Abstract
Objective
To determine the frequency of symptoms and symptom clusters experienced by patients with cancer receiving palliative care services.
Methods
This cross-sectional study included 187 patients with cancer who were hospitalized in the palliative care service between March 10, 2017 and October 30, 2018. The data were collected by the researcher face-to-face using the patient identification form, memorial symptom rating scale, and Karnofsky performance scale. The research data were analyzed using SPSS software.
Results
Cluster analysis identified 2 symptom clusters. The first symptom cluster included physical symptoms and psychogenic symptoms related to cancer diagnosis and treatment, while the second symptom cluster mainly included nutritional (gastrointesinal system related) and genitourinary system-related problems.
Conclusion
Further studies are recommended for effective symptom management according to the type of cancer and for developing detailed symptom clusters.
Introduction
Patients with cancer, who constitute a significant proportion of palliative care patients, may experience many symptoms, such as pain, fatigue, nausea, vomiting, loss of appetite, constipation, anxiety, sleep disturbance, pruritus, and depression caused by the disease itself, the stage of cancer, or cancer treatment(1). In symptom management, when only one symptom is evaluated or focused on, other symptoms may be overlooked, treatment may be incomplete, and the patient’s quality of life may deteriorate(1, 2). At the same time, concurrent symptoms observed in patients with cancer can increase the severity of symptoms by increasing the effects of each other and causing the emergence of new symptoms(3).
Distressing symptoms theory is an intermediate-level theory developed by Lenz et al.(4) in 1995 and revised in 1997. The theory of distressing symptoms is based on the integration of findings from symptom research. The model plays a key role in the creation of symptom clusters in terms of the synchronicity and interrelatedness of symptoms. This theory comprises three dimensions. The first dimension is defined as the factors affecting the symptoms (physical, psychological and situational), the second dimension is defined as the duration, intensity, quality, and distress of the symptoms, and the third dimension is considered the effect of these symptoms on the achievements of individuals, including cognitive and functional activities caused by these symptoms(5).
The coexistence of three or more symptoms in patients with cancer was initially defined as a “symptom cluster”, but today it is defined as the coexistence of two or more symptoms that are interrelated and continuously present in the patient continuously(6). Although there is not yet a complete consensus on the definition of symptom clusters, symptom clusters have been created based on both definitions in studies(7). It is necessary to increase evidence-based knowledge in the clinical management of symptom research, and more data on the symptoms experienced by patients with cancer are needed to generate evidence in this field. Symptom clustering is a concept that started to be used in the nursing literature about 15 years ago, and there are not enough studies in this field. It is emphasized that by identifying symptom clusters, nurses will be better able to define symptoms more accurately and target interventions that will facilitate symptom management. Effective symptom identification is reflected in patient care and quality of life of patients undergoing effective symptom management(8).
The aim of this study was to help caregivers improve the quality of care by reducing the symptom burden of patients with cancer, to determine patient care needs, and to assess the frequency of physical and psychological symptoms related to cancer diagnosis and treatment.
Materials and Methods
The type of study is cross-sectional. The study sample consisted of 187 patients with cancer who were hospitalized in the palliative care service of a hospital between March 10, 2017, and October 30, 2018, and who agreed to participate in the study.
Statistical Analysis
The data were entered into the statistical software program SPSS 25.0 (SPSS Inc., Chicago, IL, USA) and analyzed. The findings are presented as numbers, percentages, means, and standard deviations. The Kruskal-Wallis test was used to evaluate the significance of the difference between the means of the groups, and correlation analysis was used to compare the relationship between the groups. Cluster and factor analysis were used to determine the clusters. Statistical significance level p<0.05 was accepted. The patient introduction form, Karnovsky performance scale, and memorial symptom rating scale (MSRS) will be used as data collection tools in the study.
I. Patient identification form: This form consists of 10 questions regarding socio-demographic characteristics, such as age, gender, education and income status, and the duration of the individual’s hospitalization in the clinic and current status(9).
II. Memorial symptom rating scale: The MSRS is a comprehensive multidimensional cancer-related symptom assessment tool. The material safety data sheet (MSDS) format developed by Portenoy not only reveals the prevalence of symptoms but also the frequency and distress analysis of 32 physical and psychological symptoms. In the scale, 24 symptoms were evaluated in terms of frequency, severity and distress; 8 symptoms are evaluated in terms of frequency and distress. The scale consists of the global distress index (GDI), physical symptom subscale score (MSDS-Physical), and psychological symptom subscale score (MSDS-Psychological). This validated multidimensional scale measures the prevalence, characteristics, and distress of common symptoms in serious illnesses. The Total MSDS 41 (TMSDS) score is the mean symptom score of the 32 symptoms in the MSDS scale(10) Turkish reliability analysis of the scale was conducted by Yildirim et al.(11). In the validity and reliability analysis conducted by Yildirim et al.(11), the item total score correlation was 0.03-0.64. The Cronbach’s alpha values of the total MSDI and MSDI sub-dimensions were between 0.71 and 0.84.
III. The Karnofsky performance scale (KPS): Is a scale developed for patients with cancer and was introduced into the literature by Karnofsky et al.(12) in 1948. The Karnofsky performance scale was evaluated numerically on a scale of 0-100 with a 10-point incremental number. The scale provides information about the patient’s functional capacity, such as the ability to perform normal activities and work, the need for caregivers, and the level of dependency on medical care.
Patients who agreed to participate were informed about the study and provided written informed consent. Participants were also informed that they could withdraw from the study at any time. Ethical approval for the current study was obtained from the Scientific Research Ethics Committee of University of Health Sciences Turkey, İzmir Tepecik Education and Research Hospital (approval number: 2018/8-9, date: 11.07.2018).
Results
A total of 187 patients receiving palliative care participated in the study. Of the study group, 73.3% (n=137) were male, and the mean age was 63.7±12.124 (min: 19; max: 109). 71.1% of the patients were not married and 51.3% (n=96) were not actively working. The percentage of those with high school education and above was 25.7% (n=48). It was found that 54% (n=101) of the patients had normal body weight and 76.5% (n=143) were anemic. It was learned that 61% (n=114) of the patients were diagnosed with lung cancer, 62% received the diagnosis 1 month ago, and 43.3% (n=81) had metastasis. The mean duration of hospitalization was 22.9±21.390 min: 1; max: 210) days, and the mean serum vitamin B12 level was 313.8±89.126 min: 129; max: 834) mg/dL. The socio-demographic characteristics of the study group are presented in Table 1.
The 3 most common symptoms according to the MSDS were fatigue [88.8% (n=166)], pain [81.3% (n=152)], feeling sad, and worrying [71.7% (n=134)], respectively. The frequency of symptoms according to MSDI is presented in Table 2.
As a result of the clustering analysis, 2 symptom clusters emerged in the palliative care patient sample. In the first symptom cluster, physical symptoms related to cancer diagnosis and treatment (shortness of breath, numbness and tingling in the hands and feet, changes in the skin, feeling irritable), pain, weakness/loss of energy, feeling sad, and worrying, which are included in the main cluster as a sub-cluster, are concentrated. The second cluster of symptoms is often characterized by gastrointestinal problems. These symptoms include changes in the taste of food, nausea, vomiting, bloating, itching, difficulty swallowing, and difficulty urinating. The second set of symptoms also includes psychosocial symptoms. The leading symptoms were self-dissatisfaction, sexual desire, and activity. The Dendogram obtained from the clustering analysis according to the frequency of symptoms is shown in Graph 1.
In the comparison of the symptom clusters and socio-demographic data, males experienced more symptom clusters; single, anemic patients, patients diagnosed with lung cancer, patients diagnosed within one month, and patients without metastasis experienced more symptom clusters (Table 3).
In this study, a significant difference was found between the two symptom clusters of MSDS total score, physical and psychological subgroups, and scale global distress index (p<0.001). In addition, although a significant difference was identified between symptom clusters in terms of KPS scores (p=0.007), no significant relationship was found between length of hospitalization and B12 levels (Table 4).
Discussion
This study was conducted to determine the frequency of symptoms and symptom clusters experienced by patients with cancer receiving palliative care services. Two main symptom clusters were identified in this study. In the first symptom cluster, physical symptoms related to cancer diagnosis and treatment (dyspnea, numbness/tingling in hands and feet, skin changes, difficulty sleeping, pain, weakness-loss of energy, worrying and feeling irritable) were observed. The second set of symptoms consisted mainly of symptoms related to the gastrointesinal system, such as changes in the taste of food, difficulty swallowing, nausea, bloating, vomiting, itching, unpleasant feeling, difficulty urinating, and other symptoms. It has been reported that patients with cancer experience an average of 11-13 symptoms simultaneously(13, 14). Our study is consistent with the findings. As a result of our study, fatigue loss of energy was the most common symptom was fatigue-loss of energy (88.8%), followed by pain (81.3%). In the study conducted by Süren et al.(9), the most common symptom was fatigue (98.2%), and similar results were observed in many studies(8, 15, 16). Symptoms such as fatigue and malaise, the sub-pathologies of which are not well known and often overlooked, negatively affect the quality of life, participation in life, and emotional state of patients during the day, and increase exposure to conditions that complicate the disease process, such as physical immobility(17,18).
Gastrointestinal symptoms such as nausea, vomiting, and anorexia are some of the symptoms that form a cluster due to conditions such as palliative care patients being in the terminal period and treatment side effects(19, 20). In addition to the negative effects of gastrointestinal symptoms on nutrition, it may lead to a poor response to the treatments applied due to the inability to meet the energy requirement(21). In the management of gastrointestinal symptoms observed in patients, it is useful for nurses to know the importance of early planning of interventions that will prevent or stop the increase in severity starting from the emergence of the symptom in terms of symptom burden(22, 23). In patients with cancer, one symptom may trigger other symptoms, or symptoms may occur independently of each other through different mechanisms. Our symptom clusters include psychological and physical symptoms. This situation, which is also encountered in the literature as one of the conditions that make symptom management difficult, can cause difficulties in understanding symptom management and its etiology because of the mechanism of symptom occurrence, the multidimensionality of human beings as a being, and the fact that symptoms sometimes manifest themselves by causing a metabolic or endocrine disorder without causing a physical symptom finding(13). In our study, males experienced symptom clusters more frequently. In some studies, it has been reported that women experience more symptom burden(13), but there are also research findings with no difference between gender(24).
In our study, the group with the most frequent symptom cluster was newly diagnosed patients. Here, as health professionals, it is important to recognize that patients are at higher risk than other groups because of the negative effects of cancer treatments, the hospital process, and the weakening of social relations(8). Early initiation of effective symptom management, holistic treatment of the patient, and multidimensional follow-up of the patient by the primary care nurse and physician will reduce the risk.
Study Limitations
The fact that the research was conducted in a single center is one of the limitations of the study.
Conclusion
Palliative care patients are at high risk of experiencing more than one complex and unmanageable situation from diagnosis to bereavement. Patients’ reactions to the diagnostic process, coping with rapid and severe bed-related effects, especially at the end of chemotherapy treatment, withdrawal from social life, and role changes increase the symptom burden and make symptom management difficult. It is recommended that health professionals, especially those working in the field of palliative care, recognize symptoms, understand the complex process caused by symptom coexistence, plan symptom-specific management to prevent the formation of symptom clusters, and carry the knowledge to the field by sharing the results of research with health professionals in clinical practice.
