Common Symptoms Experienced Among Patients with Colorectal Cancer, and Barriers to Reporting Symptoms or Distress: the Staff Perspective 1,2Sussanne 2Hans
Börjeson RN, PhD, Associate Professor, Starkhammar MD, PhD, Associate Professor, 1Carina Berterö, RNT, PhD, Professor.
1Department of Medical and Health Sciences, Division of Nursing Science, Faculty of Health Sciences, Linköping University, SE-581 85 Linköping, Sweden, 2Department of Oncology, Linköping University Hospital, SE- 581 85 Linköping, Sweden.
Abstract The present study was designed to qualitatively identify and describe, from the staff members’ perspective, the most common symptoms among patients diagnosed with colorectal cancer, and discover if there were any barriers to reporting symptoms or distress.
Key Word: Colorectal cancer, symptoms, staff members, barriers
Four focus groups were arranged with staff members working with chemotherapy in patients with colorectal cancer. The focus groups were audio-taped and verbatim transcribed. All the transcripts were analysed through a continuous process of reading the text and following the principles of qualitative content analysis. The analysis identified six symptoms/forms of distress as the most common among patients with colorectal cancer, whereas four symptoms were typically somatic. The symptoms/forms of distress were fatigue, changed bowel habit, changed sense of taste/nausea, painful distress, change as a person, and uncertainty. The barriers reported by the staff members were related to: how you ask the answers given, and time as an obstacle. These barriers give a clear picture about the difficulties in handling more mental and existential issues, especially highlighting that there are no guidelines to follow and the time aspect is a hindrance in certain ways.
Correspondence to: Carina Berterö, RNT, PhD, Professor, Department of Medical and Health Sciences, Division of Nursing Science, Faculty of Health Sciences, Linköping University, SE-581 85 Linköping, Sweden. E-mail:
[email protected] Tel: +46 10 1037768, Fax: +46 13 123285
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In conclusion, this study elucidates symptoms and forms of distress that are less frequently reported in the literature, such as uncertainty and being changed as a person. These symptoms are, with reference to the evidence-based tradition, vaguer and less studied than the other symptoms highlighted in this and other studies, but may be even more important to focus on in future research, both from the perspective of the caregiver, the next of kin, and the patient.
Introduction Colorectal cancer (CRC) is a major health problem worldwide. It is the third most common cancer, and is more prevalent in developed countries. CRC is equally common in men and women and is also a disease of aging; about 90 % of cases occur in persons 50 years or older.1,2 Characteristic symptoms of colorectal cancer are related to the position of the tumour. The principal symptom is changed bowel habit; constipation alternating with diarrhoea and often blood and slime in the faeces. Sometimes there are increased intestinal sounds and a stretched abdomen. Right-sided tumours of the colon presents less intestine symptoms but often show iron deficiency, anaemia, weight loss, and reduced general condition. A tumour in the leftsided colon is often indicated by those principal symptoms from the intestine. These symptoms are more common in distal intestine tumours. Typical symptoms of rectal cancers are changed bowel habit, slime in the faeces, and pain /and or rectal bleeding. The addition of preoperative radiotherapy to the treatment of rectal cancer and adjuvant or novel palliative chemotherapy of CRC have been important contributing factors to the emerging improved prognosis. All these treatment strategies should be tailored to the patient’s individual needs.1,3,4 Successful palliative chemotherapy treatment may have a duration of up to 1-2 years. Both the disease itself and the treatment give distressing symptoms and side-effects.5, 6 Patients with CRC can experience a variety of symptoms. Treatment can exacerbate pre-existing symptoms and most patients already have disease-related symptoms before treatment.7 These symptoms put together could be described as the ‘symptom burden’, which is defined as the subjective, quantifiable prevalence, frequency, and severity of symptoms placing a physiological burden on patients, and producing multiple negative, physical, and emotional patient responses.10 The symptom burden imposed by cancer- and/or treatment- related symptoms can be substantial and may have a great impact on
patients’ daily lives. There is a need for more knowledge about what problems and needs for nursing care these patients have. According to Dodd et al.,8 effective symptom relief should include consideration of three issues: the person’s experiences of the symptom, choice of strategy for treatment, and effects on the person’s function, health and quality of life. As part of a larger study about evidence-based treatment/nursing for CRC patients, the present qualitative study was conducted in order to identify and describe, from the staff members’ perspective, the most common symptoms experienced among those patients, and barriers to reporting symptoms or distress.
Methods In order to understand how the distress/symptoms of patients with CRC are perceived by staff members, and to establish whether there are any barriers to reporting these problems a qualitative research design was considered.9 A focus group interview/discussion is ideal for exploring people’s experiences, perceptions, and options, and is often productive and appropriate for obtaining a great deal of information.10
Sample In 2008, four focus group interviews were conducted with 20 staff members working with CRC patients having chemotherapy. The inclusion criteria entailed: the professionals had at least 6 months’ experience of working with this type of patient, and that they were from different professions. The four focus groups contained one group with enrolled nurses, and three groups with nurses and physicians, but the physicians were in the minority. Two of the focus groups met at a university hospital and the other two met at a county hospital. All participants received written and oral information about the study and gave written informed consent to participation. Approval to conduct this study was granted from the Research Ethics Committee at Linköping University, Sweden.
Data Collection Pairs of trained moderators led the focus groups. The
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principal moderator asked the questions and facilitated the discussion, and the assistant moderator concentrated on logistical issues such as making a “flow-chart” and observing non-verbal communication. In each session, notes were taken and the session was also audio-taped. The session lasted between 1.5 to 2 hours. The interview/discussion guide included questions about the following topics; what types of distress/ symptoms are common among patients with colorectal cancer from your experience as a staff member? How does the next of kin/patient describe the distress/symptoms of the patient? Are there any distress/symptoms that are harder to report? Finally, are there any barriers among the patient, next of kin, or healthcare professionals to reporting a distress/symptom? Clarifying questions were asked during the session.9 The participants were encouraged to speak spontaneously without interrupting one another.10
Data Analysis Tapes were transcribed verbatim. The analysis was a continuous process of reading the text and following the principles of qualitative content analysis, aiming to obtain valid inferences from texts.11 The analyses were based on openness to variations in data, and a search for patterns, themes, regularities, and contradictions by comparing statements from the different focus groups.12 The transcripts were carefully and thoroughly read and re-read line by line. The initial analytic step is coding; codes identify segments of the texts according to relevant themes, which are derived from the research question. Those themes evolved (added to, deleted, and merged) as the re-reading continued and analysis progressed.9,11,12 In order to increase the trustworthiness of the findings, ‘investigator triangulation’, with analysis of the data by two researchers independently, was used.9 This showed strong agreement. If necessary, findings were discussed until consensus was reached.
Results Six symptoms/causes of distress were identified during the analysis as being the most common among patients with CRC from the staffs’ perspective. Four symptoms were typically somatic, one was a mix of soma and mental effects, and the last one was a symptom/distress presenting the mental part. These symptoms/causes of distress were fatigue, changed bowel habit, changed
senses of taste/nausea, painful distress, change as a person, and uncertainty. Two barriers were identified: How you ask the answers given and Time as obstacle. Complementary quotes providing evidence of our results are presented.
Fatigue All participants mentioned that fatigue was a symptom described by all patients. This fatigue was described as the patient being more tired than before and not having the same energy. It was not only physical tiredness; fatigue was expressed as mental tiredness as well. Many patients experienced fatigue from the start, irrespective of treatment, but many of them recognized the difference in fatigue due to post-surgical or post-treatment causes. There was agreement among the participants that fatigue was often the somatic symptom first mentioned by the patients, and during the course of the disease this fatigue could be caused by diarrhoea and/or problems with infections. This type of fatigue can be very troublesome and may also be a source of irritation between spouses, since the person with the diagnosis cannot manage to take part in daily life as before. “… something that everybody mentions is fatigue … that they are more tired than before … they do not have the same energy … they all mention this” (Focus group L1)
Changed bowel habit Almost all of the participants said that the disease often started with a variety of symptoms, such as changed bowel habit, including constipation alternating with diarrhoea, sometimes with increased intestinal sounds and a stretched abdomen. These problems could also be experienced after surgery. If the patient had a stoma there could also be issues regarding leakage and odour. Some thoughts were expressed by the participants that having a stoma could also affect sexual activities, since there was changed bowel habit and a risk of leakage. Changed bowel habit, no matter whether related to a stoma or not, could cause social isolation, hence the patient might worry about the bowel and experience frequent diarrhoea, and running evacuation of the bowels. Patients might worry about not managing to get to the toilet or that they would “meet with misfortune.”
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The participants speculated that these issues could affect the patients in such a way that they would avoid going outside or travel. Changed bowel habits such as flatulence can also affect the person and contribute to isolation. According to the participants, many patients endured severe diarrhoea as they thought that it was one of the side-effects of the treatment. The patients also seemed anxious to take some medication for this diarrhoea, and thus they might end up with constipation. Pain in the bowel/stomach could be a symptom as well, due to the disease itself or after surgery/treatment. “... these problems… pain in the bowel … difficulties with faeces (diarrhoea vs. constipation)” (Focus group J2) “… they have received drugs for treating the diarrhoea … but they do not dare to take them … they are afraid to be constipated” (Focus group L2)
Changed senses of taste/nausea Something often stated by the participants was that the patients did not enjoy eating; they did not feel peckish, the food did not taste good (changed sense of taste) or they experienced nausea. Eating was seen as an important task and people around them persistently asked them to eat. They had no appetite and they did not enjoy the food.
sick and vomit for several days. There was a common expectation that it was normal to feel sick when having chemotherapy - like cures like. A concluding remark by the participants was that if the patients felt very sick and vomited, it could cause problems with nutrition. “… it is about the appetite … and sometimes they cannot keep the food down (vomiting) … it causes them nutritional problems” (Focus group J1)
Painful distress The participants in the focus groups stated that some of the patients were in pain; even dreadful pain. This could be pain in the stomach, but also troublesome chemotherapy-induced neuropathy and pain lasting the rest of their lives. The patients did not comment on their problems, but when they showed their hands and feet they looked terrible and were painful, which is a known side-effect of some cytostatic drugs. “ 1 .… I met a patient yesterday … he had late sideeffects … neuropathy … and it was hard as he said that he had not been informed about this before the treatment … I do not know … it is really difficult … 2. No, we do not say anything about late side-effects … at least .. . I have never …
“4 .… this issue about appetite and changed sense of taste … // there are quite a lot that do not enjoy food anymore.
3. No, it feels like a kind of terrifying thing to say …” (Focus group L1)
5. Exactly…. due to chemotherapy … it does not taste the same…” (Focus group L2)
Changed as person
The participants declared that as staff members they also focused on eating. It is important that the patients eat so they do not lose weight. There is a great focus on weight. This issue of not losing weight can put the patients under stress. The staff tried to defuse the issue by telling patients they did not need to weigh themselves more than once a week. Nausea related to treatment was common and the participants mentioned that often the patients thought that they would feel sick and that it was a part of the treatment. Mostly, the patients were prepared for feeling sick. The patients accepted feeling nausea and could feel
Some participants reflected that there were bodily changes in the patients. The patients could change in appearance with growing thinness or flabbiness. The hair could become straggly, thinner, or even be lost. Some patients got skin problems/eruptions and struggled with abscesses, and some had pimples over the whole face. They did not look as they usually do; they were not fully recognizable in terms of appearance but were still the same people inside. “ … still…even though I do not have any hair, perhaps I am like a ball caused by cortisone, there is a different appearance … I am still ... the children do not recognize
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their dad or mum … // it is important to show respect” (Focus group J2) Mentally the patients become more sensible and were not as stable as before. Some participants also mentioned that patients’ memory was affected by treatment; they did not remember things. The participants also said that the patients were cognitively affected; they could not follow conversations in the same way as before and did not have the same control of the situation. “… when they get chemotherapy etc … they are cognitively affected, as I interpret it, more than I believed … they are not just tired//… but they do not have the same control anymore …” (Focus group L1)
Uncertainty Uncertainty was an issue mentioned frequently by the participants. They stated that the majority of the patients felt uncertainty or anxiety, but this was not focused on in the caring encounters; the focus was on medical issues/ treatment. As staff members, we do not highlight this uncertainty and sometimes it feels a little strange that no existential issues are forwarded by the patients. These feelings of uncertainty come out later. The patients worried and had sleepless nights, which could also contribute to fatigue. There were thoughts about what the physician had really said. The participants stated that the patients could be nervous or troubled and there was a large amount of information for them to grasp. There was a need to pause when having a conversation/giving information so the patients had time to ask questions. Everything was rushed and procedures were in operation; it could seem as if nobody cared. There was no time to lose and all treatments were running and the patients did not have the time to grieve. Another aspect mentioned by the participants was that the patients were very uncertain if there were breaks in the treatment and that this could affect the outcome, hence they kept their physical symptoms secret. There was a confidence in the treatment and the patients endured the side-effects; there was an idea that sideeffects indicated powerful treatment. If you have a serious illness there is no point complaining about minor symptoms. Thus, the patients did not report all their symptoms or how sick they felt, since they wanted the
treatment. The experience of the participants was that very often the patients felt very ill, both mentally and bodily, but they did not want to talk about it. “….they do not really tell how bad it is…. they are afraid not to receive more treatment….” (Focus group J1) The participants stated that the patients were often uncertain and worried, and they were certainly afraid. They were in a totally new situation and they were confronted with a new context; disease, treatment, and a hospital environment. There was a fear of the unknown. To this was added uncertainty; what would happen and how to manage. Some participants had noticed reactions in some patients after treatment was concluded. At that time, everybody thinks that everything is settled and the patient should be happy and pleased, and the people close to the patient demand that the patients should be happy since they are now survivors. This might end up in an emotional conflict. The patients were emotionally confused. They may stick in emotions; they could find it hard to see things positively, or to look ahead and move on with life. The patients felt mentally bad; they felt down in the dumps. It was important that they had the chance to talk to someone and to be given opportunities to call the staff. Sometimes there was a need to talk to an almoner or a psychologist, but this was an unusual occurrence. The participants mentioned that treatment dominated the life of the patients and there were repercussions of the disease and its treatment. The patients and their next of kin swung to and fro between understanding and unrealistic hopes and expectations. The next of kin were often more worried and concerned than the patient; they saw the problem and distress from another perspective. There was a great deal of anxiety and uncertainty in this. The patients could also feel guilt since they were not able to fulfil their duties as they could before the disease. There was a feeling of guilt since the patients thought that they were burdening their next of kin. There were also opposite feelings, feelings of irritation and friction when the patient experienced the next of kin as over-protective. Conflicts could emerge in the family relationships due to these diverse feelings but also due to telling or not telling, supporting or not supporting or having varying experiences of the situation. There were often differences of opinion regarding how affected the patient was by treatment, changes in treatment and pausing treatment.
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Barriers How you ask ― the answers given
much time left … you do not have the time to talk about …(Focus group L1) Time was limited and the continuity varied, so the focus was on ‘practical issues’ so everything could be fitted into the time schedule and could be managed in those few minutes.
Staff members had protocols for focusing on common symptoms related to treatments such as nausea, vomiting, pain, constipation, diarrhoea etc. Usually, the physical symptoms were noted. It was quite obvious that the focus of staff members was on physical symptoms, which was also signalized to the patient and next of kin. The staff felt secure about how to handle these physical symptoms, since there were guidelines. The staff members mentioned that they felt unsecure when they were confronted with issues that they had never come across before or when the symptoms were vague and unclear. It was hard when there was no exact treatment at hand and you do not know where to seek informatiThere could also be symptoms that were seen as trivial by the patients since the staff never asked about them, so they were not worth talking about.
It was a little easier to relate in a caring encounter, but even here time had an effect. The patients could recognize stress in the situation and see that the staff were not interested in their problems. When the staff were stressed they did not manage to be sensitive; there were so many caring jobs to do and they did not manage to take in everything that was said to them and be intensive listeners. When time was experienced as lacking they did not open ‘that window’ if the patients did not ask for it directly.
“ We know … mostly, what kind of symptoms the treatment causes, so you ask about them …” (Focus group J1)
"… on one hand it often feels good when you bring it up but on the other hand you are reluctant ... until you feel you have enough time …” (Focus group L1)
The staff members stated that the patients believed in the treatments and endured the distress they were causing. It was experienced by the staff that the patients did not report symptoms and distress but it was important to do so since such problems could affect the treatment; if the symptoms were very severe there may be a need for a break. Most patients knew about the side-effects of the treatments and related the side-effects to effects on the cancer.
On the other hand, the caring encounter could present more continuity and a relationship could be established between the staff and the patient and the next of kin. This continuity and relationship made it easier to approach sensitive issues without taking extra time into consideration.
Time as an obstacle Another aspect presented as a barrier was time. If there was to be trust, so that the patient would discuss very private issues or distress e.g. existential issues, a relationship was needed. It takes time to build this relationship and continuity. This time aspect was found in the visit to the physician; time was planned to allow discussion of practical issues and physical symptoms. There were many issues to focus on and much information was given, but there was no time left for existential issues. “I know … I give this information about…especially, those treatments that are ahead … well there is not
The staff said that they did not invite the patients to begin a dialogue, due to the time aspect.
Discussion The focus group interviews were found to be suitable as a data collection method. The discussions were relaxed and the participants encouraged each other to express their experiences and diverse views. They confirmed each other’s statements and asked clarifying questions when they had another point of view. Although the participants were not representative of all staff members working with patients with CRC, the findings illuminate important aspects of distress/ symptoms identified among those patients and their next of kin. The focus group methodology also had strengths and weaknesses. A general principle in focus groups is that greater homogeneity is conducive to more open
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communication. Homogeneity is important among participants but it is also an affecting factor regarding the moderator and the group.9 The six symptoms identified during the analysis of the focus group interviews were; fatigue, changed bowel habit, changed senses of taste/nausea, painful distress, change as a person, and uncertainty. Out of these symptoms, four symptoms were identified as somatic. Putting these symptoms together could be described as the ‘symptom burden’, presenting the subjective, quantifiable prevalence, frequency, and severity of symptoms illustrating the physiological causes of distress, and producing several negative, physical, and emotional patient responses.7 Fatigue was mentioned as the most frequently recognized symptom, a symptom/form of distress recognized in most of the patients. Fatigue is a recognized symptom of cancer and cancer treatment.3, 13 Fatigue can be considered as being a general term covering a range of phenomena that are often, but not always, associated with exertion. Fatigue is therefore both intuitively obvious, based on one’s own experience, but also indefinable.14 Two factors are described regarding fatigue; first, the physical factor as exhaustion, or muscle weakness.15 Second, the psychological factor is that decreased capacity for mental exertion causes problems in solving problems and focusing /concentrating on intellectual activities.16 This aspect leads to the symptom/form of distress of being changed as a person, whereas the staff members talked about how the patients were cognitively affected and did not have control over the situation. Changed bowel habit is seen as a symptom of the disease but also as part of the treatment effect. These changed bowel habits could include frequent diarrhoea or flatulence, but could also end up in constipation. In the literature, diarrhoea seems to be in focus more than the other bowel symptoms.17 The staff in the focus groups reported that many patients endured severe diarrhoea since they thought it was one of the treatment side-effects. This highlights the need for thorough patient information so the patients understand the importance of reporting symptoms promptly in order to receive fast treatment.18 Another issue raised by the focus group participants was the possible social isolation caused by the changed bowel habits both for those with and without a stoma. Other studies have shown that faecal incontinence has a negative impact on quality of life.19, but interestingly, a Cochrane review concluded that no statistically significant differences in quality of
life were identified between patients undergoing rectal cancer resection with or without a permanent stoma.20 A well- functioning stoma can allow a better social life compared to a dysfunctional bowel. Changed sense of taste was another issue raised by the focus group participants. Although not frequently mentioned in the literature24, taste changes are wellknown side effects of various chemotherapy regimens such as the FOLFOX and FOLFIRI regimens for CRC. Takimoto and colleagues 21 showed that taste disorders occurred in 18 of 31 patients (58.1%), and in half of the patients the taste disorder also affected the patients’ appetite. Taste changes affect the daily quality of life of the patients’ experiencing and may lead to patient malnutrition.22 Therefore it is a challenge for the healthcare staff since few, if any, effective interventions are available for these problems. Nevertheless, staff need to discuss these symptoms with patients23 , and proper assessment of possible risk factors such as nausea, oral problems, depressed mood, and appetite loss, and concurrent medications may improve the possibilities of adequately preparing the patient for chemotherapy.21 Nausea was, according to the participants, common among patients with CRC. They hypothesized that patients may think that nausea is part of the treatment and therefore accept the symptoms and not report them. In contrast to the area of taste changes, thousands of studies have focused on describing and treating nausea and vomiting related to chemotherapy treatment. However, few studies have focused solely on patients with CRC. A recent study including patients with FOLFIRI and XELIRI chemotherapy reported that up to 22% of the patients had nausea24 despite proper antiemetic prophylaxis with a corticosteroid and a 5HT3 receptor antagonist for acute emesis.25 Unfortunately, the authors do not report if anti-emetics for delayed emesis were provided. Although most chemotherapy agents used in the treatment of CRC can be classified as, at best, giving a moderate risk for nausea and vomiting, it is important to have routines that allow patients to report their symptoms. Preventive anti-emetics are always recommended and breakthrough nausea should always achieve fast relief.26 Painful distress refers to a variety of symptoms and problems. Painful surgery wounds are not a difficult issue; there are guidelines on how to handle them and what drugs to administer.27 The staff mentioned that when the patients showed their hands and feet they might look terrible and painful due to chemotherapy-
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induced problems with fissures and wounds28. Such a dermatological reaction, known as xerosis (dry skin), can also develop into eczema29,30. This xerosis can result in pruritus (itching), pain and burning, which in turn can prevent the patients from sleeping well.3034 These dermatological reactions may also contribute to fatigue. Patients treated with combinations of drugs including Oxaliplatin have the most problems caused by neuropathies; numbness in the fingers and feet. A form of distress that was outlined was changed as a person. These changes focused mostly on physical appearance. Some patients had severe skin problems/ eruptions and were struggling with abscesses. Some had numerous pimples with localised spread and which looked like acne.29,30 Even if these reactions were mild to moderate they might be experienced as very severe by the patient .31-32 The published grading of side effects is determined from a medical perspective, and does not take into consideration the actual impact they have on the patient’s daily life and well-being. The participants stated that uncertainty and or anxiety related to medical issues or treatment was felt by a majority of the patients they met in their daily practice. They were concerned about the patients’ ability to grasp all information provided by the staff, often in busy clinics. They were also concerned that patients did not report side effects because they were uncertain if this would result in a changed treatment plan or a treatment break. The participants brought up the profound impact that anxiety and uncertainty related to the disease and treatment could have on the patients and their families. The patient and family members did not always share the same perspective, which could result in feelings of guilt, irritation, and friction in relations. The participants also mentioned the uncertainty shown by patients when the treatment period ended and they entered the rehabilitation phase. All components of uncertainty raised by the participants in our study were recently highlighted in a literature review34 exploring key aspects of uncertainty experienced by patients diagnosed with breast, prostate, or colorectal cancer. They found that uncertainty comprised three main themes; uncertainty because of limited or lack of information, uncertainty concerning the course and treatment choices related to the disease, and uncertainty related to everyday life and coping with the disease. According to their study, uncertainty is a prevailing experience among all patients diagnosed with cancer and we need to help patients to manage this distress better. Individual assessments of uncertainty and related concepts are needed to obtain
a comprehensive view of patients’ coping process needs. Individual assessment introduced into everyday cancer practice can lead to identification of needs for additional support or information requirements of patients and their families. Two barriers to reporting symptoms or causes of distress were identified: “How you ask - the answers given” and “Time as obstacle”. The staff members described an attitude expressed in relation to the former barrier. They felt insecure talking with patients about vague symptoms/causes of distress or symptoms where no guidelines for treatment were available, and thus preferred to ask the patients about common physical symptoms. The same strategy has been described by Jakobsson et al35 reporting on focus group interviews with nurses and oncologists working within oncology and haematology departments. Also Jacobsen et al 36 , investigating barriers to cancer pain management, highlight unmanageable side effects as one of the main reported problems among physicians involved in cancer pain management. This highlights the need for more research into symptoms that so far have not been studied in depth, and also the importance of including structured assessment for symptoms for which no guidelines are currently available. The staff members in our study stated that the patients did not report symptoms since they were afraid this could affect treatment decisions made by their physician. Patients in a study by Bell37 confirmed this as a source of considerable stress for a number of patients. Jacobsen et al 36 also mentioned that having a number of different physicians across a variety health care settings was an institutional barrier for optimal cancer pain management. In the study by Jacobsson35 the ability to create a relationship between patients and care givers was highlighted as being able to enhance symptom management. This relationship is certainly easier to build if there is continuity in the caring relation.
Conclusion In conclusion, this study of staff members’ experiences of working with patients diagnosed with colorectal cancer and their next of kin confirm results from previous research on common symptoms reported for patients treated with colorectal cancer. It also elucidates symptoms and causes of distress that are less frequently reported in the literature, such as feeling changed as a person and uncertainty. These symptoms are, with reference to the evidence-based tradition, vaguer and
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less studied than the other symptoms highlighted in this and other studies, but may be even more important to focus on in future research, from the perspective of the care giver, the next of kin, and the patient.
Acknowledgements We thank the staff at the oncology departments participating, especially Gunilla Pettersson and Monica Rösliden who participated as moderators in the focus group discussions. We also thank other members of the research team who planned the large project that this study is part of; Cecilia Bladh, Susanne Borén, Viktoria Magnusson, Ursula Falkmer and Mitra Unosson. We are also grateful to the Medical Research Council of Southeast Sweden and the Division of Nursing Science at the Department of Medical and Health Sciences for financial support
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