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Effect on symptom control of structured information given to patients receiving chemotherapy
European Journal of Oncology Nursing, 1, 18, pages 78 - 84
The performance of a planned education model in patients receiving chemotherapy can alleviate the side effects of chemotherapy and thus can increase the quality of the patients' lives. In accordance with this view, this study was conducted with the purpose of examining the effect of planned education given to patients receiving chemotherapy on their symptom control.
The study was quasi-experimental. A sample of 120 patients participated, of which 60 were in the experimental group (EG) and 60 were in the control group (CG). A patient data form and the chemotherapy symptom assessment scale (C-SAS) were used in order to collect the data. Median, Mann–WhitneyUtest and Wilcoxon signed rank test were used to analyze the data.
There were statistically significant decreases in the frequencies of the following symptoms: nausea, vomiting, constipation, pain, infectious signs, problems of mouth and throat, problems of skin and nails, appetite changes, weight loss or weight gain, feeling distressed/anxious, feeling pessimistic and unhappy, unusual fatigue, difficulty sleeping. Also, there were statistically significant decreases in the severity of eleven symptoms and on the discomfort levels of nine symptoms.
In the study, the planned education provided by the health-care providers had a positive effect on the symptom control of patients receiving chemotherapy.
Keywords: Cancer, Chemotherapy, Symptom assessment, Patient education, C-SAS.
Cytotoxic drugs used in chemotherapy affect normal cells in addition to the destruction and prevention of proliferation of cancer cells ( Mihelic, 2005 ). In addition to its curative effects, chemotherapy also produces side effects such as pain, anorexia, cachexia, impaired taste, alopecia, nausea, vomiting, dehydration, mucositis, depression, and anxiety (Coates et al, 1983 and Giordano and Jatoi, 2005). These side effects are mostly temporary and are preventable or can be minimized with appropriate treatment and care ( Coates et al., 1983 ). Inappropriate control of side effects causes patients to give up the treatment, the treatment dose to be lowered, or the treatment to be terminated, while prolonged physical symptoms lead to psychosocial problems in patients ( Kornblith et al., 2003 ).
Symptoms generated by chemotherapy affect morbidity, effective therapy, and quality of life. Thus, health-care professionals, and particularly nurses, have responsibility for the early detection, prevention, and control of these symptoms (Chau et al, 2004 and Kornblith et al, 2003). Assessment of symptoms of chemotherapy is important in terms of detecting the patient's quality of life, determining problematic areas, developing standards of care, and planning, implementing, and improving related nursing activities ( Chen et al., 2008 ). Assessment of symptoms is also important in terms of calculation of care-related costs and determination of doses of drugs to be used in symptom control ( Tina Shih et al., 2007 ). Many studies have stressed the importance of nurses in education to control side effects and in supporting patients in addition to systematic assessment of side effects in patients undergoing cancer chemotherapy (Aslan and Vural, 2006, Williams and Schreier, 2005, and Williams and Schreier, 2004). Symptom control by nurses in patients undergoing chemotherapy positively affects the patients' quality of life (Bahrami and Arbon, 2012 and Bahrami, 2011).
The educational role of the nurse always comes into prominence in symptom management for cancer patients ( Aslan and Vural, 2006 ). Nurses have the responsibility of informing patients about the chemotherapy drugs, potential side effects, and measures to mitigate side effects ( Williams and Schreier, 2004 ). It is very important to inform and comfort patients and to gain their trust by education on symptom control while they are undergoing chemotherapy (Bahrami and Arbon, 2012 and Williams and Schreier, 2004).
Cancer patients require education and knowledge to participate in the decision-making processes, to control their disease and the symptoms associated with the treatment, and to cope with the cancer experience ( Devine, 2003 ). As a consequence of the nurse education model planned according to the patients' needs, the side effects of chemotherapy can be mitigated, patients can take responsibility for their own care, and they can participate in the decision-making process. As a result, their quality of life and adherence to treatment will improve (Aslan and Vural, 2006 and Chau et al, 2004). In the literature, studies on symptom control have yielded beneficial results (Coughlan and Healy, 2008, Williams and Schreier, 2005, and Williams and Schreier, 2004). However, studies related to this topic are insufficient in Turkey. This study is a quasi-experimental one that tests patient educational interventions during chemotherapy, with a secondary aim of focusing on describing symptoms in patients during chemotherapy.
Materials and methods
This quasi-experimental study was carried out with patients taking chemotherapy as either outpatients or inpatients at Erciyes University Mehmet Kemal Dedeman Oncology Hospital, Hematology–Oncology Unit. The sample size was calculated using the study of Aslan and Vural (2006) investigating the reliability and validity of the chemotherapy symptom assessment scale (C-SAS). The minimum number of patients was determined byα = 0.05 margin of error,β = 0.2 (1 − β = 0.8 power) and type-II error. The study sample consisted of individuals older than 18 years who were given inpatient chemotherapy at the hematology unit or outpatient treatment for the first time between April 2010 and February 2011; the patients were able to communicate, and gave consent for their participation in the study. When determining patients for the experimental and control groups, every individual who satisfied the inclusion criteria was randomly included into the study with an equal chance of being selected in either group. A total of 120 patients – 60 trial subjects and 60 control subjects – were enrolled.
Data collection tools
To collect data the following forms were used by the researcher.
Patient information form (PIF):this is a 19-question form requesting information such as age, sex, educational status, marital status, diagnosis, duration of disease, number of courses, chemotherapy regimen, home town, and social support of the patient.
C-SAS: the validity and reliability analysis of the study which was developed by Brown et al. (2001) was performed by Aslan and Vural (2006) . The C-SAS includes the 24 chemotherapy symptoms observed in cancer patients receiving chemotherapy. The first part of the scale includes the frequency of the symptoms, the second part includes severity, and third part includes the degree of discomfort. Frequencies of symptoms are given in yes/no format, symptom severity is scored on a three-point likert-type scale (mild: 1, moderate: 2, severe: 3), and the degree of discomfort is scored on a four-point likert-type scale (none: 0, mild: 1, quite a lot: 2, excessive: 3). Each symptom is assessed individually. High scores indicate elevated symptom severity and degree of discomfort.
During the validity and reliability study performed for the scale by Aslan and Vural (2006) , the scale was first translated from English into Turkish and from Turkish into English by two linguists, and then evaluated by five English-speaking oncologists to assess its validity. The scale was then applied to training groups consisting of five patients each in order to assess whether there were any comprehension-related difficulties. To analyze its reliability, the scale was administered to 409 patients at two oncology centers. According to this study, the Cronbach'sαcoefficient was 0.67, 0.80, and 0.82 for the first, second, and third parts of the scale, respectively ( Aslan and Vural, 2006 ).
The reliability analysis we have performed in the current study determined Cronbachαcoefficients of 0.74, 0.76 and 0.87 for the first, second and third sections, respectively.
The required institutional approval, approval of the institutional ethical committee, and written informed consent of the patients were obtained.
First, the patients were informed about the study, and their written and oral consent was obtained.
The patients in the control group were included in the first stage of the study. The control group consisted of 60 patients who volunteered to participate and were given chemotherapy for the first time. The PIF – which addresses the socio-demographic, clinical, and treatment features of the control group – was completed before the first chemotherapy session, and the C-SAS was completed after the third round of chemotherapy. The researcher performed both sessions face-to-face in a suitable room.
After completing the control group, preparations were made for 60 patients who were eligible for the experimental group, had volunteered to participate in the study, and were about to receive chemotherapy for the first time. First, a meeting was arranged with the authorized personnel in the clinic and a room was reserved that was suitable, silent, comfortable, and away from external stimuli, which would be used for the education session. Prior to the education sessions, we met with the patients' families and other team members to determine the educational need of each patient selected according to the sample criteria, reviewed the medical and nursing records, and collected patient data. In the light of these findings, a personalized, planned educational program was organized for each patient. This educational program was performed as follows.
First educational session:PIFs were distributed to the patients and were completed prior to the educational session. Considering the chemotherapy plan organized by the oncologist, the first session of this personalized and planned educational session was performed prior to the first chemotherapy cycle. Considering the possible side effects of the chemotherapy, during the first educational session the patients were given information on topics including symptoms, underlying causes, prevention, and control. A family member responsible for primary patient care also attended the training sessions. This session lasted for 40–45 min. Patients and family members were encouraged to ask questions during the session, and their questions were answered. A booklet containing the educational topics was provided after the session.
Second educational session:the second training was given to patients and their family members prior to the second chemotherapy cycle, which is generally performed within 30–45 days after the first session. The topics covered during the first session were discussed again. This session lasted for 30–40 min, and emphasis was given to patients' symptoms and their control.
Third educational session:during the third and final educational session, which was given to patients and their relatives prior to the third chemotherapy cycle, the topics covered within the first and second education session were discussed again according to the needs of the patients and their relatives. Similarly, emphasis was given to the symptoms and their control. Any questions from patients and their relatives were answered.
The C-SAS was completed 10 days after the third chemotherapy session.
The oncologist and other team members decided on a particular chemotherapy protocol by considering various factors, including cancer type, stage, overall condition of the patient, and biochemical parameters. Additionally, because the duration of each chemotherapy cycle and post-treatment recovery varies, the time period between any given two chemotherapy cycles is not constant. During this period, the researcher decided on the date of the educational session together with the patients while considering the date of the chemotherapy treatment and collaborating with the oncologist and other team members. Accordingly, this study lasted for approximately 10 months.
Patients and their relatives were willing and active regarding the education. In addition to the support provided by the education booklet, the researcher informed the patients that they can reach the researcher via personal phone contact. Eight patients called the researcher during the first session, and two patients called the researcher after the second session to obtain information by phone. Accordingly, three educational sessions were carried out prior to three cycles of chemotherapy for each patient, and the effect of the given education on the patients was investigated. After the educational sessions provided to the experimental group and data were collected from both groups, a personalized, planned educational session was given to the control group because of ethical requirements.
Educational booklet:we benefited from the literature ( Andersen et al., 2006 ; Daniel et al., 2004 ;Brown et al, 2001, Coughlan and Healy, 2008, Dodd et al, 2001, Giordano and Jatoi, 2005, and Schott et al, 2011), research data (Aslan and Vural, 2006, Evans and Rosner, 2005, and Williams and Schreier, 2004), and clinician and expert opinions and practices in preparing the content of the educational session and in modifying the patient information booklet. The chemotherapy patient information booklet consisted of 18 pages, and covered topics including chemotherapy and pharmacological/non-pharmacological applications required for protection from the side effects of chemotherapy. Information on diarrhea, constipation, differences in taste, problems of the mouth, gingiva and throat, loss of appetite and changes in diet, infection, susceptibility to bleeding, anemia, changes in skin and nails, hair loss, changes in the muscle and nervous system, pain, changes in the urinary tract, sexual problems, emotional changes, fatigue, sleep problems, difficulty in breathing, and eye-related symptoms was given, and pharmacological and non-pharmacological information regarding the control of these symptoms was provided during the educational sessions, in addition to the educational booklet. Necessary information regarding the treatment regimen was given during the first educational session, whereas information regarding the apparent symptoms was given during the second and third educational sessions. Each patient was given this booklet after the first training.
Assessment of data
The SPSS (Statistical Package for Social Sciences) for Windows 16.0 program was used for assessment of the data. Median, standard deviation, frequency, percentages, as well as chi-square, Fisher exact chi-square, Mann–WhitneyUtest, and Wilcoxon paired two samples tests were used. The results were assessed at a confidence interval of 95% and at a significance level ofP < 0.05.
Table 1 shows descriptive data for both groups. There was no significant difference between the experimental group (EG) and the control group (CG) in terms of age, sex, marital status, educational status, inmate status, level of income, residential place, residential hospital place, mode of transportation to hospital, health insurance, and profession.
|Characteristics||Control group (n = 60)||Experimental group (n = 60)||P|
|Educational status||Primary school||37||61.7||29||48.3||0.683|
|Form of transport to the hospital||Private car||44||73.3||46||76.7||0.833|
Comparison of diagnoses between the EG and CG is presented in Table 2 . Acute myeloid leukemia (AML) diagnosis has the first place in both experimental and control groups, with a frequency of 21.7% and 33.3%, respectively. Lymphoma ranked second, with a frequency of 10% in the experimental group and 26.7% in the control group. Breast cancer ranked third with a frequency of 15% in the EG and 5% in the CG. With the exception of patients diagnosed with lymphoma, no significant difference was identified between the study and control groups with regards to diagnosis.
|Diagnosis||Control group (n = 60)||Experimental group (n = 60)||P|
|Acute myeloid leukemia (AML)||20||33.3||13||21.7||0.220|
|Acute lymphoid leukemia (ALL)||3||5.0||5||8.3||0.717|
|Chronic lymphoid leukemia (CLL)||2||3.3||1||1.6||1.000|
When EG and CG were compared in terms of symptom frequency, symptoms of post-treatment nausea and vomiting, constipation, pain, infectious signs, problems with mouth and throat, problems with skin and nails, appetite changes, weight loss or weight gain, feeling distressed/anxious, feeling pessimistic/unhappy, feeling unusual fatigue, and difficulty in sleeping were significantly less common in the EG ( Table 3 ).
|Symptoms||The frequency of symptoms||P|
|Control group n = 60||Experimental group n = 60|
|Nausea and vomiting before treatment||2||3.3||2||3.3||1.00|
|Pain (patient specifies where)||43||71.7||24||40.0||<0.001|
|Shortness of breath||16||26.7||7||11.7||0.64|
|Signs of infection||49||81.7||20||33.3||<0.001|
|Pins and needles/numbness of hands and feet||37||61.7||23||38.3||0.11|
|Problems withthe skin andnails||45||75.0||28||46.7||0.003|
|A sore/sensitive mouth or throat||27||45.0||9||15.0||0.001|
|A change in appetite||46||76.7||22||36.7||<0.001|
|Weight gain or loss||32||53.3||9||15.0||<0.001|
|Feeling unusual fatigue||54||90.0||39||65.0||0.002|
|Irregular periods (female patients)||19||31.7||9||15.0||0.052|
On the other hand, when the EG and CG were compared in terms of symptom severity, severity of post-treatment nausea and vomiting, constipation, dyspnea, appetite change, pain, difficulty in sleeping, headaches, weakness, unusual fatigue, distressed/anxious feelings and (in women) changes in menstrual cycle was significantly lower in the EG than in the CG ( Table 4 ).
|Symptoms||The severityof symptoms||P|
|Control group||Experimental group|
|Nausea and vomiting before treatment||2.0||1.0||–|
|Pain (patient specifies where)||2.0||1.0||0.001|
|Shortness of breath||2.0||1.0||0.035|
|Signs of infection||2.0||2.0||0.171|
|Pins and needles/numbness of hands and feet||1.0||1.0||0.701|
|Problems withthe skin andnails||1.0||1.0||0.405|
|A sore/sensitive mouth or throat||2.0||1.0||0.763|
|A change in appetite||1.0||1.0||<0.001|
|Weight gain or loss||1.0||1.0||0.135|
|Feeling unusual fatigue||2.0||1.0||<0.001|
|Irregular periods (female patients)||2.0||1.0||0.035|
In Table 5 the distribution of the degree of discomfort from symptoms in the EG and CG patients are shown. Degrees of discomfort from symptoms of post-treatment nausea and vomiting, constipation, pain, weight loss and weight gain, weakness, unusual fatigue, headaches, and (in women) changes in menstrual cycle were significantly lower in the EG than in the CG ( Table 5 ).
|Symptoms||The degree of discomfort from symptoms||P|
|Control group||Experimental group|
|Nausea and vomiting before treatment||1.0||1.0||–|
|Pain (patient specifies where)||2.0||1.0||<0.001|
|Shortness of breath||2.0||1.0||0.098|
|Signs of infection||2.0||1.0||0.466|
|Pins and needles/numbness of hands and feet||1.0||1.0||0.586|
|Problems withthe skin andnails||1.0||1.0||0.142|
|A sore/sensitive mouth or throat||1.0||1.0||0.885|
|A change in appetite||1.0||1.0||0.057|
|Weight gain or loss||1.0||0.0||0.022|
|Feeling unusual fatigue||1.0||1.0||<0.001|
|Irregular periods (female patients)||1.0||1.0||0.048|
Many studies have stressed that quality of life may be improved and adherence to the disease and treatment processes may be increased by education (Bahrami, 2011, King, 2006, and Thompson et al, 2005). This study also demonstrated that the education on symptom control given to cancer patients undergoing chemotherapy decreases symptom frequency and severity and the degree of discomfort caused by the symptoms.
Chemotherapy-related symptoms are described as preventable symptoms ( Laugsand et al., 2011 ). In our study “pre-treatment nausea and vomiting” were labeled as anticipation nausea and vomiting, and they may be specified as a learned reaction. In this study, it is noteworthy that frequency of nausea and vomiting prior to treatment was low in both study and control groups. Eckert (2001) reported that the role of nurses is important in defining patients with the potential for anticipation nausea and vomiting, as well as in controlling this symptom. Nausea and vomiting continue to be the most annoying side effects of chemotherapy despite the advances in treatment approaches and prevention strategies ( Eckert, 2001 ). In certain studies acute and chronic nausea and vomiting have an incidence of over 50% despite anti-emetic prophylaxis (Marek, 2003 and Nauright et al, 1999). Our findings indicating a decrease in frequency and severity of post-treatment nausea and vomiting are in agreement with the findings of the study on patients taking cancer chemotherapy by Kav and Akdemir (2004) demonstrating that nausea can be controlled by education. In the study by Aslan and Vural (2006) investigating the effect of education on symptom management in patients taking chemotherapy, a decrease was observed in post-treatment severity of nausea and vomiting. Aranda et al. (2012) investigated the effect of the given pre-chemotherapy education on the symptoms, and detected a decrease in the frequency, severity, and degree of discomfort regarding vomiting in patients who received pre-chemotherapy education. Similarly, a meta-analysis of 116 interventional studies on psycho-educational and psycho-social care has demonstrated beneficial effects of interventions on nausea and vomiting ( Meyer and Mark, 1995 ).
It has been reported that nurses have the opportunity to draw conclusions on chemotherapy-induced nausea and constipation, and to educate patients undergoing chemotherapy and their care-givers, and the results of studies have shown that there has been a decrease in frequency, severity, and discomfort level (Aslan and Vural, 2006 and Bender et al, 2002). The degree of decrease in frequency, severity, and discomfort level of constipation is considerable, and it supports the role of education in symptom control. Andersen et al. (2006) investigated the effects of 6-week exercise on symptoms such as pain, diarrhea, and fatigue. The exercise program in that study was completed under the supervision of a physiotherapist and a specialized nurse. The exercise program decreased treatment-related symptoms such as pain, diarrhea, and fatigue. Another study supported the findings related to diarrhea ( Kav and Akdemir, 2004 ).
Neutropenia is the most significant risk factor for severe infections in patients with cancer ( Dodd et al., 2001 ). Education of patients and caregivers is very important in prevention of infections in neutropenic patients ( Laugsand et al., 2011 ). There are few studies (Coughlan and Healy, 2008 and Larson and Nirenberg, 2004) in the literature on this topic; however, it is noteworthy that in our study the signs of infection were decreased in the EG. In a similar study, the frequency, severity, and degree of discomfort with signs of infection decreased following education ( Aslan and Vural, 2006 ), which parallels the results of our study.
Since most cancer therapies cause oral toxicity, oral care is an important responsibility for oncology nurses ( Larson and Nirenberg, 2004 ). The significance of education of patients by nurses about oral mucositis has frequently been stressed ( Adams, 1996 ; Daniel et al., 2004 ). Some studies have mentioned the importance of developing guidance and editing patient information booklets to prevent oral problems and to increase the quality of care of cancer patients (Chau et al, 2004 and Sainio and Eriksson, 2003). Our study is in agreement with those studies in that reinforcement of care by education decreases the frequency of mouth and throat problems.
A study reported that nutritional education in management of anorexia and cachexia was 35–64% more successful in trial subjects compared with those in the control group ( Giordano and Jatoi, 2005 ). This problem – affecting 40–70% of cancer patients – reportedly affects 2% of chemotherapy, 51% of advanced cancer, and 80% of terminal cancer patients ( Camps et al., 2006 ). Our study demonstrated that nutritional education and dietary consultation when necessary decreases the severity of symptoms of appetite change, weight loss/gain, degree of discomfort from appetite changes, and degree of discomfort from weight loss/gain. Similar results were obtained in the study by Aslan and Vural (2006) .
Pain is a common, multifaceted problem in cancer patients, having psychological, biological, and social impacts ( Valeberg et al., 2008 ). It affects 80–90% of cancer patients, and studies indicate that 40% of patients are not satisfied with their doctors and nurses in pain management ( Boström et al., 2003 ). Thus, non-pharmacological interventions are important as support to medical treatment in patients with cancer-associated pain. Different methods are in use to boost the quality of life of cancer patients and to reduce emotional problems as well as pain and related outcomes ( Evans and Rosner, 2005 ). Benor et al. (1998) , in their study investigating nursing approaches related to self-care in patients undergoing chemotherapy, radiotherapy or both, found a decrease in the severity of pain. The finding of our study indicating that a post-educational decrease in our EG in both pain frequency and severity and in the degree of discomfort was associated with the effect of education included in the scope of education related to non-pharmacological methods to control pain.
In our study chemotherapy patients given education had a decrease in the frequency of psychological symptoms such as distress/anxiety and pessimism/unhappiness, while unusual fatigue was decreased in frequency, severity, and degree of discomfort. On the other hand, the severity and degree of discomfort of the symptom of fatigue and the frequency and severity of the symptom of difficult sleeping were decreased. Giarelli et al. (2000) and Harris (1997) reported that informing patients of their status decreases fear and anxiety and diminishes some of the side effects of cancer therapy. Golant et al. (2003) investigated the effect of an education program on chemotherapy coping skills and found a decrease in depressive symptoms and other problems related to occupational and daily activities due to emotional stress. Williams and Schreier (2005) similarly detected a lesser degree of psychological symptoms such as anxiety, fatigue, and sleep disorder as a result of education in 71 patients. Although many factors – such as culture, personality, and socioeconomic status – are known to affect symptom perception, the beneficial effect of education on symptoms is an anticipated result (Coates et al, 1983 and Evans and Rosner, 2005).
Our study found that education decreases chemotherapy symptoms. However, education did not affect all symptoms uniformly. In our study, post-treatment nausea and vomiting, constipation, pain, signs of infection, problems of mouth and throat, problems of skin and nails, appetite changes, weight loss or weight gain, distressed/anxious feelings, pessimistic and unhappy feelings, unusual fatigue, and difficulty in sleeping were decreased in frequency. Similarly, the severity of post-treatment nausea and vomiting, constipation, dyspnea, pain, appetite change, weakness, unusual fatigue, difficulty in sleeping, headaches, and menstrual disorders (for women) also decreased. On the other hand, the degree of discomfort of post-treatment nausea and vomiting, constipation, pain, weight loss/gain, weakness, excessive fatigue, headaches, and menstrual disorders (for women) also decreased. Although frequency, severity, and degree of discomfort of symptoms were altered depending on the personal features of the patient and the type, dosage, route of administration, duration, and treatment intervals of chemotherapy, this study is important in that it shows that control of some symptoms is possible by a controlled education of patients taking chemotherapy. In line with these results, we feel that systemic assessment of chemotherapy-induced symptoms and continuity in organization of educational activities aimed at symptom control in chemotherapy patients will increase the quality of life by symptom control.
Limitations of the study
As the criteria described in the materials and methods section were used when including individuals into the study, a randomized sampling method was not employed. Although training was provided to the study group prior to each chemotherapy session, symptoms were not evaluated after each chemotherapy session, and the effect of the training on symptom control was evaluated only after the third chemotherapy session. These points were considered as the limitations of the study. By taking these limitations into consideration in future studies, a more comprehensive study design can be used by taking into account the effects of individual differences, of different treatment protocols, and of repeating the trainings regarding the side effects of chemotherapy.
Conflict of interest statement
The authors thank Dr Ziynet Çınar, Department of Biostatistics, Cumhuriyet University, Turkey, for her help in analyzing the data.
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a Cumhuriyet University, Health Sciences Faculty, 58140 Sivas, Turkey
b Erciyes University, Mehmet Kemal Dedeman Oncology Hospital, Hematology–Oncology Unit, Erciyes, Turkey
∗ Corresponding author. Tel.: +90 346 225 23 21; fax: +90 346 225 12 31.
☆ This study was presented in 13th National Congress of Internal Medicine at 6–10 October 2011.
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