Symptom Burden of Gastrointestinal Stromal TumorsLoretta Williams, PhD, APRN-CNS, AOCNUniversity of Texas MD Anderson Cancer CenterDepartment of Symptom ResearchAssistant 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 = 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%)

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)

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

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

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