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Symptom Burden of Gastrointestinal Stromal Tumors Loretta Williams, PhD, APRN-CNS, AOCN University of Texas MD Anderson Cancer Center Department of Symptom Research Assistant Professor Collaborators • • • • • Katherine Gilmore, BA Araceli Garcia-Gonzalez, MD Charles Cleeland, PhD Peter Pisters, MD Jonathan Trent, II, MD, PhD Gastrointestinal Stromal Tumor • Gastrointestinal stromal tumor (GIST) is a rare sarcoma. – Arises from mesenchymal cells of the GI tract – 94% of tumors are c-kit (CD117) mutation positive • In recent years, treatment outcomes have improved with new therapies. • The symptom burden of GIST and its treatment has not been described. Acín-Gándara et al. (2012). Cir Cir,80, 44-51. Caterino et al. (2011). World J Surg Oncol, 9, 13. Nowain et al. (2005). J Gastroenterol Hepatol, 20, 818-824. Purpose of Research The aim of this study was to describe the experience of symptoms for patients with GIST. Story Theory • • • • Narrative process Listener and storyteller Intentional dialogue Sharing the experience of a complicating health challenge • Clear and understandable way Smith &Liehr. (2008). Middle Range Theory for Nursing: Second Edition. Pp. 205-224. Symptom Burden Symptom burden is the combined impact of disease- and treatment-related symptoms on the ability of individuals to function as they did prior to the onset of illness. Cleeland. (2007). J Natl Cancer Inst Monogr, 37, 16-21. Methods • • • • • • • • • Descriptive, exploratory qualitative study Cross-sectional IRB Approval Single qualitative audio-taped interview Descriptive, exploratory content analysis Themes confirmed by 2 other researchers 20-item MD Anderson Symptom Inventory Single-item quality of life scale Clinical and demographic data collected from medical record Interview Guide • Tell me what it is like for you to have GIST now. – What symptoms are you experiencing? – How are these symptoms impacting your life? • What did you experience in the past since you became sick or were diagnosed with GIST? • What do you see happening in the future? Smith &Liehr. (2008). Middle Range Theory for Nursing: Second Edition. Pp. 205-224. Cleeland. (2007). J Natl Cancer Inst Monogr, 37, 16-21. Sample Characteristics • Purposive sample • Pathologically-confirmed diagnosis of GIST • Large comprehensive cancer center, south central United States • > 18 years of age; English speaking • No medical condition or impaired performance precluding participation in 30 minute interview • No diagnosis of active psychosis or severe cognitive impairment • No active treatment for a second malignancy • Informed consent Sample Demographics N = 20 Age Male Gender Married Caucasian Completed College Currently Not Employed 57.9 years (sd=13.1) 11 (55%) 14 (70%) 17 (85%) 11 (55%) 12 (60%) Sample Clinical Characteristics Months since diagnosis Primary Disease Location Stomach Small Intestine Other Current tyrosine kinase inhibitor therapy Currently responding to therapy ECOG Performance Status = 0 Patient-rated quality of life 45.9 (53.3) 9 (45%) 7 (35%) 4 (20%) 17 (85%) 11 (55%) 7 (35%) 8.0 (sd=2.3) Patient-Rated Symptom Severity Mean Fatigue 2.35 Standard Deviation 2.434 Disturbed Sleep 2.05 2.982 Drowsiness 1.30 1.867 Dry Mouth 1.15 1.663 Lack of Appetite 1.00 1.654 Patient-Rated Symptom Interference Mean General Activity 2.05 Standard Deviation 3.103 Work 1.85 3.100 Enjoyment of Life 1.20 2.142 Walking 1.10 1.744 Mood 0.95 1.905 Relations with Others 0.30 1.129 Themes • • • • • Symptoms and Diagnosis Symptoms and Treatment Costs of Treatment Isolation Advice for Other Patients Symptoms and Diagnosis • Long-standing symptoms • Meaning of symptoms • Delayed or incorrect diagnosis Participant Quotes “Maybe a couple years prior to the event (diagnosis), . . . I was having low blood levels. . . . They’d give me iron and my blood would come back up. And then in six months it would be down. I had had some ulcer problems way in the past, so they were looking at my stomach, . . . but they never did find anything.” 68-year-old male “I started vomiting to the point that sometimes I was driving and I would have to stop and vomit there in the middle of the road. . . . (The doctor said,) ‘There’s nothing wrong with you. You’re a hypochondriac. It’s just that your mother passed away. There’s nothing. You’re very healthy.’ . . . I said, ‘. . . I feel like I’m going to faint.’ And he says, ‘Well, it’s because you don’t eat well because you’re always on the road.’” 62-year-old female Symptoms and Treatment • Symptoms from treatment are tolerable if treatment controls disease • Thankful that treatment is available • Prognosis better than 10 years ago Participant Quotes • The small side effects I’ve had are nothing in comparison if it’ll keep that GIST away from me. It’s a small price to pay. 43-year-old female • It’s somewhat of a miracle drug, that it’s just clinically available, or clinical trials (ended) maybe ten years ago but widely used only like eight years. And before the success of this drug . . . with GIST, . . . you died when your prognosis wasn’t very good. The prognosis is much, much better now. 56-year-old male • I’m just so thankful . . . that when you are diagnosed, it’s not a death sentence. There is Gleevec. There are other drugs. There is surgery. . . . Ten years ago things weren’t so good for GIST patients, so I consider myself very fortunate. 62-year-old female Costs of Treatment • Symptoms from treatment interfere with work and other activities • Financial costs – Specialist care – Travel for care – Treatment itself Participant Quotes • I had to get up to go to work, but I just didn’t feel like it. I practically was dragging myself to work. 62-year-old female • I used to go jogging and things like that. I can’t jog or anything like that. I go out and still do the yard, but that tires me out. 68-year-old male • Financially, I am just about wiped out. . . . I have cancer, and the stock market didn’t do any good, so I worry. . . . I’m aware every time I come down here how expensive it is. 65-year-old female Isolation • • • • Rare disease No one understands Specialist care Advice from other patients Participant Quotes • “When I first came down with GIST early on, I wanted so badly to talk to somebody that I could share my feelings and my thoughts with.” 65-year-old male • “I’ve got to go where folks treat this thing that seem to know what they’re doing.” 68-year-old male Advice for Other Patients • • • • Don’t ignore symptoms Push for a diagnosis Find a specialist for treatment Utilize online support group Participant Quotes • “This is a specialized disease that requires somebody that really gets into it, who has the facilities, the research, and all that to do something.” 68-year-old male • “Find a support group so you can see what’s happening to other people and know that different medications have different side effects for different people. You need support for sure.” 65-year-old male Implications for Research • Identify symptom burden across disease and treatment trajectory in larger samples of patients • Define unique clusters of symptoms to facilitate GIST diagnosis • Develop and test effective methods to manage symptoms and maintain patient functioning • Explore usefulness of online disease support groups for rare diseases