Education of cancer patients - a psychosocial support in the holistic anticancer treatment

Transcription

1 Journal of BUON 11: , Zerbinis Medical Publications. Printed in Greece ORIGINAL ARTICLE Education of cancer patients - a psychosocial support in the holistic anticancer treatment A. Djurdjević 1, S. Nikolić 2 1 Institute for Oncology and Radiology of Serbia, Department of Education, Beograd; 2 Faculty of Defectology, University of Beograd, Beograd, Serbia & Montenegro Summary Purpose: To assess the readiness for education and the learning needs of cancer patients, and to assess the correlation between the information and different aspects of quality of life (QoL). Patients and methods: 70 cancer patients were enrolled. All of them answered a questionnaire specifi cally designed to assess the readiness and needs for education, and the level of the information among them. The Rotterdam Symptom Checklist (RSCL) was used for QoL estimation. Results: 28 (40%) out of 70 patients had high motivation for education, while 62 (88%) expressed positive attitudes toward learning. Sixty-three (90%) patients needed to know more about nutrition. The topics about alternative and complementary cancer treatments interested 59 (84%) patients. Forty-two (60%) patients wanted to learn about changing of the life habits and about their own active participation in the process of adaptation to their new situation due to cancer. There was signifi cant (r= 0.33, p <0.005) correlation between the information and global QoL, and borderline significance between the information and physical aspects of QoL (r= 0.233, p= 0.052). Conclusion: We showed that better understanding, knowledge, and skills in the rearrangement of treatment goals and making changes in plans for future might have great impact on QoL. Education of cancer patients in this direction has to be systematic and planned according to the patient s wishes and learning needs. Only in this way education could be a powerful means in coping for better QoL and a psychosocial support in the holistic treatment of cancer patients. Key words: cancer patients, patient education, quality of life, supportive care Introduction Cancer has always been a synonym for suffering and death [1]. The essence of a cancer patient s specific education is providing information and knowledge about cancer and anticancer treatments, and giving psychosocial support as well [2,3]. Received ; Accepted Author and address for correspondence: Ana Djurdjević, MSc Department of Education Institute for Oncology and Radiology of Serbia Pasterova Beograd Serbia & Montenegro Fax: duki936@eunet.yu The aim of cancer patient s education is to demystify facts about cancer as a threatening disease, to explain the risk factors and possibilities of contemporary treatment and to improve QoL, thus eliminating bias and misconceptions about cancer as incurable disease [4-6]. Patients should realize that cancer is a chronic illness, which can be cured, or controlled with specific anticancer treatments, rehabilitation and palliative care. This education may reduce emotional tension, fear, confusion and uncertainty, making the patients familiar with expected feelings, and by coping strategies [7-9]. Patients are expected to learn how to compensate and substitute disability and functional limitations [5,10,11]. These patients are motivated for looking for new meanings and to make a new sense of life. They are supposed to accept the new social roles, to create new

2 218 life goals, new plans for the future, to accomplish social integration, and to achieve the best possible QoL [12-14]. The goals of our investigation were to assess the readiness and the learning needs of cancer patients for such an education, and to assess the correlation between the information and different aspects of QoL. Patients and methods Patients The investigation was conducted at the Institute for Oncology and Radiology of Serbia, in Beograd, during the year Seventy cancer patients were enrolled. Eligibility criteria included confirmed diagnosis of cancer and the patient s signed informed consent about participation in the study. The patient characteristics are shown in Table 1. Methods The specifically designed questionnaire Information about disease and treatment (Table 2) was used in order to assess the level of information about facts on disease, treatment and behavior in the new situation that cancer patients faced. The specifically designed questionnaire Assessment of readiness and learning needs (Tables 3, 4) was used for assessing the psychophysical readiness, communication skills, motivation for learning, and needs for kind and extent of information and specific knowledge. The RSCL was used in order to measure different aspects of QoL. Statistics Statistical analysis was carried out using the Spearman s rank correlation test for relationship between the level of information and different aspects of QoL. Table 1. Patient characteristics Characteristic No. (%) No of patients 70 (100) Gender male 16 (23) female 54 (77) Age (years) median 49 range Educational level low 4 (5.7) middle 29 (41.4) high 37(52.9) Tumor site breast cancer 20 (28.57) hematologic malignancies 10 (14.28) bone and soft tissue sarcomas 9 (12.85) gynecologic malignancies 9 (12.85) other localizations 9 (12.85) upper airways and digestive tract 8 (11.42) lung carcinomas 5 (7.14) Disease extent localized 21 (30) metastatic 49 (70) Actual treatment surgery 3 (4.28) chemotherapy 45 (64.28) radiotherapy 1 (1.47) combined therapy 17 (24.28) treatment-free patients 4 (5.7) Table 2. Information about disease and treatment Question Answer 1. Do you know what your diagnosis is? Yes No 2. Is cancer characterized by uncontrolled Yes No growing cells? 3. Is cancer a contagious disease? Yes No 4. Is the origin of cancer known? Yes No 5. Does metastasis occur by spreading of Yes No tumor cells to distant organs? 6. Can chemotherapy cure cancer? Yes No 7. Can chemotherapy control tumor growth? Yes No 8. Is application of radiotherapy painful? Yes No 9. Is cancer a chronic disease? Yes No 10. Is it necessary for cancer patients to be on Yes No specific diet? 11. Is it possible to cure cancer with alternative Yes No approaches? 12. Is shock the first phase of the crisis situation Yes No due to cancer? 13. Is visualization a strategy for relaxing Yes No thoughts and feelings? 14. Are cancer patients capable of performing Yes No professional activities? 15. Are physical exercises allowed to cancer Yes No patients? 16. Is sunbathing allowed to cancer patients? Yes No 17. Are experiences with side-effects of cancer treatment the same in all patients? Yes No

3 219 Table 3. Assessment of readiness for education Question 1. How many information do you have about disease and treatment? a) no information b) a few information c) enough information 2. Your resources of information were: a) a doctor b) a nurse c) others 3. Your motivation for learning is: a) high b) good c) insufficient 4. Verbal communication is: a) good b) difficult 5. Status of senses: a) without problem ( normal) b) problem with 6. Physical ability: a) normal b) limited 7. Your attitude toward learning is: a) positive b) indefinite c) negative 8. Possibilities for including in work group: a) yes b) no Results Four out of 70 (5.7%) patients reported no previous information, 32 (45.7%) had a few information, and 34 (48.5%) declared that they had enough previous information about disease and treatment. Table 4. Assessment of learning needs Question: Would you like to know more about? Answer 1. Human body and illness Yes No 2. Diagnostic procedures and cure Yes No 3. Nutrition and diet Yes No 4. Side effects of anticancer treatment Yes No 5. Behavior in bacteria-free environment Yes No 6. Psychological reactions and coping strategies Yes No 7. Family role and relationships Yes No 8. Sexual life and partnership Yes No 9. Changes in life habits and active adaptation Yes No 10. Supportive resources in society Yes No 11. Alternative approaches in anticancer treatment Yes No 12. Clinical trials Yes No Fifty-nine (84%) patients knew that cancer is not an infectious disease, 58 (83%) in which ways cancer spreads in the human body, 57 (81%) were informed about side effects of anticancer treatments. Fifty-four (77%) patients answered correctly how chemotherapy works in the human body and about possible outcome, and 52 (74%) knew that physical activities are very useful for maintain good condition. Only 3 (4.2%) patients had knowledge about correct life habits. About adequate nutrition 33 (47%) patients were well-informed, while 23 (33%) expressed bias about alternative approaches in cancer therapies. Knowledge about appropriate coping strategies for living with cancer had 34 (48.5%) patients, and 38 (54%) knew about psychological reactions to the new situation due to cancer. Twenty-eight (40%) patients had high and 35 (50%) had good motivation, while 7 (10%) patients expressed insufficient motivation for education. No patient had negative attitude toward learning, 62 (88.6%) patients expressed positive attitude, and 8 (11.4%) had an indefinite attitude toward learning. Sixty-three (90%) patients needed to know more about nutrition and diets, 56 (80%) about side-effects of therapy, 55 (78%) about diagnostic procedures and contemporary treatments, 51 (72.8%) about clinical trials, 48 (68.5%) about human body and illness, and 43 (61.4%) wanted to know more about the infection prevention and behavior in bacteria-free environment. The topics about alternative and complementary cancer treatments were interesting for 59 (84%) patients. Fifty-three (75%) patients required more knowledge about psychological reactions to the new situation due to cancer, and about coping strategies. Forty-eight (68%) patients were interested in the family members new roles and inter-family relationships in such situations, while 45 (64%) patients were interested in supportive resources in society. Forty-two (60%) patients wanted to learn about changing of the life habits and about their own active participation in the process of adaptation in the new situation created by cancer. The topics about sexual life and partnership were interesting for 38 (54%) patients. Global QoL was assessed as excellent by 11 (15.5%) patients, good by 22 (31%), moderately good by 15 (22%), neither good nor bad by 19 (27%), and poor by 3 (4.5%) patients. No patient marked rather poor and extremely poor global QoL. There was significant correlation (r= 0.33, p < 0.005) between information and global QoL (Figure 1).

4 220 Figure 1. Spearman s rank correlation. Correlation between the level of information and global QoL (ko = score of global QoL according to the Rotterdam Symptom Checklist; io = number of correct answers on the questionnaire in Table 2). Physical symptoms, which bothered most patients, are shown in Table 5. There was borderline significance (r= 0.233, p=0.052) between information and physical aspects of QoL (Figure 2). Psychological symptoms are shown in Table 6. There was a tendency toward borderline significance (r= 0.215, p=0.074) between the level of information and psychological aspects of QoL. Table 6. Intensity of psychological symptoms according to the Rotterdam Symptom Checklist (n=70) Intensity I II, III and IV Symptom No. of patients % No. of patients % 1. Irritability Worrying Depressed mood Nervousness Despair about the future Tension Anxiety I: not at all; II: a little; III: quite a bit; IV: very much Sixty-one (87.14%) patients were able to care for themselves without help, 66 (94.28%) to walk indoor, 59 (84.28%) to perform light housework, 60 (85.71%) were able to climb stairs, 30 (42.85%) to perform hard housework, 57 (81.42%) were capable to walk outside, and 55 patients (78.57%) could do shopping. There was no significant correlation (r = 0.137, p > 0.05) correlation between the level of information and functional abilities. Table 5. Intensity of physical symptoms according to the Rotterdam Symptom Checklist (n=70) Intensity I II, III and IV Symptom No. of patients % No. of patients % 1. Lack of appetite Tiredness Lack of energy Decreased sexual interest Dry mouth I: not at all; II: a little; III: quite a bit; IV: very much Figure 2. Spearman s rank correlation. Correlation between the level of information and physical aspects of QoL (fo = score of physical aspects of QoL according to the Rotterdam Symptom Checklist; io = number of correct answers on the questionnaire in Table 2). Discussion The participants in our study were well informed about the biomedical aspects of cancer and this provides positive impact of specific knowledge on physical aspects of QoL. The participants expressed the least information about the correct behavior in their daily activities in the new situation and health life habits. This lack of knowledge could be an important risk, leading to inadequate manage in cure, care and can minimize the therapeutic effects. This led us to force motivation in cancer patients for active involvement in self-care, to change unhealthy and inappropriate life habits, and to adjust new frames in their behavior. The motivation for learning is the base for successful education. We saw a high degree of readiness in our patients for active participation in their treatment. Positive attitude toward learning allows to cope with misunderstandings and biases about cancer and anticancer treatment. The subjective perception of someone s own di sease could make a more important impact than the real condition on the course of cure, care and the rehabilitation process, and could interfere with the treatment outcome. This is closely related with someone s personal sense and perception of cancer. Due to this attitude, the intention of education is to help patients

5 221 live with their perception of cancer rather than to live with cancer. We showed that specifically educated patients were able to reduce unpleasant symptoms of disease and therapy, to prevent a handicapped situation, and to achieve the best possible QoL [9]. Global QoL significantly correlated with the level of information, and was connected not only with health, but also with the cultural background, economic status, social relationships, and the system of values in the society in which the patient lives. Besides, global QoL depends on experience with cancer and satisfaction with life, but also on patient s education about cancer and treatment [5,7]. The tendency to borderline significance between the level of information and psychological aspects of QoL proves that, with the patient s education, emotions could be controlled and conducted, and be positively directed to achieving and establishing real goals and plans for the patient s future. During the adaptation period the patients are encouraged to accept cancer emotionally as a chronic disease, to harmonize their relationship with society requirements, and to accept reality [1]. An informed patient is aware of all limitations imposed by cancer, and of the new creative possibilities too; he/she also achieves self-confidence and can carry out usual activities, not denying the presence of disease, but overcoming the problems connected with it. Giving information to a patient in combination with psycho-emotional support can relieve confusion and anxiety, and improve self-respect [2,15,16]. A study on the impact of education in patients with breast cancer proved that education enhanced the grade of self-respect and self-confidence, established better open communication, and diminished anxiety and depression [1,17]. By active learning about cancer, its treatments and coping strategies for life with malignant disease, the patients acquire efficient tools in overcoming fear and uncertainty associated with cancer and its treatments, and achieve the best possible QoL. The content of an educational programme should be created from the patients perspective, based of their previous knowledge of cancer and anticancer treatments, on their actual learning needs, wishes, requirements and interests in different topics [2,15,16]. The intention of cancer patients education is to establish a partnership among a multiprofessional team and patients, which contributes to mutual benefit. Better understanding of cancer and its treatments may result in better therapeutic outcomes and better QoL for the patient and his/her family, something that can cause professional satisfaction of the staff involved. Acknowledgement I wish to thank Dr. Ljiljana Vučković- Dekić and Dr. Svetislav Jelić for careful reading of the manuscript and for giving useful suggestions. References 1. Sabol R. Cancer patients rehabilitation. In: Turic M, Kolaric K, Eljuga D (eds): Klinička onkologija. Nakladni zavod Globus, Zagreb, 1996, pp (in Croatian). 2. Grahn G. Learning to cope - an intervention in cancer care. Support Care Cancer 1993; 1: Morita T, Akechi T. Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol 2004; 15: Djurdjević A, Djordjević A, Berat S, Jelić S, Klikovac T. Communication with cancer patients. Arch Oncol 2002; 10: Djurdjević A. Possibilities for somatopedologic intervention in rehabilitation of cancer patients. Ms thesis. Faculty of Defectology, University of Belgrade, 2002 (in Serbian). 6. Dalton SO, Boesen EH, Rosss L, Shapiro IR, Jahansen C. Mind and cancer: do psychological factors cause cancer? Eur J Cancer 2002; 38: Djurdjević A, Nikolić S. Impact of education on quality of life of cancer patients during rehabilitation. Ann Oncol 2003; 14 (Suppl 3): Holland JC. Lesson in psycho-oncology. J BUON 2002; 7: Ward S, Hughes S, Donovan H et al. Patient education in pain control. Support Care Cancer 2001; 9: Hensel M, Egerer G, Schneeweiss A, Goldshmidt H, Ho AD. Quality of life and rehabilitation in social and professional life after autologous stem cell transplantation. Ann Oncol 2002; 13: Cole PR, Scialla SJ. Does rehabilitation have a place in oncology management? Ann Oncol 2002; 13: Ross L, Boesen EH, Dalton SO, Johansen C. Mind and cancer: does psychosocial intervention improve survival and psychological well-being? Eur J Cancer 2002; 38: Djurdjević A, Nikolić S. Influence of education on psychosocial adaptation of cancer patients. Ann Oncol 2005; 16 (Suppl 2): 319 (abstr). 14. Cole PR, Scialla SJ, Bednarz L. Functional recovery in cancer rehabilitation. Arch Phys Med Rehabil 2000; 81: Grahn G. Coping with the cancer experience. I. Developing an education and support programme for cancer patients and their significant others. Eur J Cancer Care 1996; 5: Grahn G, Danielson M. Coping with cancer experience. II. Evaluating an education and support programme for cancer patients and their significant others. Eur J Cancer Care 1996; 5: Milović Lj. Implementation of the educational programme Learning to live with cancer in psychosocial adaptation of breast cancer patients. PhD thesis, Faculty of Medicine, University of Belgrade, 1999 (in Serbian).