Transcript 68-year-old male

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
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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
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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
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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
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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
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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
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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