Demoralization level fluctuated at various time frame of radiotherapy for patients with different cancers: a longitudinal observational study

Demoralization syndrome is a common clinical presentation in patients at the end of life [1, 2]. The core concept of demoralization is the loss of purpose and meaning in a patient’s life [3]. Aside from the philosophy of existentialism, the traditional psychological theory of drive implies that people instinctively strive to live their lives, particularly in the critical moment between life and death [4]. However, demoralized patients who have lost the sense of meaningfulness of life present symptoms such as hopelessness and helplessness due to the enormous and persistent existential distress they face [1]. In 2001, Kissane et al. [5] investigated cancer patients receiving palliative care and reported that the demoralization syndrome has specific symptoms that could be identified clinically. Another study provided further evidence, emphasizing the importance of the concept of demoralization, particularly in the field of palliative care [6]. Moreover, in 2004, they proposed the demoralization scale (DS), which is a reliable and validated measure of demoralization [7]. Since its publication, the DS has been validated by several studies [8, 9] and has been used in studies investigating demoralization, facilitating the identification of patients with demoralization syndrome [10]. Moreover, the DS has also been used as a diagnostic tool, particularly for differentiating between demoralization and depression [11].

Therapeutic complexity increases the psychologic burden of patients with cancer, leading patients to experience feelings such as anxiety, depression, anxiety of death, demoralization and ineffective coping, and whether or not the patients accept the disease and feelings and continue to live their lives may affect the patients’ prognosis, quality of life, and even suicide and death rates [12]. Demoralization is different from depressive disorder in terms of clinical impact. It is suggested that depressive patients tend to perceive that the source of distress is internal to them and often lack motivation, while in contrast, demoralized patients perceive that the source of distress is external to them and frequently present with uncertainty about the direction their actions should follow, implying that their motivation is intact [1]. Multiple studies have shown that demoralization is more associated with psychological state rather than the physical condition [12,13,14]. Furthermore, for clinicians or medical staff devoted to caring for patients with cancer, patients under hospice care, or patients with chronic psychosis, the most important concern is not only to differentiate demoralized patients from depressive ones, but also to provide appropriate and efficient treatment strategies for patients with a high demoralization level [1]. Numerous studies have demonstrated that, for patients with depression, biological interventions such as antidepressant use are helpful, and for demoralized patients without depression, psychotherapy or other psychosocial approaches are the most effective intervention choices [1, 15, 16].

Notably, demoralization may be affected by national characteristics, culture, disease characteristics and general conditions of the patient such as individual cultural features, nature of stress, personal expression preferences and social behavior [17]. Compared with the results of previous studies on the prevalence of highly demoralized patients with cancer in other countries, patients with cancer in Taiwan exhibited a higher prevalence of demoralization syndrome [9, 10, 18]. According to our review of the relevant literature, studies on demoralization among patients with cancer in Taiwan [10] may not be easily generalized due to several limitations, such as a cross-sectional design, lack of information on the subtypes of cancer and cancer stages, and different time points in cancer treatment processes. Therefore, in the current study, we used a longitudinal design and considered many possible associated factors. We aimed to investigate the prevalence of high demoralization and the changes in the level of demoralization in cancer patients during radiotherapy (RT) to explore the associated factors and the contributing factors to the high level of demoralization.

Conceptual framework

Demoralization syndrome has become increasingly recognized as a challenge to providing patients with grave diseases with appropriate care as they typically lose hope and self-esteem and feel helpless and incompetent [5, 17, 19]. It’s been estimated that as many as almost 29% of patients with cancer present signs of demoralization, and understanding the syndrome is critical to providing appropriate and effective care to patients with it [10]. Current cancer treatments primarily involve the use of surgery, chemotherapy, and RT [20]. More than half of all cancer patients who are treated for cancer require RT, and the side effects of RT depend on the radiated site [20]. During the RT stage of cancer treatment, patients may experience impaired immune system functions, the occurrence of comorbidity, and the side effects of cancer treatment. Because of the side effects of RT generally occur from the time RT is started until 3 months after completion of the RT [9, 10], the body composition changes of patients with cancer were measured at six time points during this period – from the time they received RT to 3 months after completion of RT. We formulated this study to investigate the development of demoralization among patients with various cancers at various time points of RT. By exploring change in the demoralization level of patients and analyzing potential factors associated with the change, we hope to provide constructive suggestions to offering appropriate care to patients with cancer at risk of demoralization.

Methods

This was a longitudinal study with a total of 121 patients recruited between January 1, 2014 and December 31, 2014. We arranged an interview with the participants to assist them in completing the Demoralization Scale-Mandarin Version (DS-MV) [8], which is a self-report questionnaire for defining high demoralization and evaluating the changes in the demoralization level at six different time points in around 6 months. Participants were arranged for an interview to help the participants receive the body composition measure at six-time points, including before starting RT, the second and fourth weeks after the first interview, the end of RT and the first and third months after RT was completed. In addition, other demographic data and the information on the participant’s physical conditions were considered, particularly those related to cancer therapy, including affected regions of cancer, cancer stages, and treatment strategies for cancer.

The inclusion criteria in our study were as follows: (1) Patients who were diagnosed with malignancy for the first time and had no previous cancer history; (2) patients who were indicated to receive RT; (3) age more than 18 years; (4) no cognitive deficit or ability to communicate with researchers; and (5) RT performed at the outpatient setting. Non-inclusion criteria were as follows: (1) RT treatment goal as providing palliative care; (2) patients with relapsed cancer; and (3) patients who were determined to be unsuitable for participation by the attending physicians because of poor physical conditions.

During the observation period, four participants interrupted their RT treatment courses, nine participants stated that they were not willing to continue, three participants died, and the data collected from four participants were removed because of the erroneous information. The missing data rate in the study was 16.52%. Finally, 101 participants completed the study for all six time points. Subsequently, we classified the 101 participants into three groups based on the affected regions of cancer: (1) head and neck; (2) chest and breast; and (3) abdominal and pelvic groups.

The measurement of the demoralization level was based on the total scores of the DS-MV, which was translated into Mandarin in 2008 with a certificate. Based on the guidelines of Kissane et al. [5], high demoralization was defined as a DS-MV score of more than 30. The Cronbach’s alpha for individual items ranged from 0.63 to 0.88, which indicated that the DS-MV is a valid and reliable questionnaire for Taiwanese patients with cancer. In addition, in 2010, Hung et al. [8] proved that the Cronbach’s alpha value of the internal consistency of the scale was 0.92.

Ethics statement

This study was approved by the Institutional Review Board of Kaohsiung Veterans General Hospital (VGHKS13-CT11-05). We recruited volunteers by placing posters outside the radiation oncology clinics and in the radiation oncology wards. The protocol contents were explained clearly to every patient by the principal investigator, and all patients were informed that if they were not willing to continue the study, they could withdraw from the study anytime. Informed consent was obtained from all individual participants recruited in the study. All methods were performed in accordance with the relevant guidelines and regulations (Declaration of Helsinki).

Statistical analysis

In the study, sample size calculation was done using the G power 3.1.9.2 program, repeated measures was employed and the following settings were applied: type I error, α = 0.05; test power, (1-β) power = 0.8; two-tailed test; 95% confidence interval; recommended medium effect size = 0.25; six repetitions, and number of group = 1. The calculations showed that at least 19 patients were required for each cancer site. Strauss et al. estimated the patient loss rate on RT to be 13% [21]. This indicated that the minimum number of patients required for this study was 66. This study used a univariate generalized estimating equation (GEE) analysis, which was performed to explore the association between the changes in the demoralization level at different time points among patients with cancer in each group. Also, both the demographically descriptive statistics such as percentage, mean, standard error, and the analytical statistics including generalized estimation equation in the current study were registered and analyzed with SPSS statistical software for Windows, Version 20 (IBM, Armonk, NY, USA). Statistical significance was considered when p < 0.05.

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