respiratory failure. Monaldi Archives of Chest Disease, 52, 525–528. Centers for Disease Control and Prevention. (2012). Chronic obstructive pulmonary disease among adults-United States, 2011. Morbidity and Mortality Weekly Report, 61(46), 938–943. Chen, H., Taichman, D. B., & Doyle, R. L. (2008). Health-related quality of life and patient-reported outcomes in pulmonary arterial hypertension. Proceedings of the American Thoracic Society, 5(5), 623–630. Dugger, B. R. (2010). Health-related quality of life in nursing home residents with urinary incontinence. Urologic Nursing, 30(2), 112–118. Fan, V. S., Curtis, R., Tu, S., McDonell, M. B., & Fihn, S. D. (2002). Using quality of life to predict hospitalization and mortality in patients with obstructive lung disease. Chest, 122(2), 429–436. doi:10.1378/chest.122.2.429
Fletcher, C. M., Elmes, P. C., Fairbairn, M. B., & Wood, C. H. (1959). The significance of respiratory symptoms and the diagnosis of chronic bronchitis in a working population. British Medical Journal, 2, 257–266. Guyatt, G. H., Berman, L. B., Townsend, M., Pugsley, S. O., & Chambers, L. W. (1987). A measure of quality of life for clinical trial in chronic lung disease. Thorax, 42(10), 773–778. Habraken, J. M., Riet, G., Gore, J. M., Greenstone, M. A., Weersink, E. J. M., Bindels, P. J. E., & Willems, D. L. (2009). Health-related quality of life in end-stage COPD and lung cancer patients. Journal of Pain and Symptom Management, 37(6), 973–981. doi:0.1016/j.jpainsymman.2008.07.010 Harwood, R. H., Rogers, A., Dickinson, E., & Ebrahim, S. (1994). Measuring handicap: The London Handicap Scale, a new outcome measure for chronic disease. Quality Health Care, 3(1), 11–16. Hunt, S. M., McKenna, S. P., McEwen, J., Williams, J., & Papp, E. (1981). The Nottingham health profile: Subjective health status and medical consultations. Social Science and Medicine, 15(3), 221–229. Jones, P. W., Quirk, F. H., & Baveystock, C. M. (1991). The Saint George’s respiratory questionnaire. Respiratory Medicine, 85, 33–37. Jones, P. W., Quirk, F. H., & Baveystock, C. M. (1992). The Saint George’s respiratory questionnaire. Respiratory Medicine, 145(6), 1321–1327. Kaplan, R. M., Atkins, C. J., & Timms, R. (1984). Validity of a quality of well-being scale as an outcome measure in chronic obstructive pulmonary disease. Journal of Chronic Diseases, 37, 85–95. Kochanek, K. D., Xu, J., Murphy, S. L., Miniño, A. M., & Kung, H. (2011). Deaths: Final data for 2009. National Vital Statistics Reports, 60(3), 1–117. Maillé, A. R., Koning, C. J. M., Zwinderman, A. H., Willems, L. N. A., Dijkman, J. H., & Kaptein, A. A. (1997). The development of the “Quality-of-life for Respiratory Illness Questionnaire (QOL-RIQ)”: A disease-specific qualityof-life questionnaire for patients with mild to moderate chronic nonspecific lung disease. Respiratory Medicine, 91(5), 297–309. Moy, M. L., Reilly, J. J., Ries, A. L., Mosenifar, Z., Kaplan, R. M., Lew, R., & Garshick, E. (2009). Multivariate models of determinants of healthrelated quality of life in severe chronic obstructive pulmonary disease. Journal of Rehabilitation Research and Development, 46(5), 643–654. doi:10.1682/JRRD.2008.09.0127 National Information Center on Health Services Research and Health Care Technology. (2008). HTA 101: Glossary. Retrieved from http://www.nlm .nih.gov/nichsr/hta101/ta10104.html Sajid, M., Tonsi, A., & Baig, M. (2008). Health-related quality of life measurement. International Journal of Health Care Quality Assurance, 21(4), 365– 373. Sant’Anna, C. A., Stelmach, R., Feltrin, M. I., Filho, W. J., Chiba, T., & Cukier, A. (2003). Evaluation of health-related quality of life in low-income patients with COPD receiving long-term oxygen therapy. Chest, 123(1), 136–141. doi:10.1378/chest.123.1.136 Sloane, P. D., Zimmerman, S., Williams, C. S., Reed, P. S., Gill, K. S., & Preisser, J. S. (2005). Evaluating the quality of life of long-term care residents with dementia. The Gerontologist, 45(1), 37–49. Taylor, R. M., Gibson, F., & Franck, L. S. (2008). A concept analysis of healthrelated quality of life in young people with chronic illness. Journal of Clinical Nursing, 17, 1823–1833. doi:10.1111/j.1365-2702.2008.02379.x Tu, S. P., McDonell, M. B., Spertus, J. A., Steele, B. G., & Fihn, S. D. (1997). A new self-administered questionnaire to monitor health-related quality of life in patients with COPD. Chest, 112, 614–622. Walker, L. O., & Avant, K. C. (2011). Strategies for theory construction in nursing (5th ed.). Upper Saddle River, NJ: Prentice Hall. Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care, 30(6), 473–483. Wigal, J. K., Creer, T. L., & Kotses, H. (1991). The COPD self-efficacy scale. Chest, 99(5), 1193–1196. Wodchis, W. P., Hirdes, J. P., & Feeney, D. H. (2003). Health-related quality of life measure based on the Minimum Data Set. International Journal of Technology Assessment in Health Care, 19(3), 490–506. World Health Organization (WHO). (2008). The global burden of disease: 2004 update. Retrieved from http://www.who.int/healthinfo/ global_burden_disease/2004_report_update/en/ World Health Organization Quality of Life (WHOQOL) Group. (1997). WHOQOL measuring quality of life: The World Health Organization quality of life instruments. WHO/MSA/MNH/PSF/97.4. Wyman, J. F. (1998). Quality of life of older adults with urinary incontinence. Journal of the American Geriatrics Society, 46, 778–779.
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Theoretical definitions of quality of life
Source
“WHO defines quality of life as an individual’s perception of their position in life in the context of the culture and value systems in which they live, in relation to their goals, expectations, standards, and concerns. It is a broad-ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, and their relationships to salient features of the environment.” “. . . an abstract, subjective, multidimensional concept”. . .. “no universal definition.” Four domains of HRQoL include physical health, mental health, social health, and an encompassing sense of functional well-being. “The value assigned to duration of life as modified by the impairments, functional states, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy.” “. . . only those aspects of quality of life that can be affected by health care interventions.” “The functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient.” “Health-related quality of life measures: patient outcome measures that extend beyond traditional measures of mortality and morbidity, to include such dimensions as physiology, function, social activity, cognition, emotion, sleep and rest, energy and vitality, health perception, and general life satisfaction.” “A multi-dimensional dynamic concept that has developed from the need to estimate the psychosocial impact of diseases, which include economic welfare, characteristics of community and environment, and health status.” “. . . an individual’s quality of life from his/her own subjective perspective, in contrast to the professional’s objective evaluation of the health status of the individual.” “QoL is a feeling of overall satisfaction, as determined by the mentally alert individual whose life is being evaluated. Other people, preferably those from outside that person’s living situation must also agree that the individual’s living conditions are not life threatening and are adequate in meeting that individual’s basic needs.” “. . . congruence or lack of congruence between the actual life conditions and one’s hopes and expectations. It is unique for each individual; it is dynamic, influenced by the various dimensions of an individual’s life” “QoL in the context of NSCLS is the impact of disease and/or treatment on the functional status, physical symptoms, affective state and interpersonal relationships, as evaluated by a person with cancer” “QoL is a multi-dimensional evaluation of an individual’s current life circumstances in the context of the culture in which they live and the values they hold. QoL is primarily a subjective sense of well-being encompassing physical, psychological, social and spiritual dimensions.” “Health-related quality of life (HRQL) is patient-centered and integrates the complex physiological and psychosocial effects of chronic obstructive pulmonary disease (COPD) on a person’s life.”
WHOQOL Group, 1997, p. 1
Wyman, 1998, p. 779 Wodchis, Hirdes, & Feeney, 2003, p. 491 Sloane et al., 2005, p. 37 Chen, Taichman, & Doyle, 2008, p. 623 National Information Center on Health Services Research and Health Care Technology, 2008 Sajid et al., 2008, p. 365 Sajid et al., 2008, p. 366 Meeberg, 1993, as cited in Taylor, Gibson, & Franck, 2008, p. 1825 McDaniel & Bach, 1994, as cited in Taylor, Gibson, & Franck, 2008, p. 1824 Cooley, 1998, as cited in Taylor, Gibson, & Franck, 2008, p. 1826 Haas, 1999, as cited in Taylor, Gibson, & Franck, 2008, p. 1827 Moy, Reilly, Ries, Mosenifar, Kaplan, Lew, & Garshick, 2009, p. 2
Appendix B Instrument abbreviation
Instrument name or description
Source
Chronic Obstructive Pulmonary Disease Self-Efficacy Scale (CSES) Chronic Respiratory Disease Questionnaire (CRDQ) EuroQol Quality of Life Scale-5D EQ-5D
34-item COPD Self-Efficacy Scale (CSES) to assess self-efficacy in individuals afflicted with COPD; a five-factor structure (negative affect, intense emotional arousal, physical exertion, weather/environmental, and behavioral risk factors). Interviewer administered. The questionnaire is 20 questions divided into four domains. Can also be self-administered.
Wigal, Creer, & Kotses, 1991
London Handicap Scale LHS
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Internationally developed, generic index used to value and describe health states. The EQ-5D is a self-administered, two-part questionnaire. The first part contains a simple descriptive profile of health in five dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression). Classifies handicap according to disadvantages on six dimensions; mobility, physical independence, occupation, social integration, orientation, and economic self-sufficiency.
Guyatt, Berman, Townsend, Pugsley, & Chambers, 1987 Brooks, Jendteg, Lindgren, Persson, & Björk, 1991
Harwood, Rogers, Dickinson, & Ebrahim, 1994
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Appendix B Continued Instrument abbreviation
Instrument name or description
Source
Maugeri Foundation Respiratory Failure Questionnaire-28 Medical Outcomes Study Short-Form 36 The SF-36
Health-Related Quality of Life—HRQoL Assesses health status and physical functioning. Self-administered with 26 questions. 36-item, generic health survey created to assess health status. Items are organized into eight dimensions as follows: physical functioning, role limitations—physical, bodily pain, social functioning, general mental health, role limitations—emotional, vitality, and general health perceptions. Grades the effect of breathlessness on daily activities. The scale ranges from 1 to 5, where higher scores indicate worse daily functioning.
Carone, Anghisi, & Donner, 1997
Medical Research Council (MRC) Dyspnea Scale Nottingham Health Profile NHP
The Quality of Life for Respiratory Illness Questionnaire (QLRIQ) Saint George’s Respiratory Questionnaire (SGRQ) Seattle Obstructive Lung Disease Questionnaire (SOLDQ) Self-Administered Quality of-Well-Being Scale (QWB-SA) Sickness Impact Profile SIP
A brief, subjective measure of perceived health encompassing the social and personal effects of illness. Part I contains 38 items in six dimensions: physical mobility, pain, sleep, social isolation, emotional reactions, and energy level. Each item is a statement of a potential problem, which is either endorsed or rejected by the respondent. Uni-dimensional QOL questionnaire was constructed consisting of 55 items divided into seven domain subscales: breathing problems, physical problems, emotions, situations triggering or enhancing breathing problems, general activities, daily and domestic activities, and social activities, relationships and sexuality. Measure used to assess obstructive lung disease on HRQoL. Four domains: symptoms, impacts, activities, and a total score. Scores are transformed into percentage points; higher scores indicate a worse HRQOL. COPD-specific QOL measure; used frequently to evaluate the effects of pulmonary rehabilitation on HRQoL
Ware & Sherbourne, 1992
Fletcher, Elmes, Fairbairn, & Wood, 1959 Hunt, McKenna, McEwen, Williams, & Papp, 1981
Maillé, et al., 1997
Jones, Quirk, & Baveystock, 1992 Tu et al., 1997
Quality of Well-being Scale was originally designed for use as a general health outcome measure.
Kaplan, Atkins, & Timms, 1984
Comprehensive, behavior-based measure of perceived health status; scale consists of 136 items or statements about health-related dysfunction in 12 categories: sleep and rest, eating, work, home management, recreation and pastime, ambulation, mobility, body care and movement, social interaction, alertness/intellectual functioning, emotional behavior, and communication.
Bergner et al., 1976
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