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ORIGINAL ARTICLES |
From the University of California at San Diego Department of Surgery, UCSD Cancer Center (SLB), La Jolla, California; and the Departments of Nursing Research (MG, GD) and General Oncologic Surgery (SLB, DZJC, CC, RES, LW), City of Hope National Medical Center, Duarte, California.
Correspondence: Address correspondence and reprint requests to: Sarah Blair, MD, University of California at San Diego Department of Surgery, UCSD Cancer Center, 9500 Gilman Dr., #0987, La Jolla, CA 92093; Fax: 858-657-8708; E-mail: slblair{at}ucsd.edu
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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Methods: A purposive sample was identified of patients treated with intrahepatic chemotherapy. Consenting patients completed a demographic tool and the City of Hope QOL Scale/Cancer Patient survey. An in-depth interview on QOL concerns was conducted, taped, and transcribed verbatim. The data from the interviews were coded to identify recurrent themes.
Results: Sixteen patients participated. Physical well-being was maintained. Significantly lower subscale scores were noted for psychological, social, and spiritual domains compared with nonpatient norms (City of Hope volunteers; n = 169). Patients found intrahepatic chemotherapy convenient but were unable to pursue vigorous activity, and their sleep habits changed. Psychologically, patients felt reassured to receive specific therapy to their liver.
Conclusions: Pilot evaluation of QOL in this population revealed changes in physical, psychological, social, and spiritual dimensions. Both disease- and treatment-specific concerns were identified, and the results provide evidence for items to include in a QOL questionnaire specific to this population.
Key Words: Liver metastasis • Regional chemotherapy • Quality of life • Colorectal cancer
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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At present, one study has reported general quality of life (QOL) concerns in patients undergoing chemotherapy for liver metastasis. Allen-Mersh et al.3 randomized patients with unresectable liver metastasis from colorectal cancer to either best supportive care or intrahepatic chemotherapy. After assessing QOL with the general QOL instruments, the Rotterdam checklist, and the Hospital Anxiety and Depression scale, the authors found that patients who received intrahepatic chemotherapy survived longer and maintained a normal QOL for a significantly longer period of time. No study has specifically addressed the unique QOL concerns in patients undergoing regional chemotherapy with an implanted subcutaneous device.
This study was undertaken as a companion study to accompany an ongoing phase II trial currently being conducted at a Southern California cancer center. We were examining the efficacy of using the portal vein as access to the hepatic circulation to deliver regional chemotherapy to patients who have undergone resection of colorectal metastasis. The study protocol and consent forms were reviewed and approved by the institutional review board. Because of the paucity of QOL data available in this area, we undertook a pilot study to more closely describe the unique issues pertinent to this high-risk population. The use of in-depth qualitative interviews was selected to evaluate QOL from the individual patient perspective. This was augmented with quantitative data from a demographic questionnaire and an established QOL questionnaire. On the basis of the resulting data, we are formulating a specific QOL questionnaire for patients undergoing hepatic regional chemotherapy.
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METHODS |
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Interview tapes were transcribed, verified, and corrected and then distributed to members of the analysis team. The qualitative data were analyzed by a team of researchers consisting of three surgeons and three nurse researchers with expertise in QOL and cancer care. The transcripts of interviews were reviewed at team meetings, where content was analyzed on the basis of the method described by Krippendorff.11 The interviews were read, and recurrent themes were identified, coded, and placed into categories. Discussion of content placement and validation of these labels were performed by the analysis team. Categories were arranged into tables by using direct quotes from interviews to illustrate the categories. The entire team examined the tables and revised and reviewed any discrepancies in coding.
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RESULTS |
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Quantitative Data
A comparison to a sample of 169 nonpatient norms (City of Hope volunteers) revealed significantly lower subscale scores for psychological, social, and spiritual, but not physical, well-being in patients undergoing intrahepatic chemotherapy (Table 2). As one would expect in this extremely high-risk population, overall QOL was decreased. Their overall QOL score was only 6.25 ± 2.44. The other domains, such as social, psychological, and spiritual domains, had low scores as well (Table 2). However, the scores for the physical domain were comparable to those of noncancer volunteers. For example, the scores for nausea, fatigue, and appetite change were all >7 of 10, which is similar to scores for noncancer patients (Table 3). These scores are higher than typical scores for cancer patients undergoing chemotherapy.6–9 In contrast, their scores in the psychological domain were particularly low. These scores reflect severe problems with fear of recurrence, second cancer, and metastasis (Table 4). In the area of social well-being, the patients felt they had enough support (score, 7.88 ± 3.40; Table 5) but showed concerns about the distress for their family (4.06 ± 2.89; Table 5). Spiritually, the patients had a great deal of hope (7.69 ± 2.5; Table 6) but also expressed considerable uncertainty (3.88 ± 3.00; Table 6).
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Patients did point out what they described as some nuisances related to having the pump filled every 2 weeks... .you get used to it. You forget. I think a lot is mental. "Oh that thing is there—I better be careful." Afterwards you get adjusted and it’s fine. If I had to go the rest of my life with it because medically I had to, it would be no problem. Course the pump has to be refilled every two weeks regardless of what we do. Well, having to have it filled, having to look at a long needle to fill it with, it’s a nuisance.
Patients also discussed how the pump limited physical contact with others; this was related to concerns about dislodging the pump. Everyone is conscious of it, the liver pump, so they are careful as far as hugging me, or touching or hitting or punching or just playing.
Physical Activities
When patients were questioned about the effect of the pump on physical activities, responses ranged from no changes in current physical activities to limiting leisure activities, and some patients discontinued strenuous physical activities. But the pump itself did not slow me down at all. First I thought that maybe because I had this pump riding on my rib cage that I wouldn’t be able to participate in sports. That was not the case. I was able to play golf and I was able to, believe it or not, swing freely. We had to change our travel; that was our big plan when we retired...to get on the road and travel for about three or four months. You are not out dancing all night long and coming home and taking a shower and going to work. I felt like I couldn’t run. I would just do a real fast walk or if I did run it would be a weird kind of run. My gardening. I can’t get behind the Rototiller like I used to because of the pump. I have to be careful with what I do. Cause it’s in the way. Even though it is implanted it’s still in the way for doing some activities.
Body Image
Several issues specifically related to body image emerged. Patients were concerned about the appearance of their abdomen. I don’t feel like putting on a pair of trunks and going for a swim. You have people staring at you, hey, see that guy over there, he’s going to have a blow up pretty soon (laughs). Because this is huge here.
Because of the size and abdominal wall deformity caused by the pump, patients wore looser clothing. I went out and got clothes that made me comfortable. Yes, now I am just casual and comfortable and its like, "Take me the way I am or don’t take me at all."
Patients who received continuous infusional 5-FU had to carry an external bag of chemotherapy and altered their dress to hide the apparatus. I never go without a baggy shirt because it (the pump) protrudes, it sticks out like a deformity. That bag hanging in you (continuous infusional 5-FU). Sometimes you change the dress you wanted and you don’t want other people to see you have your sack/pocket.
Social Well-Being
In relation to social well-being, patients had concerns with loss of anonymity. Some patients did not want others to know that they had cancer. Well, it’s there, it’s hard to go through airports since I travel all the time without having to tell everybody I have a pump. The biggest problem is telling everybody you have cancer and having to deal with it.
This was not an issue for relationships with significant others. It’s not that much of an intrusion into your private or your social life. Because it is hidden, not like the other one (peripheral pump) where you saw it all the time. Because this one is internal you tend to forget. I think the first maybe two or three weeks I thought about it. My fistula (ileostomy and mucus fistula) interfered with relationships but not the pump. Well, I got married this year so it didn’t affect my wife too much, she accepted it.
Financially, many patients had good insurance and no monetary problems, but some patients were not able to continue working or had trouble maintaining their insurance... .fortunately I had good health insurance, I did work. I’m probably going to go on disability, so I mean, it does affect you. We have to drive a hundred and fifteen miles to get here. So you take the round trip, it’s pretty expensive to keep the car up and for the gas... .he has so many bills and you know, he has to pay the supplement and sometimes we are tight.
Physical Well-Being
Although the patients had high scores on the quantitative questionnaire for physical well-being, the interviews revealed several specific physical concerns related to the hepatic pump. Most patients we interviewed noted changes in their sleep habits. Patients were unable to sleep in certain positions because of physical interference of the pump on the abdominal wall. It’s like sleeping on a big rock. Yes, I had to sleep on my back. It was hard to go from side to side and the left side was definitely out of the question because the pump was there.
Some patients ate less because of their therapy; others felt no effects. No, as a matter of fact sometimes I can’t even tell it’s there. I used to feel that oh my gosh I just ate a huge meal. It really hasn’t affected my appetite. It hasn’t affected the way I eat, except for the stretching of the area in the surgery. The stretching of the skin for the pump would fill my stomach up sooner before. It’s kind of like Winnie, you know, he’s gotta go through the forest and look for the honey pot cause he’s lost his appetite. Well, that was me... .no matter what they made for me I was not hungry.
In the psychological domain, several recurrent themes were noted. Some patients were constantly aware of the pump... .you have to think about it because it’s there. You feel it...80% of the time. Except for the days I was going to get refilled or something. I did not notice it was there, no.
Most patients we interviewed felt reassured that the chemotherapy was going directly to the life-limiting problem, the liver. They were consoled that they were actively participating in treatment. I know that the key is my liver... .the fact that I have a pump that feeds into my liver is important. Whether it worked or not I’m not sure. But yes, whenever you have chemotherapy and you are actively participating in treatment it makes you feel better. And when finally they say you have come to an end...you kind of swallow hard because you say wait a minute, I’m not doing anything anymore and maybe it’s going to come back because of that. I feel like it doesn’t affect my body like the systemic kind does. I realize it’s not killing good cells at the same time. To me it doesn’t seem to be killing good cells like the systemic chemotherapy does.
In a few patients the treatment had failed, and they felt that the presence of the pump was a constant reminder of this failure. Well it’s kind of negative now since it is not used. It has to be maintained every two weeks. Therapy that they are using it for didn’t work out. It is just inconvenient.
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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QOL measurements are more frequently being used as an augmentation to morbidity and survival data to evaluate cancer treatment. Many cooperative groups are including QOL measurements as companions to multicenter trials.15–17 We found only one study that generically examined the question of QOL in patients receiving hepatic regional chemotherapy. The investigators in this trial randomized patients with unresectable liver metastasis from colorectal cancer to hepatic arterial chemotherapy versus palliative care. They measured QOL monthly by using the Rotterdam checklist and the Hospital Anxiety and Depression Scale. Neither tool is specific for cancer patients, but both are validated tools to study physical and psychological well-being.3 Our study is the first to describe the unique issues related to pump therapy and pump implantation in a high-risk population of patients with metastatic colorectal cancer. After completing this pilot descriptive study, we found that we were able to identify specific areas of concern in physical well-being, as well as the social and psychological areas of QOL, that are unique to this population and merit further study.
In this study, we identified a very high-risk population; this population is typical for a tertiary cancer center. Most patients had synchronous liver metastasis and had had previous treatment with 5-FU chemotherapy. At the time of the interview, half of the patients had measurable disease. Predictably, these patients had many QOL concerns. In the qualitative interviews, several specific themes related to intrahepatic treatment emerged. Overall, patients found the treatment to be convenient and liberating, as opposed to systemic treatment, which involves more visits to the hospital, more systemic symptoms, and being tied down to external infusions. Physically, patients indicated that the treatment limited their ability to perform vigorous exercise; this issue was more important in the relatively young patients who still wanted to pursue physically demanding activities, such as using heavy equipment. The presence of a large subcutaneous device implanted in the abdominal wall altered the sleep habits of most of the patients we interviewed. Patients viewed this sequela as a nuisance. Socially, patients adapted their dress because of this protruding device. Interestingly, patients also changed their dress to hide their external pump related to infusional chemotherapy. Psychologically, most patients were reassured by receiving intrahepatic chemotherapy. They felt better that they were still fighting their cancer even after other treatments failed. Patients felt that it was important to give the treatment to the liver directly to fight the life-limiting site of disease.
In conclusion, we successfully completed our pilot evaluation of QOL in patients with metastatic colorectal cancer with intrahepatic chemotherapy and are subsequently creating a specific questionnaire to address their unique QOL concerns and to be used in future outcome studies.
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Footnotes |
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Received for publication March 15, 2002. Accepted for publication September 17, 2002.
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This article has been cited by other articles:
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  E. S. Ong, M. Poirier, and N. J. Espat Hepatic Intra-Arterial Chemotherapy Ann. Surg. Oncol., February 1, 2006; 13(2): 142 - 149. [Full Text] [PDF]
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