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Title:
The relationships among pain, dyspnea and constipation to quality of life in lung cancer patients enrolled in a hospice program
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English
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Laches, Lisa A
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University of South Florida
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End stage lung cancer
Hospice patients
Symptom management
Symptom distress
Symptom intensity
Dissertations, Academic -- Nursing -- Masters -- USF   ( lcsh )
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bibliography   ( marcgt )
theses   ( marcgt )
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Abstract:
ABSTRACT: There is evidence of a relationship between pain and associated symptoms, specifically constipation and dyspnea, and quality of life. Literature supports that endstage lung cancer patients suffer more symptoms than those with other types of cancers, and the course of treatment is primarily palliative, as many of these diagnosed patients cannot be cured. The purpose of this secondary analysis of data was to evaluate the relationships between pain and other common symptoms in end stage lung cancer patients in hospice care, and the relationships among pain, dyspnea, constipation and quality of life. The study sample included fifty lung cancer patients admitted to a hospice program, reporting pain. A series of Pearson's correlations were used to analyze relationships between the variables pain intensity, pain distress, dyspnea intensity, dyspnea distress, constipation intensity and the relationships of these variables with quality of life. The results showed positive significant correlations between pain intensity and pain distress (r = .44, p = .002), dyspnea intensity and dyspnea distress (r = .47, p = .001), and constipation intensity and quality of life (r = -.57, p = .013). Pain and the relief of pain have been studied extensively in cancer patients, yet little research has been done in the way of side effects of opioid use, specifically constipation. This study reinforces to nursing the importance of a thorough assessment upon admission to hospice, and at each subsequent nursing visit, which includes a bowel habit history, current medications in use, potential risk for developing constipation and management of constipation once it is present. Hospice patients with lung cancer are reporting a decrease in quality of life secondary to constipation. Prevention or rapid alleviation of this symptom will provide comfort and allow the patient to focus on important end of life tasks.
Thesis:
Thesis (M.S.)--University of South Florida, 2007.
Bibliography:
Includes bibliographical references.
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by Lisa A. Laches.
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usfldc doi - E14-SFE0002121
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The Relationships Among Pain, Dyspnea, Constipation an d Quality of Life in Lung Cancer Patients Enrolled in a Hospice Program by Lisa A. Laches A thesis submitted in partial fulfillment of the requirements for the degree of Masters of Science College of Nursing University of South Florida Major Professor: Susan C. McMillan, Ph.D., ARNP Joan Gregory, Ph.D., ARNP Janine Overcash, Ph.D., ARNP Date of Approval: July 5, 2007 Keywords: end stage lung cancer, hospice patients, sympto m management, symptom distress, symptom intensity Copyright 2007, Lisa A. Laches

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ii Table of Contents List of Tables iv Abstract v Chapter I Introduction 1 Problem Statement 2 Research Objectives 3 Definitions of Terms 3 Significance to Nursing 4 Chapter II Review of Literature 5 Conceptual Framework 5 Literature Review 6 Pain 6 Other Symptoms 8 Symptom Distress 12 Quality of Life 18 Summary 21 Chapter III Methods 22 Sample and Setting 22 Inclusion Criteria 22 Exclusion Criteria 23 Instruments 23 Short Portable Mental Status Questionnaire 23 Demographic Data Form 23 Karnofsky Performance Scale 23 Pain Numeric Rating Scale 24 Dyspnea Intensity Scale 24 Constipation Assessment Scale 24 Memorial Symptom Assessment Scale 24 Hospice Quality of Life Index 25 Procedures 25 Data Analysis 26

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iii Chapter IV Results, Discussion and Conclusions 27 Results 27 Demographic Data 27 Incidence and Intensity of Pain, Constipation and Dyspn ea 27 Relationships Among Variables 29 Pain Intensity and Pain Distress 29 Pain Intensity and Dyspnea Distress 29 Pain Distress and Dyspnea Intensity 29 Pain Distress and Constipation Intensity 29 Relationships with Quality of Life 30 Pain Intensity and Quality of Life 30 Pain Distress and Quality of Life 30 Dyspnea Intensity and Quality of Life 30 Dyspnea Distress and Quality of Life 31 Constipation Intensity and Quality of Life 31 Discussion 32 Demographic Data 32 Incidence and Intensity of Pain, Constipation and Dyspnea 32 Relationships Among Variables 33 Pain Intensity and Pain Distress 33 Pain Intensity and Dyspnea Distress 34 Pain Distress and Dyspnea Intensity 34 Pain Distress and Constipation Intensity 34 Relationships with Quality of Life 35 Pain Intensity and Quality of Life 35 Pain Distress and Quality of Life 35 Dyspnea Intensity and Quality of Life 35 Dyspnea Distress and Quality of Life 36 Constipation Intensity and Quality of Life 36 Implications for Nursing 36 Recommendations for Further Research 37 Conclusions 37 References 38 Appendices 44 Appendix A: Short Portable Mental Status Questionnaire 45 Appendix B: Karnofsky Performance Status Scale 46 Appendix C: Pain Numeric Rating Scale 47 Appendix D: Dysnea Graphic Intensity Scale 48 Appendix E: Hospice Quality of Life Index – Revised 1998 49

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iv List of Tables Table 1 Frequency and Percentage of Patients by Sex, Rac e, Marital Status 28 and Education Table 2 Ranges, Means and Standard Deviations (SD) for th e NRS, CAS, MSAS 30 and DGRIS Table 3 Pearson Correlations Among Pain Intensity an d Pain Distress 31 Variables, from the NRS, CAS, MSAS, and HQLI Scale s

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v The Relationships Among Pain, Dyspnea, Constipation an d Quality of Life in Lung Cancer Patients Enrolled in a Hospice Program Lisa A. Laches ABSTRACT There is evidence of a relationship between pain and ass ociated symptoms, specifically constipation and dyspnea, and quality of lif e. Literature supports that endstage lung cancer patients suffer more symptoms than th ose with other types of cancers, and the course of treatment is primarily palliative, as many of these diagnosed patients cannot be cured. The purpose of this secondary analysis of data was to evaluate the relationships between pain and other common symptoms in en d stage lung cancer patients in hospice care, and the relationships among pain, dysp nea, constipation and quality of life. The study sample included fifty lung cancer patien ts admitted to a hospice program, reporting pain. A series of Pearson’s correlations wer e used to analyze relationships between the variables pain intensity, pain distress, dy spnea intensity, dyspnea distress, constipation intensity and the relationships of these variables with quality of life. The results showed positive significant correlations between pain intensity and pain distress (r = .44, p = .002), dyspnea intensity and dyspnea distress ( r = .47, p = .001), and constipation intensity and quality of life (r = -.57, p = .013). Pain and the relief of pain have been studied extensively in cancer patients, yet l ittle research has been done in the way of side effects of opioid use, specifically constipat ion. This study reinforces to

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vi nursing the importance of a thorough assessment upon admiss ion to hospice, and at each subsequent nursing visit, which includes a bowel habit history, cur rent medications in use, potential risk for developing constipation and management of constipation once it is present. Hospice patients with lung cancer are reporting a decre ase in quality of life secondary to constipation. Prevention or rapid alleviat ion of this symptom will provide comfort and allow the patient to focus on important end o f life tasks.

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1 Chapter I Introduction Lung cancer is the leading cause of cancer death for both men and women, and is the most common malignancy worldwide (Potter & Higgins on, 2003). The American Cancer Society (ACS) reports that for the year 2007 the re will be about 213,380 new cases of lung cancer in the United States: 114,760 among men and 98,620 among women. About 160,390 people will die of this disease including 89,510 men and 70,380 women. About six out of ten people with lung cancer die within one year of being diagnosed. Between seven and eight out of ten will die within tw o years (ACS, 2007). The healthcare industry serves a large number of lung cancer patients, in either the curative or palliative phase of treatment. The ability to properly as sess, treat and manage pain and disease related symptoms is a crucial component to quality of life improvement. Medical advances such as chemotherapy, radiation the rapy and surgery have provided better tumor response rates, but have demonstrated little effect in overall survival (Knop, 2005). The fact that the majority of lung cancer patients pre sent with advanced stages of disease and receive palliative or hospic e care despite curative treatment options, demonstrates the importance of sym ptom relief (Potter et al., 2003; Cooley, 2000). Many patients newly diagnosed with lung cancer presen t with advanced disease, and have more symptoms than patients who are newly dia gnosed with other types of

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2 cancer (Gift, Jablonski, Stommel & Given, 2004). Uncontro lled pain and the multiple symptoms associated with lung cancer complicate a term inal prognosis. It is distressing for family members to conceptualize suffering and symptom s associated with pain can prevent patients from enjoying acceptable levels of quality i n the remaining months of life (Lobchuk, Degner, Chateau & Hewitt, 2006; McMillan & Weitz ner, 2000). Prevalence of pain in end-stage lung cancer patients ranges from forty to ninety percent, and can be caused by the cancer itself or as a result of the thera pies used to treat or palliate the disease process (Knop, 2005). Pain is one of the most fe ared symptoms of a lung cancer diagnosis (Potter, Hami, Bryan & Quiqley, 2003). The no table predominance of palliation versus cure of lung cancer disease demonstrat es the need for symptom management to be a priority (Potter et al., 2003; Tishelman, Degner, Rudman, Bertilsson, Bond, & Broberger, et al., 2005). Problem statement While there has been a great deal of research investi gating single signs and symptoms, such as pain or dyspnea, there is little res earch regarding assessment and management of concurrent symptoms associated with pain i n end stage lung cancer. Symptoms that occur concurrently with pain in lung cancer are often not recognized or assessed. This may be due to barriers created by both the healthcare system and the patients themselves (Paice, 2004). By identifying these sympt oms, the provider can thoroughly assess general health status, and plan a course of treatment. Concurrent symptoms can have an adverse effect on patient outcom es and an overall decrease in quality of life (Dodd, Miaskowski & Paul, 2001). Therefore, it is critical for a complete assessment to incorporate all limitations and concerns. The purpose of this study was to

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3 evaluate the relationships between pain and other common symptoms in end stage lung cancer patients in hospice care, and the relationships b etween pain, dyspnea and constipation on quality of life. Research Objectives The following objectives will guide the study: 1. To identify the incidence and intensity of pain and s ymptoms related to pain, specifically, constipation and dyspnea, in a sample of hospice patients with end stage lung cancer. 2. To examine the relationships between pain intensity a nd the following variables: pain distress, and dyspnea distress in a sample of hospic e patients with end stage lung cancer. 3. To examine the relationships between pain distress an d the following variables: pain intensity, dyspnea intensity and constipation intensity 4. To examine the relationships between total quality of life scores and the following variables: pain intensity, pain distress, dyspnea int ensity, dyspnea distress, and constipation intensity in a sample of hospice patient s with end stage lung cancer. Definition of Terms For purposes of this study, the following terms are defined: 1. Pain is defined as nociceptive, by referring to somatic or vis ceral pain, or neuropathic, relating to peripheral or central nerve damage. Approxima tely sixty percent of lung cancer patients experience nociceptive pain, while thirty percent report neuropathic pain (Wilkie, Huang, Reilly & Cain, 2001). 2. Dyspnea is one of the most common subjectively perceived symptom s of advanced cancer, and is defined as an “uncomfortable sensation of b reathing” (Manning &

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4 Schwartzstein, 1995). There are multiple contributing fac tors to this subjective sensation such as previous life experience, cultural backgr ound, and psychological state, all which can increase or decrease the perception of dyspnea (Ripamonti & Bruera, 1997). 3. Constipation is defined as a decreased frequency in the passage of form ed stools, and is further characterized by hard stools that are difficul t to pass (McMillan, 2002). 4. Quality of life is defined as a multifaceted concept, comprised of various dimensions that make life worth living (McMillan & Weitzner, 1998; Gra lla & Thatcher, 2004). The concept of quality of life is further defined as being b oth subjective (what the patient is experiencing) and multidimensional (various aspec ts of personal well-being) (McMillan et al., 1998). Significance to Nursing Much research has been done in regard to pain, resulti ng in the creation of a large variety of pain assessment tools and the developmen t of evidence-based practice protocols, such as the World Health Organization (WHO) pai n ladder (WHO, 2007). Results of this study may shed light on the importance of a thorough nursing evaluation of end stage lung cancer patients upon admission to hospic e, which includes not only a complete physical examination, but an assessment of pain including location, descriptors or quality, intensity, frequency, aggravating factors and a lleviating factors. An important part of the pain evaluation is the identification of as sociated symptoms which have been shown in the literature to be prevalent in this group, suc h as dyspnea, fatigue, nausea and constipation.

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5 Chapter II Review of the Literature It is well known that lung cancer is the leading cau se of cancer-related death (ACS, 2007). This chapter presents the review of literatur e. First, the Theory of Unpleasant Symptoms is described. Following the introducti on of the conceptual framework, qualitative and quantitative research is presen ted as reviews of pain, related symptoms, and quality of life in end stage lung cancer patie nts. Conceptual Framework The Theory of Unpleasant Symptoms (TOUS) (Lenz, Pugh Milligan, Gift, & Suppe, 1997) was used as the conceptual framework for this study. The Theory of Unpleasant Symptoms proposes that similar factors may influence how a number of different symptoms are experienced. Therefore, it ca n be said that similar interventions may be effective for more than one symptom. The The ory of Unpleasant Symptoms also proposes that when multiple symptoms are present, the pa tient is likely to experience a multiplicative rather than additive effect. The Theory of Unpleasant Symptoms is composed of th ree units: the symptoms that the patient is experiencing, the factors that influe nce the nature of the symptom experience (antecedents), and the consequences of the sy mptom experience. Antecedents can include physiological (unpleasant symptoms), psycholo gical (reaction to illness) and situational variables (social situations). It is note d that these units can be related and have

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6 a reciprocal effect. The strength of the relationships is dynamic (Lenz et al., 1997; Gift, Jablonski, Stommel & Given, 2004). According to the Theory of Unpleasant Symptoms, eac h symptom the patient reports is a multidimensional experience, and can be con ceptualized and measured individually or in combination with other symptoms. While t he Theory of Unpleasant Symptoms recognizes that symptoms are different from ea ch other, it establishes that there are common dimensions seen across symptoms, such a s intensity, timing, level of distress and quality (Lenz et al., 1997). This study focuses on symptom intensity and its psychological effect, distress. Literature Review Pain When assessing any type of pain, it is important to determi ne underlying etiologies and other symptoms that are likely to accompa ny the pain. Pain can increase the perception of severity of other symptoms (such as dys pnea, fatigue and constipation). It also communicates to the patient that there is som e degree of disease progression (Griffin, Nelson, Koch, Niell, Ackerman & Thompson et al., 2006). A 2001 study by Wilkie, Huang, Reilly and Cain evaluated whet her descriptors from the McGill Pain Questionnaire (MPQ) were congruent with lung cancer patients’ descriptions of neuropathic and nociceptive pain. The final sample group consisted of one hundred twenty-three patients from three Western s tates who were English speaking, diagnosed with lung cancer, had at least one episode of pa in within one week prior to data collection and were physically able to ambulate on their own for two minutes. Instruments used in this study included the following: the Demographic Data Form

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7 (DDF), used to document oncologic variables and demographics; the McGill Pain Questionnaire was used to gather information from the pati ent regarding pain location, intensity, depth, quality and pattern; and the Lung Cancer E tiology Tool (LCET), which was developed for this study to tabulate data regarding elev en criteria defining nociceptive pain sites, and fourteen criteria defining ne uropathic pain sites. To further elaborate on this tool, pain sites were considered nocice ptive unless at least one neuropathic element was documented. If nociceptive and ne uropathic symptoms were reported, then the site was categorized as mixed. Partic ipants were asked to complete the Demographic Data Form and McGill Pain Questionnaire form s. The McGill Pain Questionnaire pain location and pattern was then reviewed in combination with the Demographic Data Form, tumor location and cancer treatme nt data. The documented pain sites (n = 457) were numbered in order of patient report a nd were considered in relation to other pain sites when determining the etiology category a s either nociceptive (n = 343) or neuropathic (n = 114). Results of the study showed that out of the twenty-two descriptors, four words were significant for describing noci ceptive pain (heavy, stinging, lacerating and suffocating), while eleven words were sig nificant for describing neuropathic pain (aching, tender, throbbing, pricking, pulling, tuggin g, punishing, miserable, nagging, numb and penetrating). An interesting c aveat to this population was that they did not select terms frequently associated wi th neuropathic pain such as burning, shooting, lancinating, tingling, itching, cold, flashing, blinding, torturing. Another significant finding of this study was that the lung cancer participants reported neuropathic pain fifty percent of the time, which is higher than ne uropathic pain reported in other groups (Wilkie et al., 2001).

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8 A 2004 phenomenological qualitative study by Coyle proposed t o address perceived barriers to pain management, misconceptions re garding opioid pain medications, and fear generated by uncontrolled pain in adv anced cancer patients. Seven participants consented to a series of two or more in-depth interviews lasting from thirty to sixty minutes, in the patients’ own setting, scheduled any where from one to sixty days apart, depending on the patient’s needs. Results of the i nterviews revealed that participants quickly learned that admitting to uncontrolled pain meant withholding of treatments (which was perceived as ultimately losing tim e), changes in pain medication regimen (which again lead to losing time due to side effec ts) and the realization that the disease was progressing. Participants also revealed t hat when pain was uncontrolled their level of hope and will to live was greatly diminished. Some even wished for a hastened death. The fear generated by the pain was enough to invoke anxi ety attacks in one of the participants. Two of the interviewees recalled caring f or family members who died in pain, and could only imagine that they would suffer the sa me fate. Results of the study showed that pain management was nonlinear throughout disease progression. While pain relief was essential to the participants, the side eff ects were considered a heavy trade-off. “What the disease was not able to destroy in their human spirit, the pain or uncontrolled side effects of the opioids were able to accomplish” (Coyle, 2004, p. 308). Other Symptoms Many cancer patients report multiple symptoms that occur simultaneously secondary to their disease or the treatment they are receiving (Cleeland, Mendoza, Wang, Chou, Harle, & Morrissey, et al., 2000). Determining the predominant symptoms related to pain in end stage lung cancer can establish a baseline standard of care, allowing

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9 patients to receive adequate assessment and management of their pain, and thus maintain an acceptable level of quality of life. Chen and Tseng (2005) proposed to examine which cancer-relate d symptoms cluster together, and to test the conceptual meanings of the revealed clusters. This was a cross-sectional study involving one hundred fifty-one parti cipants with various forms of cancer in both inpatient (n = 128) and outpatient (n = 23) s ettings in northern Taiwan. Study results were broken down into symptom occurrence, sy mptom severity, and interference of symptoms with activities of living. Th e average number of symptoms which occurred was 8.32 (SD = 3.72), with dry mouth being the most prevalent, fatigue was next and anorexia was third. Analysis of symptom seve rity showed that the most severe symptom was fatigue, followed by xerostomia and distr ess. Symptoms interfered with work most, followed by enjoyment of life and genera l activity. Symptoms with the highest correlation were grouped together into three main clusters: sickness cluster, which encompassed pain, fatigue, sleep disturbance, anorexi a and drowsiness; the gastrointestinal cluster, which included nausea and vomiting; and the emotional cluster, which involved distress and sadness. Validation of the sym ptom clusters revealed that participants with stage III and IV cancer had significant ly higher sickness cluster scores than those with stage 0-II (p<0.001). Participants receiving chemotherapy at the time of data collection had significantly higher scores on the gas trointestinal cluster than those not receiving chemotherapy (p<0.001). Depressed participants ( defined as a Hospital Anxiety Depression Scale subscale score of > 8) had significantly higher scores on the emotional cluster than those who were not depressed (p<0. 001) (Chen et al., 2005). Many of the symptoms in end of life care are thought to follow a trajectory,

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10 implying that the symptoms become more severe as death a pproaches. There is value in understanding the trajectory as medications providing relie f of symptoms may require adjustment as the disease progresses. Gift, Stommel, Jablonski and Given (2003) studied whether a symptom cluster present in lung cancer patients at diagnosis remained present three and six months later. This study was performed fr om a secondary analysis of one hundred twelve patients with newly diagnosed lung cancer wh o were assessed at baseline, three months and six months post diagnosis. The Theory of Unpleasant Symptoms served as the conceptual framework for this study. The symptom c luster was pre-established and consisted of fatigue, weakness, weight loss, appetite loss, nausea, vomiting and altered taste. Results of this study were reported using Cronbach scores of .66 at three months, and .75 at six months, which met reliability and s howed that the symptom clusters remained relatively the same over time. The answer to the second question of changes over time in the mean number of symptoms and lev el of severity was shown as a decline in number of symptoms reported (p<0.001) and a decrease in severity (p<0.002). The third question, related to the relationship between the severity ratings for individual symptoms at each time point, was found to have only modera te correlation along each time point. The fourth question evaluated the ability to predict the number of symptom clusters reported based on factors such as age, gender, the stage of lung cancer at diagnosis, therapy received and number of co-morbid condi tions. It was found that none of the between-subjects factors (surgery or not, radiat ion or not, gender, age, etc.) except staging of lung cancer at diagnosis showed significant cor relation (p<0.001). Question five evaluated whether symptom cluster severity was pred ictive of death. It was found

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11 that symptom severity reported six months after diagnosi s, age and stage of cancer at diagnosis were predictors of death six to nineteen mont hs after diagnosis (Gift, et al., 2003). Subgroups of lung cancer patients have been studied, as c ertain groups will present with unique needs, and will tolerate treatment dif ferently. Knowledge of specific population needs can help health care professionals develop a plan of care that is realistic and easy to follow. Gift et al. (2004) researched symptom c lusters in elderly patients with lung cancer. The purpose of their research was to ident ify the number, type, and cluster of symptoms this group experienced. The sample was describe d as two hundred twenty patients age sixty-five to eighty-nine years (mean = 72 yea rs, SD = 5.02), newly diagnosed with both early and late stage lung cancer. T his study was a secondary analysis of data collected as part of a larger study. Th e authors used the middle-range Theory of Unpleasant Symptoms (TOUS) as the framewor k to guide their research. Results of symptom occurrence showed that participants re ported a mean of eleven symptoms (SD = 4.95) with fatigue, nocturia, cough, pain, and difficulty breathing as the top five. Mean symptom severity ranged from 1.31-2.33 on a 13 scale. Symptoms reported to be most severe were lack of sexual interest, vomiting, trouble sleeping, fatigue, pain and difficulty breathing. Symptoms perceived to cause the most limitation in daily activities were fatigue, difficulty breathing, weakness, loss of coordination, vomiting and pain. The relationship of these symptoms corr elated with the ability to perform daily activities (p<0.01). The seven symptoms found to form a cluster were fatigue, nausea, weakness, appetite loss, weight loss, al tered taste, and vomiting (Gift et al., 2004).

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12 Among the many distressing symptoms that end-stage lung can cer patients may experience, constipation is one of the least often eva luated (McMillan, 2002). Hospice patients are at risk of developing constipation due to the us e of opioids and other medications used for symptom management, decreased food/flu id intake, decreased activity levels and comorbidities such as stroke, diabetes electrolyte imbalances and renal failure (McMillan, 2004). Evaluation, prevention and treat ment of constipation should be part of the hospice patients’ daily care. McMillan (2002) reported through secondary analysis of da ta collected from seventy hospice patients, that sixty-three percent re ported some degree of constipation, with nineteen percent of these patients reporting severe constipation upon hospice admission. Constipation was assessed using the Constipat ion Assessment Scale (CAS), which is an eight-item three-point Likert-type scale t hat measures the presence and intensity of constipation. Each item is rated by the patient as no problem, some problem, or severe problem. Scores may range from 0 (no constipa tion) to 16 (worst possible constipation). Constipation was evaluated two weeks aft er admission, and was found to have increased to include sixty-eight percent of the patie nts enrolled in the study. This increase is thought to be due to the fact that it takes ab out two weeks to completely correct a constipation problem, and that opioids are ad justed frequently after hospice admission, usually with an increase in dosage and/or freque ncy. When constipation was evaluated four weeks after admission to hospice, it was f ound to have decreased to fifty percent (McMillan). Symptom Distress Symptom intensity (the extent to which the pain is b ad) differs from symptom

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13 distress (the extent to which the pain is considered me ntally anguishing) and each can be approached in different fashions. Tishelman et al. (2005) discussed symptoms in patients with lung cancer and sought to specifically distinguish d istress from intensity of symptoms by addressing four objectives. The first objective examined patterns of current symptom intensity in relation to patterns of distress i n a population of patients newly diagnosed with inoperable lung cancer. The second object ive evaluated the consistency of symptom intensity and distress patterns across vario us time points in the study. The third objective examined differences in patterns of inten sity and distress in subgroups based on certain demographic and disease-related variables. The last objective examined the possible correlation of high symptom intensity to sym ptom distress. This was a longitudinal quantitative study that took place in two diff erent university hospitals that specialize in the non-surgical treatment of lung cancer in Stockholm. Four hundred adults were recruited with the only criteria being newly diagno sed inoperable lung cancer. Self reported data was collected using an adapted version of the M cCorkle and Young Symptom Distress Scale (SDS) and the Thurstone Scale o f Symptom Distress – Lung Cancer (TSSD-LC) at baseline (T1), then two weeks later (T2), then one month after T1 (T3), then three months after T1 (T4), then six month s after T1 (T5), then one year after T1 (T6). Nine symptoms were assessed: fatigue, breathing, o utlook, cough, appetite, insomnia, pain, appearance and bowels. At T1, pain was ran ked seventh in intensity, and by T6, pain was ranked third. Interestingly, there was no t a significant increase in symptom distress. Fatigue and breathlessness actually ca used more distress than pain. Comments made in the discussion section of this report suggest that perhaps pain is accepted as a part of cancer and to a degree may be expected, especially closer to death.

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14 Breathlessness and fatigue were considered more distressing due to the association with progression of disease (Tishelman et al., 2005). Broberger, Tishelman and von Essen (2005) continued the rese arch on the original Tishelman et al. (2005) group of participants, to de termine if there are discrepancies or similarities in assessment of sympt om occurrence and distress among nurses and family caregivers. This portion of the study w as broken up into two sections: the Patient-Nurse Study (PN Study) and the Patient-Family Caregiver Study (PFC Study). Inclusion criteria for the Patient-Nurse Study was as f ollows: participants should be able to communicate in Swedish, have received radiation ther apy for at least five consecutive days, and data collection should coincide with one of th e time points in the main project (T2-T6). Thirty-three patient-nurse dyads met eligibili ty. Inclusion criteria for the Patient-Family Caregiver Study was as follows: patient s and family caregivers should be able to communicate in Swedish, family caregivers shoul d be over eighteen years of age and have a close and stable relationship with the patient and data collection should coincide with one of the time points in the main proje ct (T2-T6). A total of fifty-four patient-family dyads were created. Data for this study was already collected from the Symptom Distress Scale and Thurstone Scale of Symptom Di stress – Lung Cancer Scale from the main project. Results of the Patient-Nurse S tudy dyads revealed that the nurse tended to assess the patients’ symptoms occurrence as grea ter than the patients did (P<0.05). The nurses consistently rated symptom distress lower than what the patient reported (P<0.05). Like the nurses, the family caregivers also rated the occurrence of symptoms greater than the patients did, although there was closer agreement than the nurses (P<0.01). Family caregivers did a better job than nurses when evaluating symptom

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15 distress (P<0.01). This is thought to be due to the close n ature of the relationship between the patient and the caregiver versus the relationship betw een the patient and the nurse (Broberger et al., 2005). Cooley, Short and Moriarty (2003) examined symptom prevalence distress and changes over time in adults receiving treatment for lun g cancer. The purpose of this study was to describe which symptoms were most distressing, the prevalence of these symptoms, how these symptoms change over time. This st udy was conducted from secondary analysis of one hundred seventeen participants’ responses to the Symptom Distress Scale, medical record review and interviews. Inclusion criteria involved a histologic confirmation of lung cancer, participants had received treatment for cancer (either surgery, chemotherapy, radiation, or combinatio n of any these treatments), had no other malignancy, were diagnosed within one hundred days of entering study and completed all interviews at baseline, three months and six months. When symptom distress was evaluated, all four treatment groups reported fatigue as being the most prevalent distressing symptom at a ll three time points, with frequency of pain second, insomnia third, appetite fourth an d severity of pain fifth. The second aim of this study, which focused on prevalence of d istressing symptoms, broke results down into the four treatment groups: surgery group (n = 45), radiation group (n = 13), chemotherapy group (n = 8) and combined therapy (n = 51). In the surgery group, pain, fatigue and insomnia were the three most distre ssing symptoms at baseline and again three months later. Frequency of pain, fatigue and pain severity were the most distressing symptoms six months. In the radiation group, fatigue, appetite and severity of nausea were the top three distressing symptoms at basel ine, fatigue, appetite and nausea

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16 characterized the three month mark, and by six months thi s group listed fatigue, frequency of pain and insomnia as the most distressing sympt oms. In the chemotherapy group, fatigue, appetite and frequency of pain were most distre ssing at the baseline assessment and remained prevalent throughout the six mont hs. In the combination group, fatigue, frequency of pain, and insomnia were distressing at all three time points. The third aim of this study was to evaluate how symptoms change over time. In general it was noted that the treatment groups showed a decrease in symptom severity from baseline to three months, with an increase at six months. The only consistent pattern of predictors was symptom distress reported at baseline. Symptom dist ress at entry was able to predict for nine of thirteen symptoms at three months, and seven of thirteen symptoms at six months (Cooley et al., 2003). A study by Degner and Sloan (1995) study looking at symptom di stress in newly diagnosed ambulatory cancer patients, and as a predicto r of survival in lung cancer, examined four hundred thirty-four cancer patients, eighty-t wo of whom had lung cancer, in two different oncology clinics in Canada. The purpos e of the study was to report levels of symptom distress and to describe factors associated w ith this distress over a six month period of time. Data collecting tools included participant c ompletion of the Symptom Distress Scale, direct interview, and medical chart r eview. Patients eighteen years of age or older with a diagnosis of cancer within six months were approached. Results showed that the level of symptom distress in t his group was very low, with most participants rating their symptom distress as one or two on a five point scale. Fatigue, insomnia and pain were the most problematic sympto ms reported. Women reported more distress than men (p = 0.041) and patients with advanced disease at time of

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17 diagnosis had more distress than those with early dise ase (p = 0.0001). Level of distress was noted to depend on disease site, with lung cancer patien ts reporting the most distress. Survival analysis of the lung cancer patients demonstrate d that symptom distress scores had a direct relation to survival. Stage of disease was seen as a covariate (Degner et al., 1995). Oi-Ling, Man-Wah and Kam-Hung (2005) published a study evaluating symptom distress as rated by advanced cancer patients compa red to the ratings of caregivers and physicians in the last week of life. Thi s was a prospective study, which included all inpatient hospice patients admitted to a hospi ce ward in a Hong Kong hospital with a life expectancy of two weeks or less to live. The Symptom Distress Scale was administered to the participant upon admission to th e ward, then every seven days until the patient died. The distress from each symptom w as rated on a 0-5 scale, with grade 0 = not at all distressed, grade 1 = a little bit dist ressed, grade 2 = somewhat distressed, grade 3 = quite a bit distressed, and grade 4 = very much distressed. Only thirty patients were able to complete the two questionnai res needed to be included in the study, with nineteen of these thirty completing more than two questionnaires as they lived longer than the predicted two weeks. Only the questionnaire set completed within the last week of life was included for analysis. Caregivers and physicians also completed the same questionnaires based on their observation of the pat ients’ symptom distress. Results of this study reveal that the median age of th e participants was sixtynine years of age, gender ratio was equal men to women, en tire sample was ethnic Chinese, and lung cancer was the most common primary tumo r, with gastrointestinal cancers listed second. Of the thirteen symptoms listed on the Symptom Distress Scale,

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18 nine symptoms (of any distress grade) were most commonly re ported to cause patient distress: fatigue (100%) with a distress median score of 3, cachexia (93%) with a distress median score of 3, anorexia (93%) with a distress media n score of 3, dyspnea (70%) with a distress median score of 1, dry mouth (60%) with a dis tress median score of 3, cough (60%) with a distress median score of 1, pain (57%) with a distress median score of 1, insomnia (47%) with a distress median score of 1, and con stipation (47%) with a distress median score of 1. The four most distressing symptoms rat ed by participants were fatigue, cachexia, anorexia, and dry mouth, all with a dist ress median score of 3. Fatigue, cachexia and anorexia were shown to cause the most freque nt distress and were rated the most distressing of all symptoms. Caregivers rated fati gue, cachexia and anorexia as most distressing, but didn’t rate the severity of the di stress as high as the patients. Statistically significant agreement between raters wa s only evident for the symptoms of dyspnea, cough, dry mouth, constipation and insomnia (all w ith P value <0.005). Physicians also rated fatigue, cachexia and anorexia as th e most distressing symptoms, but again didn’t rate the severity of distress as high a s the patients. Symptoms that evoked statistically significant agreement between patie nts and physicians were dyspnea, pain, and cough (all with P value <0.005) (Oi-Ling et al., 2005) Quality of Life Sarna, Brown, Cooley, Williams, Chernecky, Padilla, et al. (2005) studied the quality of life (QOL) of two hundred seventeen women wit h non-small cell lung cancer and relationships with demographics, health status and meaning of illness (MOI). This was a descriptive, cross-sectional study. Assessment tools included the Quality of Life Scale-Patient Version (QOL-Patient) (Cronbach of 0.71-0.91 for this study), the Short

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19 Form-36 (Cronbach of 0.95 for this study), and the Center for Epidemiologic StudiesDepression Scale (CES-D) (Cronbach of 0.87 for this study). Meaning of illness was assessed using a set of eight cards, each with a stateme nt describing illness as positive, negative or other meaning. Participants were asked to sel ect a card with a statement most relevant to how they feel. The mean age of the parti cipants was sixty-five years (SD = 12.00), and Caucasians had the largest representation at eigh ty-five percent. The majority of the participants had at least one comorbid condition (sixty-seven percent), with the most common being chronic obstructive pulmonary disease (COPD). Eighty-seven percent of the women had a history of smoking, and while nine ty-nine percent attempted to quit smoking upon diagnosis, only fifty-seven percent wer e able to do so. Thirty-five percent indicated that they were depressed according to t he results of the Center for Epidemiologic Studies-Depression Scale. Quality of life assessment found that depressed mood, meaning of illness, and a younger age were consistentl y related to a lower global, physical, psychological, social and spiritual quality of l ife (all p<0.0001) (Sarna et al., 2005). Symptom frequency and severity in patients with metast atic or locally recurrent lung cancer (LRLC) was evaluated by Lutz, Norrell, Bert ucio, Kachnic, Johnson and Arthur, et al. (2001). This study was a cross-sectional an alysis of sixty-nine community lung cancer patients considering radiotherapy for pallia tion of their advanced lung cancer. The Lung Cancer Symptom Severity (LCSS) scale, which e valuates physical and functional symptoms’ impact on quality of life, was admi nistered upon initial radiation consultation. Symptoms were reported in order of frequen cy as follows: fatigue (eighty percent), cough (seventy-seven percent), dyspnea (sevent y-three percent), loss of appetite

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20 (sixty-five percent), pain (fifty-seven percent), and h emoptysis (seventeen percent). Evaluation of symptom severity revealed that fatigue, pain, dyspnea, and loss of appetite were the most frequently reported. Quality of life was r eported to have diminished prior to death, with an increase of symptom frequency reported in all six categories. The major limitation to this study is that the symptoms (appetite, f atigue, cough, dyspnea, hemoptysis and pain) were predetermined by the Lung Cancer Sym ptom Severity Scale. If other symptoms are present, such as constipation, th ey are not evaluated by this tool (Lutz et al., 2001). A 2000 quality of life descriptive study by McMillan and Weitz ner reviewed previously collected data from a 1998 study to identify most and least problematic aspects of end of life care in hospice patients and the relati on to quality of life. The sample consisted of two hundred thirty-one homecare hospice patie nts with cancer in southwest Florida. The sample mean age was seventy-one years, fifty-two percent of participants were Caucasian, and the most common cancers reported were lung (22%), colorectal (14%), breast (12%), and prostate (10%). The instrument us ed to collect data was the Hospice Quality of Life Index (HQLI) which is a twentyeight item self report questionnaire broken down into three sections: functiona l well-being, psychophysiologic well-being and social/spiritual well-being. Results of t his analysis showed that the functional well-being subscale mean score was 35.1 (SD = 14.8) (possible range of 0-70), which was the lowest of the three subscales. The sympto m that participants reported as problematic most frequently was fatigue. The psychophysiolo gic well-being subscale mean score was 93.2 (SD = 21.8) (possible range 0-130). More than half of the patients reported feeling sad on this subscale. Items rated as the l east problematic included hope,

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21 pain relief, feeling angry and nausea. The highest item mean scores were noted in the social/spiritual well-being subscale, with almost half of participants rating satisfaction with their relationship with God (McMillan et al., 2000). S ummary Pain in end stage lung cancer is multidimensional and sho uld be treated in a manner that targets as many symptoms as possible. Pain ca n be caused by tumor involvement, diagnostic and/or therapeutic interventions and toxicities of treatment, which can cause different types of pain to occur simulta neously, requiring different types of treatment or combined therapies (McGuire, 2004). The l iterature review demonstrates that pain is frequently accompanied by other symptoms such as dyspnea, fatigue, constipation and loss of appetite, which can increase sy mptom distress and decrease quality of life. Oncology nursing has much to gain by studying pain and accompanyi ng symptoms in the end stage lung cancer population. This ex tremely symptomatic group has demonstrated that they suffer higher degrees of frequen cy and severity of symptoms than patients with other types of cancers, and that the se symptoms increased in frequency and severity as the end of life approaches. Palliation of these symptoms will improve perceived quality of life, affording the patient more tim e to complete end of life tasks.

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22 Chapter III Methods The literature review on end stage lung cancer patients s upports the idea that there is a relationship between pain, associated symptoms and quality of life. This chapter discusses study design, sample, assessment tools used, procedures, and statistical analysis. Sample and Setting The sample for this present study was drawn from a previous ly completed study that included three hundred twenty-nine home care hospice pa tients from a large not-forprofit hospice agency, located in southwest Florida. Da ta was obtained from an original study evaluating the use of the COPE Intervention for fa mily caregivers. This intervention was shown to improve symptom management in hospice homecare patients (McMillan & Small, 2007). Inclusion criteria Identification of potentially eligible participants wa s identified by hospice staff. Inclusion criteria for the study was as follows: parti cipants had to be able to read, and understand English; minimum age of eighteen years or olde r; participants had to have a diagnosis of end stage lung cancer; participants must ra te pain at a level of three or more on a 0-10 pain scale; and achieve a minimum score of eig ht on the Short Portable Mental Status Questionnaire (SPMSQ). Exclusion criteria

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23 Participants with cognitive issues who scored below e ight on the Short Portable Mental Status Questionnaire were excluded. Patients who di splayed a performance status of less than 40 (as determined by the Karnofsky Performan ce Scale) suggesting that they would not live for more than a few days, were also excl uded from this study. Instruments Short Portable Mental Status Questionnaire The Short Portable Mental Status Questionnaire (SPMSQ) i s a simple ten item test of remote memory, knowledge of current events, and mathematical ability (Pfeiffer, 1975) (Appendix A). It is administered by the interviewer an d scored on the number of errors an individual makes and measures levels of mental impairment. The SPMSQ was used to screen patients for eligibility for the study. Subjects with SPMSQ scores below eight were excluded. Demographic Data Form Standard demographic data was collected on patients to allow description of the sample. Data included age, gender, education, marital stat us, occupation, cancer diagnosis, length of time since diagnosis. Karnofsky Performance Status Scale The KPS is a measure of functional status developed by Ka rnofsky et al. (1949) that is widely used in oncology settings to assess pati ent functioning. The KPS is scored on a scale from 0 (dead) to 100 (normal functioning) (Appendix B). KPS scores were used to determine patient eligibility for the study. Pati ents with scores lower than 40 were excluded. Pain Numeric Rating Scale

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24 Pain intensity was assessed using an eleven point numeric rating scale (NRS) with scores ranging from 0 to 10 (Appendix C). The patien t was asked to respond verbally with a number between 0 (no pain) and 10 (worst pain) to rate pain intensity at that moment (McGuire, 1984; Stewart, 1977). Dyspnea Intensity Scale Among patients with severe dyspnea and the resulting fatigue an 11-point Dyspnea Graphic Rating Intensity (DGRIS) can be used to as sess dyspnea intensity (Appendix D). This scale is preferred due to ease of admi nistration and accuracy (Moody, Lowry, Yarandi, & Voss, 1997; Silvestri & Mahler, 1993) Test-retest reliability has ranged from .89-.92 and concurrent validity with other measures is .88-.94 (Moody et al., 1997). The Constipation Assessment Scale The Constipation Assessment Scale (CAS) (McMillan & Williams, 1989) is an eight-item three-point Likert-type scale that measure s the presence and intensity of constipation. Each item is rated by the patient as no pr oblem, some problem, or severe problem. Scores may range from 0 (no constipation) to 16 (worst possible constipation). Test-retest with brief delay provided strong evidence of rel iability of this scale (r = .98). Memorial Symptom Assessment Scale The Memorial Symptom Assessment Scale (MSAS) (Porteno y et al., 1994) was used to measure distress caused by symptoms other than the t hree target symptoms. The Memorial Symptom Assessment Scale is a patient self-r eport scale that assesses a diverse group of symptoms common to persons with cancer. Subscale s provide data about frequency, severity, and distress associated with these symptoms. Distress is measured on

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25 a 5 point summated rating scale with total scale scores that may range from 0 (no distress) to 96 (very much distress). Validity was supported by high correlations with clinical status and quality of life. Alpha reliabilities were hig h (.83-.88). Hospice Quality of Life Index The Hospice Quality of Life Index (HQLI) (McMillan & Weitnzer, 1998) is a twenty-eight item tool that measures overall quality of life (Appendix E). This scale is divided into three sections which measure psychophysiologic al well-being (physical problems and psychological problems), functional well-bei ng (ability to complete normal activities of daily living, ability to concentrate and inde pendence), and social/spiritual well-being (spirituality, relationship with God, relations hips with family and friends). Items are reported on a zero to ten scale, with zero indicating the greatest impact on quality of life, and two hundred eighty indicating no impact o n quality of life (McMillan et al., 1998). Factor analysis confirmed these subscales and alpha coefficients ranged from 0.84-0.86. Procedures The original study was approved by the hospice ethics comm ittees, and the University’s Institutional Review Board. Following study a pproval, hospice staff members were hired and trained to perform data collection roles. Participants were identified by hospice staff, as well as medical record review, as having a diagnosis of lung cancer, and were reporting pain. Once approached, participan ts were educated regarding the purpose of the study, commitment required, and inclusion criteria. Upon agreement to participate, the patients were screened with the Shor t Portable Mental Status

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26 Questionnaire (SPMSQ). If patients passed the SPMSQ, th e symptom and quality of life scales were administered. Data Analysis For this current study, the existing data set from the origi nal Caregiver Study was accessed via the Statistical Package for the Social Sciences (SPSS). Descriptive statistics were used to analyze the demographic variables, including means, standard deviations, percentages and frequencies. A series of Pear son correlations were used to analyze the relationships between pain and other identif ied commonly occurring symptoms, and whether these symptoms have a relationship with quality of life.

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27 Chapter IV Results, Discussion and Conclusions This chapter presents the findings of the study. Included in this chapter are the study results, discussion of results, and conclusions. Results Demographic Data The original study by McMillan and Small (2007) included hosp ice patients with thirty-nine different cancer diagnoses. Lung cancer patients made up the largest portion of this group (35%). The next largest group was col on cancer at 14%. The sample for this secondary analysis consisted of fifty end-stage lung cancer patients rating pain at a level of 3 or greater. Thirty-six were males (72%) and fourteen were females (28%). This sample was composed primarily of Caucasians (90% ), African Americans (6%), and Hispanics (2%). The mean number of months since diagnosis was thirteen. The mean educational level of the sample was approximat ely twelve years. Thirty-four (68%) of the patients in the sample were married, ten ( 20%) were divorced, and five (10%) were widowed. One person was never married (Table 1) Incidence and Intensity of Pain, Constipation and Dyspnea The first research objective evaluated the incidence and intensity of pain, constipation and dyspnea. Data was derived from three measures, the CAS, NRS and the DGRIS. The NRS, a self-report 0-10 pain scale, was used to evaluate pain intensity. The

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28 Table 1. Frequency and Percentage of Patients by Sex, Race Marital Status and Education (n = 50) Demographic frequency percent ________________________________________________________________________ Sex Male 36 72 Female 14 28 Race Caucasian 45 90 African American 3 6 Hispanic 2 4 Marital status Married 34 68 Divorced 10 20 Widowed 5 10 Never married 1 2 Education 8 years or less 5 10 9 years 1 2 10 years 1 1 11 years 7 14 12 years or greater 36 72 ________________________________________________________________________

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29 mean pain intensity level reported was 4.7 (standard deviati on = 1.5, n = 50). The CAS is a 0-16 scale which measures the presence and severity of co nstipation. The mean for constipation severity was 3.4 (standard deviation = 2.7, n = 50). The DGRIS is a 0-10 scale which measures dyspnea intensity. The dyspnea intensity mean for this group was 4.3 (standard deviation = 2.8, n = 50) (Table 2). Relationships Among Variables Each of the remaining three research objectives examined relationships among the variables, pain intensity, pain distress, dyspnea intensity, dyspnea distress, constipation intensity and quality of life. Because of missing data, some correlations were calculated with less than fifty patients. Pain intensity and pain distress Part one of the second research objective examined a relationship between pain intensity and pain dist ress. The study showed that there was a significant positive correlation (p = .002) between pain intensity and pain distress (Table 3). Pain intensity and dyspnea distress. Part two of the second research objective evaluated a possible relationship between pain intensity a nd dyspnea distress. No significant correlation between pain intensity and dyspne a distress was found (Table 3). Pain distress and dyspnea intensity. Part one of the third research objective evaluated a possible relationship between pain distress an d dyspnea intensity. No significant correlation between pain distress and dyspnea intensity was found (Table 3). Pain distress and constipation intensity. Part two of the third research objective examined possible correlation between pain distress and constipation intensity. No significant correlation between these two symptoms were identified (Table 3).

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30 Table 2. Ranges, Means and Standard Deviations (SD) for t he NRS, CAS, DGRIS and MSAS. Possible Actual Variables N range range Mean SD ________________________________________________________________________ Pain intensity 50 0-10 3-8 4 .7 1.5 Constipation presence/ 50 0-16 0-12 3.4 2.7 intensity Dyspnea intensity 50 0-10 0-9 4 .3 2.8 Pain distress 48 0-4 1-4 2.5 1.0 Dyspnea distress 44 0-4 0-4 2.3 1.3 ________________________________________________________________________ Relationships with Quality of Life Research objective four examined the variables pain intens ity, pain distress, dyspnea intensity, dyspnea distress, constipation inte nsity and their relationship with quality of life. Pain intensity and quality of life. The first part of this objective was to research a possible relationship between pain intensity and quality o f life. No significant correlation was found between these two variables (Table 3). Pain distress and quality of life. The second part of this research objective was to examine the variables pain distress and quality of life No significant correlation was found (Table 3). Dyspnea intensity and quality of life. The third part of the objective evaluated

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31 Table 3. Pearson Correlations Among Pain Intensity and P ain Distress Variables from NRS, CAS, MSAS, and HQLI tools. Dyspnea Dyspnea Constipation Pain Pain Quality Variables distress intensity intensity distr ess intensity of life ________________________________________________________________________ Dyspnea n = 44 16 distress r = .21 -.26 p = .175 .332 Dyspnea n = 44 48 50 18 intensity r = .47 .11 .23 -.09 p = .001 .468 .112 .709 Constipation n = 44 50 50 18 intensity r = .18 .10 17 -.57 p = .208 .507 .241 .013 Pain n = 43 48 18 distress r = -.015 .21 -.24 p = .925 .152 .346 Pain n = 44 48 18 intensity r = .13 .44 .14 p= .399 .002 .578 ________________________________________________________________________ pain intensity in relation to quality of life. The find ings show that there is no significant correlation between these two variables (Table 3). Dyspnea distress and quality of life. The fourth part of the objective addressed the two variables pain distress and quality of life. The findings show that there is not a significant correlation between pain distress and quality of life. Constipation intensity and quality of life. The last part of this research objective evaluated the relationship between constipation intensity and quality of life, which were found to be significantly correlated (p = .013) (Table 3).

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32 Discussion This secondary analysis of previously collected data exa mined relationships between pain, dyspnea and constipation, and the relatio nships of each of these symptoms with total quality of life. Limitations of this study inc lude the fact that it is not generalizable to the non-hospice population, the sample was primarily Caucasian, and the sample size was relatively small. Patients with lu ng cancer tend to present with symptoms, and because of this, palliation is started alm ost immediately after diagnosis. Palliation usually includes the use of opioid analgesics tha t are known to be constipating. Patients receiving treatment for their cancer are also at risk for constipation as they may have a decreased ability to ambulate secondary to dyspne a, and have decreased food and fluid intake due to nausea from treatment. Thorough asses sment of all hospice patients upon admission and at every subsequent visit should include an evaluation of constipation, initiation of preventative measures, and fo llow up of intervention. Demographic Data The sample consisted of fifty end-stage lung cancer patie nts admitted to a hospice program who were reporting pain at a level of at least 3 on a 0-10 pain scale. The majority of the sample was male (72%), which is consis tent with ACS statistics, that report that over half of all people diagnosed with lung cancer are male. The overwhelming majority of study participants in this group were Caucausian. While it is not uncommon to see this type of disparity i n hospice care (Greiner, Perera & Ahluwalia, 2003), it is one of the limitations of this st udy. Incidence and Intensity of Pain, Constipation and Dyspnea Pain incidence and intensity was derived from the Pa in Numeric Rating Scale,

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33 which is a self-report 0-10 pain scale used to evaluate pai n intensity. A requirement of study participation was that the patient reported a pain lev el of at least 3. The mean pain level reported was 4.7 (SD = 1.5, n = 50). This moderate pa in rating suggests that newly admitted hospice patients were experiencing some pain con trol, but pain was still a problem. While the mean pain level is in the moderate ra nge, some patients reported pain intensity as great as 8. A review of research by Potter et al. (2004) reported that seventysix percent of patients recruited from palliative care s ettings for a pain study reported pain. This might be a result of advanced disease including metastasis, which is usually present in end stage disease. Constipation presence and severity was measured using the CAS, which is a 016 rating scale. The mean constipation severity reported for this group of newly admitted hospice patients was 3.4 (SD = 2.7, n = 50). This is a moderate rating on the CAS scale, and determines presence of a problem. Some participants re ported constipation intensity as high as 12 on the scale. This finding is supported in the literature by McMillan (2002), who found that the mean score for constipation in newl y admitted hospice patients was 3.3 (SD = 3.4). Dyspnea intensity was measured using the DGRIS, which is a 0-10 rating scale. The dyspnea intensity mean for this group was 4.3 (SD = 2 .8, n = 50). The highest dyspnea intensity rating reported in this group was 9. Thi s finding is also supported in the literature by Moody and McMillan (2003) who reported that th e mean dyspnea ratings reported by a group of hospice patients was 4.5 (SD = 2.2). Relationships Among Variables Pain intensity and pain distress. The positive significant correlation between

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34 pain intensity and pain distress (r = .44, p = .002) might be expected. It has previously been reported that eighty-five percent of patients experi ence pain in the end of life, with fifty-six percent of these patients reporting that the pain is distressing (Edmonds, Karlsen, Kahn & Addington-Hall, 2001). A later study by Broberger et al (2005) did not support a direct correlation between these two variables. O ther symptoms were reported to be more distressing than pain, specifically fatigue and bre athlessness. Broberger and colleagues (2005) concluded that lung cancer patients expect to have a certain degree of pain, especially towards death. Pain intensity and dyspnea distress. The finding of no significant correlation between pain intensity and dyspnea distress (r = .13, p = .399) was unexpected. There is much literature supporting the idea that these two variables co-exist, but no literature supporting a significant relationship (Tischelman, Degner & Mueller, 2000; Higginson & McCarthy, 1989). Pain distress and dyspnea intensity. No significant correlation was found between the two variables pain distress and dyspnea int ensity (r = .11, p = .468). Literature supports that these two variables frequently e xist together in patients with lung cancer (Higginson et al., 1989; Lutz et al., 2001), but there ha s been no evidence to support a direct relationship. Pain distress and constipation intensity. There was not a significant relationship between pain distress and constipation intensity (r = .21, p = .152). This reasonable finding may reflect constipation as a side effect of pai n management. A patient reporting a high level of distress caused by pain is probably not ge tting adequate treatment with pain medications, and therefore would not be as likely to be constipated. In a study by

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35 McMillan (2002), constipation was a symptom reported most f requently by lung cancer patients. Relationships with Quality of Life Pain intensity and quality of life. It was unexpected that pain intensity did not have a relationship with quality of life (r = -.14, p= .578), which differs from the literature that found a direct correlation (Wang, Cleeland, Mendoza, Engstrom, Liu & Xu, et al., 1999). It is possible that the moderate mean pain level re ported (4.7) was found to be less of a problem as compared to constipation. If reported pain levels were higher, a stronger correlation between pain and quality of life may have be en observed. A lack of correlation between these two variables may also be s econdary to a restricted range problem, as patients were excluded from this study if pain w as rated less than 3 on the 0-10 pain numeric rating scale. Despite the fact that t here was no correlation, it is an important finding as it demonstrates the importance of a thorough pain assessment upon admission to hospice. Pain distress and quality of life. The finding of no significant correlation between pain distress and quality of life (r = -.23, p = .346) is understandable for the same reasons that pain intensity did not impact quality of life Pain distress and pain intensity were significantly correlated in this study group (r = .44 p = .002). Dyspnea intensity and quality of life. The finding of no significant correlation between dyspnea intensity and quality of life (r = -.09, p = .227) was unexpected. In this study, this finding might be explained by the moderate mean dyspnea intensity level (mean = 4.3, SD = 2.8) reported by this group. This may al so be explained by early referral to hospice, before symptoms are severe. The re is literature which reports a

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36 significant increase in dyspnea at the end of life (Hi gginson et al., 1989), as well as an impact on the quality of life (McMillan & Weitzn er, 2000). Dyspnea distress and quality of life. It is an unexpected finding that there was no significant correlation between dyspnea distress and quality of life (r = -.25, p = .332) for the same reasons discussed in the previous section. Dyspnea distress and dyspnea intensity were significantly correlated in this study gro up (r = .46, p = .001). Constipation intensity and quality of life. The two variables, constipation intensity and quality of life, were found to have a posit ive significant correlation (r = -.57, p = .013), and confirms results of previous studies (McMillan et al., 2000). The prevalence of constipation in the hospice population ind icates the need for improved symptom assessment upon admission to hospice, teaching pr eventative measures, and follow up of interventions during routine nursing visits to pre vent or treat the problem on a continuous basis. Implications for Nursing This study demonstrates the importance of addressing pain, dy spnea and constipation in the lung cancer patient receiving end of l ife care. The significant correlation found between constipation and quality of life warrants further investigation of the effects of pain management on constipation. E ducation of hospice staff on the assessment, prevention and management of constipation would greatly benefit this subpopulation of hospice patients. Implementation of a constipation assessment protocol, administered upon admission, and reevaluated upon each subse quent routine nursing visit, would be beneficial for the patient, family and hospice n ursing practice.

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37 Recommendations for Further Research In order to improve generalizability of this research, a larger study sample could be accessed which includes a more heterogeneous mix of eth nicities representative of lung cancer statistics. The study could be replicated i n other geographic regions. Distress from constipation was not assessed in this study, and futur e studies might include that important variable. Development of a constipation prev ention protocol, which could be implemented upon admission to a hospice program, is wor thy of exploring. Conclusions The purpose of this secondary analysis of data was to e valuate pain intensity and distress, dyspnea intensity and distress, and constipati on intensity and the relationship of these variables to quality of life. The study found signi ficant relationships between pain intensity and pain distress, and dyspnea intensity and dyspnea distress. Constipation was the only variable found to be significantly correlated w ith quality of life in this subpopulation. This is an important finding, as participant s in this study rated pain and dyspnea at moderate levels, but constipation was the only variable shown to have a relationship with quality of life. Education of staff me mbers regarding this important aspect of assessment will ultimately benefit the pati ent, and perhaps improve their overall quality of life.

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38 References American Cancer Society. (2007). Retrieved February 17, 2007, from http://www.cancer.org/docroot/CRI/content/CRI_2_2_1X_How_many_pe ople_get_lung_ cancer_26.asp?sitearea = Broberger, E., Tishelman, C. & von Essen, L. (2005). Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress. Journal of Pain and Symptom Management, 29, 572-583. Chen, M. & Tseng, H. (2006). Symptom clusters in cancer patients. Support Care Cancer [Epub ahead of print]. Retrieved from http://www.springerlink.com.proxy.usf.edu/media/99eqac4jqh3rrvdehm2u/ contributions/ g/1/1/u/g11u2403306876l7.pdf Cleeland, C., Mendoza, T., Wang, X., Chou, C., Harle M., Morrissey, M., & Engstrom, M. (2000). Assessing symptom distress in cancer patients: The M.D. Anderson symptom inventory. Cancer 89 1634-1646. Cooley, M. (2000). Symptoms in adults with lung cancer: A systematic research review. Journal of Pain and Symptom Management 19, 137-153. Cooley, M., Short, T., & Moriarty, H. (2003). Symptom prevalence, distress, and change over time in adults receiving treatment for l ung cancer. Psycho-Oncology 12 694-708.

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39 Coyle, N. (2004). In their own words: Seven advanced cancer patients describe their experience with pain and the use of opioid drugs. Journal of Pain and Symptom Management 27 300-309. Degner, L. & Sloan, J. (1995). Symptom distress in newl y diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer. Journal of Pain and Symptom Management 6 423-431. Dodd, M., Miaskowski, C., & Paul, S. (2001). Symptom clu sters and their effect on the functional status of patients with canc er. Oncology Nursing Forum 28 465470. Edmonds, P., Karlsen, S., Kahn, S., & Addington-Hall, J. (2001). A comparison of the palliative care needs of patients dying from chro nic respiratory diseases and lung cancer. Palliative Medicine 15 287-295. Gift, A., Jablonski, A., Stommel, M., & Given, C. ( 2004). Symptom clusters in elderly patients with lung cancer. Oncology Nursing Forum 31 203-210. Gift, A., Stommel, M., Jablonski, A., & Given, W. (2003) A cluster of symptoms over time in patients with lung cancer. Nursing Research 52 393-400. Gralla, R. & Thatcher, N. (2004). Quality of life ass essment in advanced lung cancer: Considerations for evaluation in patients rece iving chemotherapy. Lung Cancer, 46, S41-S47. Greiner, K., Perera, S., & Ahluwalia, J. (2003). Hospic e usage by minorities in the last year of life: Results from the National M ortality Followback survey. Journal of the American Geriatric Society, 51, 970-978.

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40 Griffin, J., Nelson, J., Koch, K., Niell, H., Ackerman, T. & Thompson, M. et al (2006). End of life care in patients with lung ca ncer. Chest, 123, S312-S331. Higginson, I. & McCarthy, M. (1989). Measuring symptoms in terminal cancer: Are pain and dyspnea controlled? Journal of the Royal Society of Medicine, 82, 264-267. Lenz, E., Pugh, L., Milligan, R., Gift, A., & Suppe, F. (1997). The middle-range theory of unpleasant symptoms: an update. Advances in Nursing Science 19 14-27. Lobchuk, M., Degner, L., Chateau, D. & Hewitt, D. (2006) Promoting enhanced patient and family caregiver congruence on lung can cer symptom experiences. Oncology Nursing Forum 33, 273-282. Lutz, S., Norrell, R., Bertucio, C., Kachnic, L., Joh nson, C. & Arthur, D., et al (2001). Symptom Frequency and severity in patients with met astatic or locally recurrent lung cancer: A prospective study using the Lung Cancer Sy mptoms Scale in a community hospital. Journal of Palliative Medicine 4, 157-165. Manning, H & Schwartzstein, R. (1995). Pathophysiology of dyspnea. The New England Journal of Medicine 333 1547-1553. McGuire, D. (2004). Occurrence of cancer pain. Journal of the National Cancer Institute Monographs 32 51-56. McMillan, S. (2002). Presence and severity of constipa tion in hospice patients with advanced cancer. American Journal of Hospice and Palliative Care 19 426-430. McMillan, S. (2004). Assessing and managing opiate-induced co nstipation in adults with cancer. Cancer Control 11, S1 3-9. McMillan, S., Williams, F. (1989). Validity and relia bility of the Constipation Assessment Scale. Cancer Nursing 12, 183-188.

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41 McMillan, S., Weitzner, M. (1998). Quality of life in cancer patients: Use of a revised hospice index. Cancer Practice 6 282-288. McMillan, S., Weitzner, M. (2000). How problematic are various aspects of quality of life in patients with cancer at the end of l ife? Oncology Nursing Forum 27 817-823. McMillan, S., Small, B. (2007). Using the COPE interv ention for family caregivers to improve symptoms of hospice homecare patie nts: A clinical trial. Oncology Nursing Forum 34 313-321. Moody, L., Lowry, L., Yarandi, H., & Voss, A. (1997). Psychophysiologic predictors of wearning from mechanical ventilation in chr onic bronchitis and emphysema. Clinical Nursing Research 6, 311-330. Moody, L. and McMillan, S. (2003). Dyspnea and quality of life indicators in hospice patients and their caregivers. Retrieved from http://www.hqlo.com/content/1/1/9. Oi-Ling, K., Man-Wah, D., Kam-Hung D. (2005). Symptom di stress as rated by advanced cancer patients, caregivers and physicians in the last week of life. Palliative Medicine 19 228-233. Paice, J. (2004). Assessment of symptom clusters in peo ple with cancer. Journal of the National Cancer Institute Monographs 32 98-102. Pfeiffer, E. (1975). A short portable mental status que stionnaire for the assessment of organic brain deficit in elderly patients. Journal of American Geriatrics Society 23 433-441.

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42 Portenoy, R., Thaler, H., Kornblith, A., Lepore, J., Friedlander-Klar, H., Kiyasu, E., et al. (1994). The Memorial Symptom Assessment Scale : An instrument for the evaluation of symptom prevalence, characteristics and dis tress. European Journal of Cancer, 30A 1326-1336. Potter, J., Hami, F., Bryan, T. & Quiqley, C. (2003). Symptoms in 400 patients referred to palliative care services: Prevalence and pa tterns. Palliative Medicine, 17, 310-314. Potter, J., Higginson, I. (2004). Pain experienced by lung cancer patients: a review of prevalence, causes and pathophysiology. Lung Cancer 43 247-257. Ripamonti, C. & Bruera, E. (1997). Dyspnea: pathophysiol ogy and assessment. Journal of Pain and Symptom Management 13 220-232. Sarna, L., Brown, J., Cooley, M., Williams, R., Che rnecky, C., & Padilla, G., et al (2005). Quality of life and meaning of illness of women w ith lung cancer. Oncology Nursing Forum 32 E9-E19. Silvestri, G., & Mahler, D. (1993). Evaluation of dys pnea in the elderly patient. Clinics in Chest Medicine, 14 393-404. Stewart, M. (1977). Measurement of clinical pain. In A Jacox (Ed.), Pain: A sourcebook for nurses and other health professionals (pp. 107 -136). Boston: Little, Brown, and Company. Tischelman, C., Degner, L., & Mueller, B. (2000). Mea suring symptom distress in patients with lung cancer: A pilot study of experi enced intensity and importance of symptoms. Cancer Nursing 23, 82-90.

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43 Tishelman, C., Degner, L., Rudman, A., Bertilsson, K. Bond, R., & Broberger E., et al (2005). Symptoms in patients with lung carcinom a: distinguishing distress from intensity. Cancer 104 2013-2021. Wang, X., Cleeland, C., Mendoza, T., Engstrom, M., Li u, S., & Xu, G, et al (1999). The effects of pain severity on health-related qua lity of life: A study of Chinese cancer patients. Cancer 86, 1848-1855. Wilkie, D., Huang, H., Reilly, N., Cain, K. (2001). No ciceptive and neuropathic pain in patients with lung cancer: a comparison of pain quality descriptors. Journal of Pain and Symptom Management 22 899-910. World Health Organization. (2007). Retrieved July 6, 2007, fr om http://www.who.int/cancer/palliative/painladder/en/

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44 Appendices

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45 Appendix A SHORT, PORTABLE MENTAL STATUS QUESTIONNAIRE Eric Pfeiffer, M.D. Instructions: Ask questions 1-10 in this list and record all answers. Ask question 4A only if patient does not have a telephone. Record total number of errors based on ten questions. + 1. 2. 3. 4. 4A. 5. 6. 7. 8. 9. 10. 1. What is the date today? ______________________________________ month day year 2. What day of the week is it? ___________________________________ 3. What is the name of this place? ________________________________ 4. What is your telephone number? _______________________________ 4A. What is your street address? _________________________________ (Ask only if patient does not have a telephone) 5. How old are you? ___________________________________________ 6. When were you born? ________________________________________ 7. Who is the president of the U.S. now? ___________________________ 8. Who was president just before him? _____________________________ 9. What was your mother’s maiden name? __________________________ 10. Subtract 3 from 20 and keep subtracting 3 from each new number you get, all the way down. ________________________________

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46 Appendix B KARNOFSKY PERFORMANCE STATUS SCALE 100 Normal; no complaints; no evidence of disease. 90 Able to carry on normal activity; minor signs or sympto ms of disease. 80 Normal activity with effort; some signs or symptoms o f disease. 70 Cares for self; unable to carry on normal activity o r to do active work. 60 Requires occasional assistance, but able to care for m ost needs. 5 0 Requires considerable assistance and frequent medical ca re. 40 Disabled; requires special care and assistance. 30 Severely disabled; hospitalization indicated although death not imminent. 20 Very sick; hospitalization necessary; active suppor tive treatment necessary. 10 Moribund; fatal processes progressing rapidly. 0 Dead

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47 Appendix C PAIN NUMERIC RATING SCALE Directions: If zero is NO pain and 10 is the WORST PO SSIBLE PAIN, where would you place your pain right now? 0 1 2 3 4 5 6 7 8 9 10 No Worst Pain Possible Pain

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48 Appendix D DYSNPNEA INTENSITY RATING SCALE Directions: If zero is NO shortness of breath and 1 0 is the WORST POSSIBLE shortness of breath, where would you place your shortness of brea th right now? 0 1 2 3 4 5 6 7 8 9 10 No Worst Shortness Possible Of Breath Shortness of Breath

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49 Appendix E HOSPICE QUALITY OF LIFE INDEX-REVISED 1998 The questions listed below will ask about how you are feel ing at the moment and how your illness has affected you. Please circle the number on the line under each of the questions that best shows what is happening to you at the pre sent time. 1) How tired do you feel? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 2) How well do you sleep? not at all 0 1 2 3 4 5 6 7 8 9 10 very well 3) How breathless do you feel? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 4) How well do you eat? poorly 0 1 2 3 4 5 6 7 8 9 10 very well 5) How constipated are you? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 6) How nauseated/sick do you feel? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 7) For Men: How masculine do you feel? For Women: How feminine do you feel? not at all 0 1 2 3 4 5 6 7 8 9 10 extremely

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50 Appendix E (Continued) 8) Do you have enough physical contact with those you care about? (Touching, holding hands, hugging or other physical contact) none 0 1 2 3 4 5 6 7 8 9 10 a great deal 9) How sad do you feel? very sad 0 1 2 3 4 5 6 7 8 9 10 not at all 10) Do you believe that each day can still hold some good? not at all 0 1 2 3 4 5 6 7 8 9 10 believe strongly 11) How worried do you feel about what is happening to you? very worried 0 1 2 3 4 5 6 7 8 9 10 not at all 12) How worried do you feel about your family and friends? very worried 0 1 2 3 4 5 6 7 8 9 10 not at all 13) How angry do you feel about what is happening to you? very angry 0 1 2 3 4 5 6 7 8 9 10 not at all 14) How lonely do you feel? very lonely 0 1 2 3 4 5 6 7 8 9 10 not at all 15) How satisfied do you feel with your ability to concentr ate on things? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied

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51 Appendix E (Continued) 16) How meaningful is your life? not at all very meaningful 0 1 2 3 4 5 6 7 8 9 10 meaningful 17) How much enjoyable activity do you have? none 0 1 2 3 4 5 6 7 8 9 10 a great deal 18) How satisfied do you feel about the amount of usual daily activities you are able to do? (job, housework, chores, child care etc.) very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 19) How satisfied are you with your level of independence? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 20) How satisfied are you with the support you receive from family and friends? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 21) How satisfied are you with your social life? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 22) How satisfied are you with the physical care that you a re receiving? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied

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52 Appendix E (Continued) 23) How satisfied are you with the emotional support you ge t from your health care team? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 24) How satisfied are you with your relationship with God (h owever you define that relationship)? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 25) How satisfied are you with the spiritual support you get from your health care team? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 26) Do your surroundings help improve your sense of well-being ? not at all 0 1 2 3 4 5 6 7 8 9 10 very much 27) How much do you worry about your living expenses/finances? a great deal 0 1 2 3 4 5 6 7 8 9 10 not at all 28) If you experience pain, how completely is it relieve d? no relief 0 1 2 3 4 5 6 7 8 9 10 complete relief How bad is your pain when it is at its worst? no pain 0 1 2 3 4 5 6 7 8 9 10 worst possible


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The relationships among pain, dyspnea and constipation to quality of life in lung cancer patients enrolled in a hospice program
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ABSTRACT: There is evidence of a relationship between pain and associated symptoms, specifically constipation and dyspnea, and quality of life. Literature supports that endstage lung cancer patients suffer more symptoms than those with other types of cancers, and the course of treatment is primarily palliative, as many of these diagnosed patients cannot be cured. The purpose of this secondary analysis of data was to evaluate the relationships between pain and other common symptoms in end stage lung cancer patients in hospice care, and the relationships among pain, dyspnea, constipation and quality of life. The study sample included fifty lung cancer patients admitted to a hospice program, reporting pain. A series of Pearson's correlations were used to analyze relationships between the variables pain intensity, pain distress, dyspnea intensity, dyspnea distress, constipation intensity and the relationships of these variables with quality of life. The results showed positive significant correlations between pain intensity and pain distress (r = .44, p = .002), dyspnea intensity and dyspnea distress (r = .47, p = .001), and constipation intensity and quality of life (r = -.57, p = .013). Pain and the relief of pain have been studied extensively in cancer patients, yet little research has been done in the way of side effects of opioid use, specifically constipation. This study reinforces to nursing the importance of a thorough assessment upon admission to hospice, and at each subsequent nursing visit, which includes a bowel habit history, current medications in use, potential risk for developing constipation and management of constipation once it is present. Hospice patients with lung cancer are reporting a decrease in quality of life secondary to constipation. Prevention or rapid alleviation of this symptom will provide comfort and allow the patient to focus on important end of life tasks.
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