symptom burden of gastrointestinal stromal tumors loretta williams, phd, aprn-cns, aocn university...
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Symptom Burden of Gastrointestinal Stromal TumorsLoretta Williams, PhD, APRN-CNS, AOCNUniversity of Texas MD Anderson Cancer CenterDepartment of Symptom ResearchAssistant Professor
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Collaborators
• Katherine Gilmore, BA• Araceli Garcia-Gonzalez, MD • Charles Cleeland, PhD• Peter Pisters, MD• Jonathan Trent, II, MD, PhD
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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.
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Purpose of Research
The aim of this study was to describe the experience of symptoms for patients with GIST.
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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.
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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.
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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
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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.
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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
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Sample Demographics
N = 20Age 57.9 years (sd=13.1)Male Gender 11 (55%)Married 14 (70%)Caucasian 17 (85%)Completed College 11 (55%)Currently Not Employed 12 (60%)
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Sample Clinical Characteristics
Months since diagnosis 45.9 (53.3)Primary Disease Location
StomachSmall IntestineOther
9 (45%)7 (35%)4 (20%)
Current tyrosine kinase inhibitor therapy
17 (85%)
Currently responding to therapy 11 (55%)ECOG Performance Status = 0 7 (35%)Patient-rated quality of life 8.0 (sd=2.3)
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Patient-Rated Symptom Severity
Mean Standard
DeviationFatigue 2.35 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
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Patient-Rated Symptom Interference
Mean Standard Deviation
General Activity 2.05 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
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Themes
• Symptoms and Diagnosis• Symptoms and Treatment• Costs of Treatment• Isolation• Advice for Other Patients
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Symptoms and Diagnosis
• Long-standing symptoms• Meaning of symptoms• Delayed or incorrect diagnosis
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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
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Symptoms and Treatment
• Symptoms from treatment are tolerable if treatment controls disease
• Thankful that treatment is available• Prognosis better than 10 years ago
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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
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Costs of Treatment
• Symptoms from treatment interfere with work and other activities
• Financial costs– Specialist care– Travel for care– Treatment itself
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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
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Isolation
• Rare disease• No one understands• Specialist care• Advice from other patients
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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
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Advice for Other Patients
• Don’t ignore symptoms• Push for a diagnosis• Find a specialist for treatment• Utilize online support group
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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
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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
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