Psychological distress and problem list among patients with advanced cancer: A comparative study of Indonesia and Taiwan

We assumed that patients in a country with lower economic development will have more psychological distress and problems than an economically stronger country. Therefore, the aims of this study were to determine whether advanced cancer patients in Indonesia have more psychological distress and experience more problems contributing to distress than a similar group of patients in Taiwan. We also examined the determinants of psychological distress. Methods We conducted a secondary data analysis comparing the data from 286 Indonesian and 70 Taiwanese participants, focusing on distress score and the Problem List (PL) of the Distress Thermometer. Descriptive analysis, Chi-Square test, independent t-test, One-way Anova and multiple linear regression with enter method were applied to analyse the data.


Introduction
Cancer is the leading cause of death in both developed and developing countries 1 . However, the type of cancer diagnosed and the leading cause of cancer death vary across countries and depend on economic level, social development and people's lifestyles 2 . For example, in low-middle income countries many patients have limited access to appropriate diagnosis and treatment while in countries with stronger healthcare systems, greater access to early detection and high-quality treatment are improving survival rates 3 . These differences have created a gap in survival rates between countries.
Indonesia has had an upward trend in cancer incidence in the past decades. Cancer ranks among the ten most common causes of death and nearly 70% of cancer cases are diagnosed at an advanced stage. In addition, many unmet needs have been found among cancer patients and their family 4

. A report from The
Economist Intelligence Unit (2015) 5 showed that Indonesia ranked 53 of 87 countries in the quality of death index indicating that Indonesia scores poorly in providing cancer care. Although current o cial data is lacking, due to these conditions, advanced cancer patients (ACPs) in Indonesia are at higher risk of experiencing psychological distress. In comparison, Taiwan is a high-income country, where cancer is also a leading cause of death 6 . Despite a high incidence rate, the mortality rate is decreasing due to continual improvement in care 7 . Therefore, it is not surprising that Taiwan ranks 4th of 87 countries in the quality of death index 5 .
Since 2012, there has been an increase in advanced stage cancer diagnoses and advanced stage deaths 8 . Given the increase in cancer survivors, psychological wellbeing has become an important outcome of cancer care quality 9 . A common problem among ACPs is psychological distress. Distress can result from emotional and social changes brought on by cancer diagnosis, and effects of disease including physical burden and its treatment 10 . Unmanaged distress may result in numerous negative outcomes such as non-adherence to treatment, longer hospital stays, poorer quality of life (QOL) and lower survival rates 11,12 . Therefore, identi cation and early treatment of distress are essential.
Identi cation of distress among ACPs, however, is still quite challenging which means distress goes underrecognized and, thus, undertreated 13 . Furthermore, many health systems in low-and middle-income countries are not well prepared for identifying and treating distress 3 . The National Cancer Comprehensive Network (NCCN) 14 Distress Thermometer (DT) may be an ideal tool to address this. It has also been translated with acceptable psychometric properties into several common languages, spoken in both developed countries, such using Mandarin (Taiwan), and developing countries, such as Bahasa (Indonesia) 15,16 .
Limited research has studied distress in Taiwan and Indonesia, and in particular distress among ACPs has not been studied. Furthermore, comparative analyses that explore the differences in distress and problems that contribute to this distress between these two countries do not exist. The aim of this study was, therefore, to determine whether ACPs in Indonesia have more psychological distress and experience more problems associated with distress than a similar group of patients in Taiwan. Additionally, we examined the determinants of psychological distress including socio demographics and problems contributing to distress as indicated on the DT-Problem List. We assumed that patients with advanced cancer in Indonesia, a country with lower economic status, lower quality death index, limited access to healthcare professionals (HCPs) and the tendency for people not to seek medical assistance even in advanced stages, would experience more psychological distress than patients in Taiwan, a country with higher income and better medical resources.

Design
A secondary data analysis research design was used, which merged data from two studies conducted in Indonesia 17 and Taiwan. In Indonesia a cross sectional research design was implemented which aimed to explore the mediator of coping among patients with advanced cancer 17 . The study conducted in Taiwan used a randomized control trial research design to explore the effectiveness of navigator for a group of patients with cancer.

Participants
Inclusion and exclusion criteria for participants in the two countries were identical. The inclusion criteria were: (1) diagnosed with advanced cancer (stage 3 or 4 as checked in medical record by researcher), regardless of the type of cancer; (2) at least 18-years-old; (3) the ability to speak their national language. The exclusion criteria consisted of: (1) having a severe medical condition; (2) having a major psychiatric disorder as comorbidity; (3) being too ill to ll out the study questionnaires. Based on these criteria, we selected 286 out of 440 participants from the Indonesian sample and 78 out of 191 participants from the Taiwan sample.

Data collection
Data collection procedures in Indonesia are described in Huda et al. (2021) 17 . The study in Taiwan was conducted in a cancer center of a teaching hospital. Trained oncological nurses recruited eligible patients from outpatient departments. Part of the pre-test study variables were selected for this study. The two studies collected the same study variable of the DT and similar demographic and clinic characteristics. The two data sets were then analyzed by the rst author who selected the cases that met the inclusion criteria.

Instruments Background information form
The participants' demographic and clinical characteristics were obtained using sociodemographic and clinical characteristic questionnaires. The demographic data consisted of personal information: age, gender, ethnicity, religion, marital status, educational level, occupation and income level. The clinical characteristics include the type and stage of disease, time since diagnosis and current treatment.

Distress thermometer
Distress thermometer is a single item, self-report questionnaire developed by NCCN that measures psychological distress 14 . Patients rated their distress in the past week on an 11-point visual analog scale. Its scores range from 0 (no distress) to 10 (extreme distress). A cut off score ≥ 4 has been accepted by NCCN as an indication of distress. Both the Indonesia and Taiwanese versions of the DT have been validated 15,16 . Afterwards, the patient was asked to ll the Problem List (PL) that accompanies the DT to check whether they experienced any of the problems listed during the previous 7 days. The

Data analysis
Statistical Package for Social Science (SPSS 22.0) was used for data analysis. We used percentages to determine the frequency of demographic and clinical characteristics of patient groups as well as the answers for each question in each PL domain. A Chi-square test was used to identify differences between the demographic, clinical characteristics and PL of both groups. To explore the association between demographic and clinical characteristic factors with distress, independent t-test and One-way Anova were applied. Furthermore, a multiple linear regression model using enter method was created to examine which variable best predicts the distress among ACPs from both countries. Covariables were introduced into the nal model. All signi cant demographic factors and problems were included in the model. A p value of 0.05 was set as the level of signi cance.

Demographic and clinical characteristics
The data of 286 (65%) patients with advanced cancer collected in an Indonesian referral hospital were compared with the data of 78 (41.2%) patients with advanced cancer in Taiwan. Table 1 shows the differences in the demographic data and clinical characteristics of both countries. **The patient received more than one type of therapy such as chemotherapy and radiotherapy Overall, more than 50% of both the Indonesian and Taiwanese patients were married, not working, and had an income level similar to or above the national minimum wage. Most of them had been diagnosed more than six months previously. The results also reported that Indonesian and Taiwanese respondents had different characteristics in regards to gender, educational level, stage of cancer and type of therapy. The differentiations were statistically signi cant (P value < 0.001). The ratio of women to men was disproportionate in both study groups. The majority of Indonesian respondents were females while most Taiwanese patients were male. Overall Indonesian respondents were younger than Taiwanese participants. Additionally, 3.1% of Indonesian patients had college level education or above compared with 39.7% of Taiwanese participants. Regarding the stage of disease, more than half of the Indonesian patients had stage 3 cancer while half of the Taiwanese patients had stage 4 cancer. Of the Indonesian participants, two-thirds followed more than one treatment therapy opposed while two-thirds of Taiwanese patients received only one. In the emotional problems domain, Indonesians reported depression, nervousness and sadness more often than Taiwanese. Interestingly, the domain spiritual/religious problems present the biggest gap among these two countries. In the physical problems domain, fatigue, fever, mouth sores, nausea, pain and tingling in feet differed signi cantly between Indonesian and Taiwanese participants where Indonesian respondents reported additional problems. Summary relationships of all problems between Indonesian and Taiwanese respondents are presented in Table 2.   We conducted a comparative study among Indonesian and Taiwanese patients with advanced cancer to compare psychological distress and explore determinants of this distress between the two countries.

Determinants of Distress between Indonesian and Taiwanese Respondents
Overall, we found that ACPs in Indonesia have higher distress than Taiwanese patients. Indonesian patients also reported more problems in most of the PL domains. These ndings correspond with previous ndings 15,16 . Such differences may result from more needs going unmet as has been found among ACPs in lower economic level countries as compared to stronger economic countries 18 . However, in our study it is worth noting that these differences may also be related to gender differences, as most Indonesian respondents were female. Women seem more willing to show their distress while men tend to be more reluctant 19 . Thus, women are more likely to have concordant screening results of DT 15 .
This study's results highlight that the prevalence of most problems were higher among Indonesian than Taiwanese patients. Housing and childcare problems were the top two practical problems among Indonesian participants, while 5% of Taiwanese patients reported these problems. This may re ection age differences between the two countries as almost half of the Indonesian respondents were in the youngand middle-age groups. Pangestu et al. (2018) 20 found that over 90% of cancer patients in Indonesia suffer nancial hardships due to their disease. Despite the availability of national health insurance, the cost of cancer treatment in Indonesia remains high often creating nancial di culties. Hence, it is not surprising that most Indonesian participants had housing problems. The higher rate of childcare problems reported by Indonesian respondents may relate to young-and middle-aged adults in Indonesia often have dependent children. Having advanced cancer puts pressure on them as their illness impacts their parental role, a predisposing factor to distress among parents with advanced cancer 21 . Additionally, most Indonesian respondents in this study were woman. As woman, compared to men, spend more time on parenting, housework and managing family care 22 it is reasonable that childcare concerns contribute to distress among our sample. Contrarily, housing and childcare were not common sources of distress for Taiwanese participants. This may result from most Taiwanese participants being male and in the elderly adult group. Most elderly adults already have stable lives and are nancially secure. Consequently, housing generally is not a problem and children would not still be dependent on them.
In relation to family problems, dealing with one's partner was the primary concern, possibly due to most Indonesian respondents being middle-aged women who suffered from cancer in the reproductive system. Diagnosis of advanced cancer and the following treatment have negative effects on the sexual, psychological and social functioning of patients, which may negatively impact their relationship with their partner 23 . In comparison, the main concern in the family domain among Taiwanese participants were family health issues. This may be connected to the advanced age of most Taiwanese participants and their concerns for other aging family members. Unsurprisingly, the present study found that most emotional problems have signi cant difference between the two countries. Komariah et al.'s (2021) 24 study on the needs of ACPs in Indonesia showed that psychological support was the second unmet need ranked by patients. Lack of psychological support will lead to emotional problems. Unfortunately, the screening and referral system for distress has not been well established in Indonesia. The overload of HCPs limits patient-staff interactions, further restricting the ability for patients' emotional problems to be adequately screened 25 . The Taiwanese healthcare context is quite different. A recent survey suggested that cancer patients in Taiwan have good care experiences 26 .
The spiritual/religious domain presented the biggest gap between Indonesian and Taiwanese participants. Religion is fundamental in most Indonesians' lives, therefore, they try their best to sustain their religious practices until their death 27 . However, having advanced cancer may limit their ability to perform certain practices. Central spiritual needs for Indonesian Muslim cancer patients, such as praying ve times a day, were identi ed as the most important needs one could not meet 28 . Not ful lling spiritual needs negatively effects emotional wellbeing since spirituality is positively and signi cantly related to emotional wellbeing 29 . The religious context is quite different in Taiwan, where beliefs have been in uenced by Confucianism, Taoism and Buddhism. Many Taiwanese believe that suffering, including having advanced cancer, is a universal human experience. Considering this, Taiwanese strive to do as much goodness as possible to overcome bad karma and be led to a better afterlife 30 .
Although Indonesia and Taiwan are different culturally and in terms of economic development, our results show that most physical problems are similar and comparable except for fatigue, pain, nausea and mouth sores. However, fatigue and pain were still the most often reported physical problems among both participant groups and at comparable rates to other studies. Patients with advanced cancer commonly experience fatigue and consider it a disabling symptom since it can persist for years after treatment 31 . Fatigue was reported by 72.7% and 44.9% for Indonesian and Taiwanese patients respectively. These rates are similar to the prevalence of fatigue among ACPs around the world which ranged from 43-64%, the higher rates are more prevalent among female patients, speci cally those with gynaecological cancer 32 . Therefore, it is not surprising that the incidence of fatigue was higher among Indonesian respondents who were commonly female and suffered from gynaecological cancer.
Pain severity was signi cantly related with psychological distress among ACPs 33 . Although Taiwanese patients were satis ed with their physicians in terms of pain control, treatment of cancer pain is still suboptimal as more than 70% of physicians do not prescribe analgesics based on their patient's current status 34 . Interestingly, Indonesian patients experienced more pain in this study. Incompetent assessment of pain, doctors' and patients' reluctance to use opioids due to addiction fears and the di culties of obtaining morphine due to complicated and tight regulation have been identi ed as reasons for inadequate pain management in Indonesia 35 . Indonesian patients more often mentioned having mouth sores and nausea than Taiwanese patients. In this study, most Indonesian patients followed more than one treatment, which may cause worse side effects and put them at risk of malnutrition. Mouth sores and decreased food intake have been reported as severe enough to cause nutrient de ciency among ACPs, and have been associated with distress 36 .
In this study, we surprisingly found that depression was associated with lower distress among Indonesian respondents. This corresponds with Chew et al.'s (2017) 37 longitudinal study that found depression could alter distress in chronic diseases. Possibly, patients who had depression had already constructed their coping strategy which helps them deal with their diseases. These strategies may later be useful to combat further distress 37 . Inconsistent with previous research 38 , our research found patients in stage 4 had lower distress. The differences in these ndings might result from most Indonesian respondents having been diagnosed with reproductive cancer, particularly breast cancer. Similar to previous research, presence of metastases (stage 4) was associated with emotional distress except for breast cancer patients 39 . Transportation was also a source of distress for Indonesian participants. Indonesia consists of thousands of islands. Frequently patients have to rent private transportation and travel for long distances to access HCPs. Thus, patients may experience physical discomfort, time consumption and high costs which contribute to psychological distress 40 .
A noteworthy nding of this study was that only physical problems accounted for a signi cant amount of variance in distress among Taiwanese participants. Contrarily, Indonesians reported practical and emotional problems as determinant factors for distress. This aligns with Peters and colleagues' (2020) 38 study who found that younger people more frequently reported practical and emotional problems. Surprisingly, in this study, we also found that Taiwanese patients who had problems with appearance had lower distress scores. As most of the Taiwanese participants were male, this may be largely in uenced by gender. Since males are more focused on body function than body appearance, they will have more distress when their body malfunctions 41 .
Finding from our comparative study provide important insight into understanding distress and PL among ACPs in Indonesia and Taiwan. Future collaboration to deliver interventions considering cultural and healthcare system differences between two countries should be developed. Furthermore, collaborated research should incorporate multiple research sites in each country and larger sample sizes into longitudinal research designs to enhance the generalizability of study results.

Limitations
This study has several limitations. Differences reported by the PL may have been in uenced by the sample sizes, type of cancer, treatment and age of respondents, aspects that we did not explore. Speci c attention to these aspects may provide additional data enabling better interpretation of the results reported here. Moreover, distress sources were assessed using dichotomous (yes/no) answers, prohibiting information on variation of symptom severity that might impact the level of distress being explored. Finally, this study did not account for co-morbidities or certain lifestyles that may have in uenced distress sources. Hence, caution must be applied when generalizing these ndings.

Conclusions
To the best of our knowledge, this is the rst study to compare distress and its PL between ACPs in Indonesia and Taiwan. The results of this study primarily highlight differences of distress sources between patients in Indonesia and Taiwan. As predicted, Indonesian patients tend to experience more problems than Taiwanese, and spiritual/religious problems present the biggest gap among these two countries. Despite these differences, most physical problems did not differ signi cantly. These similarities contradict our hypothesis, possibly because physical problems among ACPs generally do not differ considerably. Furthermore, in both countries, pain and fatigue had the highest prevalence in the physical domain. This suggests important challenges for improving quality of care in both countries, such as amending pain control and fatigue management regulations. Notwithstanding these similarities, spiritual needs require increased professional attention among Indonesian patients in order to manage their distress and increasing comfort.