|Year : 2022 | Volume
| Issue : 2 | Page : 131-138
Quality of life assessment and supportive management in a cancer outpatient setting in Saudi Arabia
Kim Sadler1, Gassan Abudari2, Ala Sami Sweilem1, Musab Aldhari3, Fahhad Motni AlShammari1
1 Department of Oncology and Liver Diseases, King Faisal Specialist Hospital and Research Center, Greenville, North Caroline, United States
2 Vidant Medical Center, Greenville, North Caroline, United States
3 Department of Oncology, King Faisal Specialist Hospital and Research Center, Greenville, North Caroline, United States
|Date of Submission||16-Mar-2022|
|Date of Decision||12-Jun-2022|
|Date of Acceptance||13-Jun-2022|
|Date of Web Publication||22-Aug-2022|
Department of Oncology and Liver Diseases, King Faisal Specialist Hospital and Research Center, Riyadh
Source of Support: None, Conflict of Interest: None
Background: Despite improvement in treatment modalities, a cancer diagnosis and its related treatments continue to cause significant distress. Aims: This study analyzed the prevalence of common symptoms, as well as the influence of various sociodemographic, clinical, and treatment characteristics on the quality of life (QoL). Methods and Materials: Data were gathered through the administration of the Quality of life questionnaire (QLQ-C30) from the European Organization for Research and Treatment of Cancer Patients (EORTC) to a Saudi adult population receiving treatments. Statistical Analysis: Data were analyzed using t test, one way analysis of variance (ANOVA), Pearson's correlation test and linear regression analysis. Results: Four hundred patients (median age = 48) were surveyed (women = 58.5%). More than half had breast or gastrointestinal cancer. The Global QoL score was 71.1 with a 95% confidence interval (68.9–73.3). The lowest functional scale was Physical (69.8%). The most prevalent symptoms were fatigue (40.6%) and insomnia (39.1%). Men showed a higher emotional (P = 0.048) and cognitive (P = 0.013) functioning. Married patients reported better physical (P = 0.027) and cognitive (P = 0.004) functioning. Education was associated with better physical functioning (P = 0.003). More financial stress was present when caring for children (P = 0.017), living alone (P = 0.01), and living outside the treatment region (P = 0.001). Gaps were found between reported symptoms and provided treatments, especially for pain, constipation, and insomnia. Palliative care was involved in 7.5% of cases and mostly when higher levels of fatigue (P = 0.002), pain (P = 0.001), dyspnea (P = 0.05), and lower functioning were present. Conclusion: Significant differences were found according to sociodemographic, clinical, and treatment patients' characteristics, as well as significant gaps between reported symptoms and management plans in place. This study showed that various factors can influence the QoL and this knowledge can enable the provision of better support to maintain the QoL.
Keywords: Cancer, EORT-QLQ-30, oncology, palliative care, quality of life, Saudi Arabia, symptoms
|How to cite this article:|
Sadler K, Abudari G, Sweilem AS, Aldhari M, AlShammari FM. Quality of life assessment and supportive management in a cancer outpatient setting in Saudi Arabia. Saudi J Health Sci 2022;11:131-8
|How to cite this URL:|
Sadler K, Abudari G, Sweilem AS, Aldhari M, AlShammari FM. Quality of life assessment and supportive management in a cancer outpatient setting in Saudi Arabia. Saudi J Health Sci [serial online] 2022 [cited 2022 Oct 3];11:131-8. Available from: https://www.saudijhealthsci.org/text.asp?2022/11/2/131/354162
| Introduction|| |
The prevalence of cancer in the Middle East and the Gulf area is rising and is expected to double by 2030. In 2020, according to the International Agency for Cancer Research (IARC), almost 28,000 new cases were diagnosed in Saudi Arabia. If a decline in mortality rate due to an overall improved detection and better access to treatments is witnessed in the region, a large proportion continue to present with advanced disease at diagnosis., Despite improvement in cancer management, studies continue to show that cancer is associated with significant unrelieved physical and emotional suffering., There is a growing interest in better assessing the quality of life (QoL) as it leads to better treatment outcomes. Physical well-being can alter treatment plans and treatments affect the QoL. Poorly controlled symptoms may result in serious limitations in daily activities and overall functioning. These symptoms can lead to nonadherence to treatments. “QoL” is a multidimensional concept entailing physical, emotional, and social facets of well-being and is also influenced by culture and spirituality. Lately, in Saudi Arabia, several studies assessing the burden of cancer have been conducted. Babgi found that pain was the most commonly feared symptom. It affects daily activities (93,2%), sleeping patterns (80,3%), concentration (34.1%), and social relationships (43.2%). In another study, colorectal cancer patients were also found to experience frequent pain (77.5%) (n = 40). In a palliative care clinic, 85.5% reported having pain and 51% of moderate-to-severe intensity. Moreover, patients experienced on average 5.1 non-pain symptoms. Tiredness and loss of appetite were the most severe ones. In Jordan, patients reported a median of six symptoms (n = 175), with fatigue and lack of appetite as the most frequent.
Patients with cancer are at greater risk for a high level of emotional pain. The following studies were also conducted in Saudi Arabia. A breast cancer diagnosis was shown to have a significant impact on functional, mental, and emotional well-being. Women with breast cancer with poor support and altered body image experienced powerful emotional distress. Loss of control over the current situation and fear of having a recurrence or metastases were found to be important psychological sources of distress. Depression, sexual problems, and fertility issues were reported to compromise the QoL and seemed to be rarely addressed.
A cancer diagnosis can have a significant impact on the social life of an individual. It may affect his/her roles within the family and in the larger community. The disease may bring several social challenges such as an increased financial burden related to a loss/lack of employment and the costs of traveling for treatments, difficulties to fulfill parental responsibilities, and social isolation from the usual support network when treatments are taking place remotely from home. The concept of QoL should also be considered through cultural lens. Western models of supportive care may very well not apply to a Middle Eastern culture due to a lack of consideration for the uniqueness of the family and community systems in the region. For example, in the Gulf area, support predominantly comes from close and extended family as well as the community instead of external sources.
The goal of this study was to provide a comprehensive assessment of the QoL of adults receiving oncological treatments in an outpatient setting as well as the types of supportive treatment provided. The study examined the prevalence of common multidimensional symptoms and the influence of sociodemographic, clinical, and treatment characteristics on the QoL.
| Methodology|| |
This cross-sectional study was conducted in a tertiary hospital and cancer center in Saudi Arabia. A convenient sampling method was used. The participation was based on volunteered verbal consent. The inclusion criteria were Saudi nationality, 18 years and over, cancer diagnosis (any stage), capacity to consent and fill questionnaires independently. Data were collected from June 2020 to January 2021 using the European Organization for Research and Treatment Questionnaire (QLQ-30-version 3.0, in Arabic), and a chart review. The EORTC QoL group granted permission to use the questionnaire and associated measures for academic purposes. The study was conducted according to the principles of the Declaration of Helsinki and received approval from the hospital research ethics committee. A verbal consent was taken from participants and confidentiality was maintained.
EORTC-QLQ-C30 questionnaire (Version 3.0)
The EORTC-QLQ-C30 is a self-administered 30-item questionnaire assessing the QoL in patients with cancer. It contains five functional scales (physical, role, cognitive, emotional, and social), one global health status/QoL scale, and three symptom subscales (fatigue, pain, and dyspnea). There are five additional single-item symptom scales: insomnia, appetite loss, constipation, diarrhea, and financial difficulties. 28/30 items are scored on a 4-point Likert scale. Two items assessing the global quality of care are scored on a 7-point Likert scale. The scores are converted to 0–100 scores. For the “functional scales” and “global health status/QoL scale,” higher scores mean higher functioning. For the “symptom scales,” higher scores mean more severe symptoms. The reliability and validity of the questionnaire are well established. The Arabic translation was also found to be reliable and valid and has been used in numerous studies conducted in Saudi Arabia,, Bahrain, Kuwait, Jordan, Lebanon,, and Egypt.
The data were managed using REDCap electronic data capture tools. SPSS version 21.0 (Windows) was used for subsequent analyses. Categorical variables were reported as frequency and percentage values and continuous variables with their mean and standard deviation. The EORTC scale results were reported with a 95% confidence interval (CI). P < 0.05 was considered statistically significant. Independent t tests were used to assess differences across various sociodemographic, clinical, and treatment characteristics. When three or more subgroups were present for an independent variable, one-way analyses of variance (ANOVA) were used instead. When the ANOVA revealed a significant difference, post hoc pair-wise comparisons were added. A Pearson's correlation was calculated to determine if significant linear relations between the age and scale scores were present. Finally, linear regression analyses were done to determine if some variables could predict scores on the two lowest “functional scales” and the two highest “symptom scales.”
| Results|| |
Sociodemographic, clinical, and treatments characteristics
A total of 400 patients were surveyed. Their age ranged from 18 to 81 years with a median age of 48. Women accounted for 58.5%. The majority of patients were married (71%, n = 284). 289 (72.2%) had at least a high school degree. 120 (30%) were employed when receiving treatments. 183 (45.8%) were responsible for children aged under 14 years old. More details about demographics can be found in [Table 1]. More than half of the patients had either breast or gastrointestinal cancer and almost half had metastases. The majority of patients received chemotherapy (89.8%, n = 359). Approximatively half had been seen at least once by a social worker 41.5% (n = 166). Only 7.5% (n = 30) had been referred to palliative care and 1.3% (n = 5) to mental health. Nausea was the most addressed symptom (80.8% (n = 323)). 26% (n = 104) patients received weak analgesics and 5.5% (n = 22) stronger analgesics (e.g., morphine). Psychopharmacology addressing sleep, anxiety, or mood issues was used in 10.3% (n = 41) of patients. More details about the sample clinical characteristics can be found in [Table 1].
All scale/subscale scores are presented in [Table 3] and [Figure 1]. The “global QoL scale” mean was 71.1 with a 95% CI (68.9–73.3). The lowest score on the “functional scales,” pointing to the lowest functioning, was for the physical scale. The highest one was for the cognitive scale. On the “symptom scales,” the highest scores, pointing to more acute distress, were for the fatigue and sleep disturbance scales. The lowest scores were for dyspnea and diarrhea.
|Table 2: Clinical and treatment characteristics of the total sample (n=400)|
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|Table 3: European Organization for Research and Treatment Questionnaire scale/subscale results|
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|Figure 1: European Organization for Research and Treatment Questionnaire scale/subscale results and 95% confidence interval|
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EORTC-QLQ-C30 functional scores in relation to patients' sociodemographic, clinical, and treatment characteristics
Age only correlated significantly with the physical scale (r = 0.11, P = 0.027). Men showed higher functioning on both the emotional (P = 0.048) and cognitive scales (P = 0.013). Results on the social scale pointed to lower functioning of employed patients (P = 0.02). Those with children (of all ages) were found less socially functional (P = 0.049). A one-way ANOVA demonstrated that the effect of the marital status was significant for physical (F [3, 396) = 3.08, P = 0.027) and cognitive (F [3, 396) = 4.55, P = 0.004) functioning. Married patients reported an overall better functioning. The educational level had a significant main effect on physical functioning (F [3, 395) = 4.65, P = 0.003). Patients with higher education scored the highest. Metastases were associated with lower physical (P = 0.001) and role (P = 0.027) functioning. Those receiving weak analgesics had lower scores on the physical (P = 0.011) and role (P = 0.032) scales and the “global health status/QoL scale” (P = 0.002). Those referred to palliative care had lower physical (P = 0.001), role (P = 0.006), and social (P = 0.008) functioning. A physiotherapist was likely more involved for those with lower physical (P = 0.001) and social functioning (P = 0.041).
Linear regression analyses were performed for the lowest “functional scales” [Table 4]. The model was significant for the physical scale, R2 = 0.112, F (7, 391) = 7.052, P < 0.001. The educational level (P = 0.043), presence of metastases (P = 0.008), use of moderate analgesics (P = 0.047), referral to palliative care (P = 0.003), and physiotherapist (P = 0.001) were variables that predicted a lower physical functioning. A model was also significant for the social scale, R2 = 0.035, F (4, 390) = 3.52, P = 0.008. The employment status (P = 0.015) and having children (of any age) (P = 0.034) predicted lower scores.
|Table 4: Multiple linear regression for the highest functional scales on the European Organization for Research and Treatment Questionnaire|
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EORTC-QLQ-C30 symptom scores in relation to patients' sociodemographic, clinical, and treatment characteristics
Age only correlated significantly with having diarrhea (P = 0.002). There were no significant differences for any symptom across gender, marital status, level of education, and employment status though patients with children under 14 years reported significantly less pain (P = 0.038) and more financial difficulties (P = 0.017). Those living alone (P = 0.01) or residing outside the central region where treatments were received (P = 0.001) were found to report more financial stress. Having a head and neck tumor was associated with more loss of appetite (P = 0.002). Dyspnea (P = 0.021) and constipation (P = 0.027) were significantly higher in the presence of metastases. Patients receiving weak analgesics reported higher levels of pain (P = 0.001), fatigue (P = 0.001), insomnia (P = 0.037), and constipation (P = 0.003). More pain was reported by those receiving strong opioids (P = 0.002). Patients prescribed adjuvant pain medication (e.g., anticonvulsants) reported more pain (P = 0.001) and fatigue (P = 0.049). When laxatives were prescribed, more constipation (P = 0.001) and pain (P = 0.001) were present.
Multiple linear regressions were performed for the highest “symptom scales” [Table 5]. Since there was only one significant independent variable for insomnia (2nd highest scale), no analysis was conducted for this variable. Instead, the regression model was applied to fatigue and pain. The use of moderate analgesics (P = 0.004) and palliative care services (P = 0.009) predicted 4.6% of the variation on the fatigue scale, R2 = 0.046, F (3, 396) = 6.42, P < 0.001. The use of moderate analgesics (P = 0.002) and palliative care services (P = 0.006) predicted 9.5% of the variation on the pain scale.
|Table 5: Multiple linear regression for the highest symptom scales on the European Organization for Research and Treatment Questionnaire|
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EORTC-QLQ-C30 global health status/QOL score in relation to sociodemographic, clinical, and treatment characteristics
No significant relations were found between any of the sociodemographic, clinical, and treatment characteristics and the “global health status/QoL scale,” except for receiving mild analgesics. These patients had a significantly lower score (P = 0.002).
Gaps between reported symptoms and provided supportive treatments
Of the 41 patients (10.4%) who reported “very much” to having pain interfering with their daily activities, 53.7% were receiving weak analgesics (e.g., acetaminophen), 46.3% moderate analgesics (e.g., tramadol, codeine), and 14.6% strong opioids. Only 9 (22%) of these had been referred to palliative care in the last 6 months. Of the 96 patients (24%) who reported constipation, about half (43.7%) had laxatives ordered. Of the 126 (31.5%) who reported sleeping difficulties, 13 had medication to address it. Palliative care was involved in the care of a total of 30 patients (7.5%) and more likely when higher levels of fatigue (P = 0.002), pain (P = 0.001), and dyspnea (P = 0.05) were present. Nevertheless, even when considering these gaps, 80.3% reported being satisfied with the quality of information they received to manage their symptoms and 82.3% with the attention given to their symptoms by their physician.
| Discussion|| |
This study looked into the prevalence of common symptoms associated with cancer and its treatments and the influence of various factors on the QoL. Considering other studies, where scores ≤33.3% for the “functional scales” and “global health status/QoL scale” indicated problematic functioning and scores ≥66.6% on the “symptom scales” indicated poorly controlled symptoms, the majority of the sample reported being both functional and overall comfortable. Nevertheless, significant differences were found according to sociodemographic, clinical, and treatment characteristics, as well as significant gaps between reported symptoms and management plans in place.
Men were found to have better physical and social functioning, which is consistent with other findings. According to the normative data for the EORTC QLQ-C30 in the general Dutch population, men scored statistically significantly better on most of the “functional scales” and the “global health status/QoL scale. According to more recent normative data in Germany, men tend to score slightly better on the “global health status/QoL scale” and the “functional scales,” except for cognitive and social ones. A better overall physical and cognitive functional status were present in married patients and better functional status with higher educational level. These findings are consistent with studies elsewhere where a single status, a lower education level, not having children, and living alone were associated with a lower QoL.
In general, specialized palliative care services are underused and when referrals are done, it is often at a late stage of the disease and mostly for patients with severe symptoms and an overall poor functional status. In a study conducted in an outpatient setting, Wadhwa et al. reported that late referrals were common and associated with an overall worse symptom severity. In Saudi Arabia, Alsirafy et al. (n = 887) reported a median survival of 19 days from the time of the first referral to palliative care to the time of death; 28% of these first encounters were in the last week of life. Alshammary et al. reported a median interval of 19 days between the first referral and the time of death. Palliative care continues to be strongly associated with end-of-life care, thus depriving patients receiving disease-modifying treatments of additional expertise for their symptom management. Even at the end-of-life, gaps in services utilization exist. In a recent study on the quality of care of patients who died in an emergency department in Saudi Arabia (n = 103), the Palliative Care service was consulted for only 19.4% of patients, and 50% were seen for the first time the day prior to their death.
In the current study, fatigue, insomnia, and pain were the most reported symptoms. This is in line with similar studies. In a sample of women with breast cancer in Saudi Arabia (n = 284), Imran et al. reported insomnia and fatigue as the most distressing symptoms, followed by pain and loss of appetite. Nageeti et al. reported fatigue and insomnia as the most prevalent symptoms in a breast cancer population study in Saudi Arabia. Breast cancer patients reported sleep changes, weight gain, and fatigue as the most prevalent physical symptoms. In neighboring Bahrain (2013) (n = 239), the most distressing reported symptoms were fatigue (35.28%), sleep disturbances (30.12%), and pain (29.97%). In a large research conducted in 17 centers (USA), the most debilitating reported symptoms were pain, fatigue, and emotional distress. It seems that more attention is warranted to assess systematically the presence of these subjective symptoms and how to better address them.
This study showed significant gaps between reported symptoms and current management in place, especially regarding pain, sleeping problems, and constipation. Patients expressed a significant distress over these symptoms, and yet, pharmacological interventions and referrals to other healthcare providers (e.g., dietician, palliative care) were not systematically done. Referrals to the Palliative Care service for symptom management might be infrequent because the disease burden is not systematically assessed.
During cancer treatments, symptoms are often unaddressed, underreported, and undertreated. Many patients are reluctant to discuss them with their health-care professionals. Smith et al. (n = 2487) reported that 30%–50% of patients did not report discussing, getting advice, or receiving help for their pain, fatigue, and emotional distress. More research is needed to better understand this phenomenon. Are patients underreporting thinking that symptoms are “normal” ? Are they afraid that their treatments could be discontinued if they reporting symptoms? Are healthcare providers systematically assessing common symptoms related to cancer and treatment toxicity? Di Maio et al. showed a poor-to-moderate agreement between patients and their physicians concerning the toxicity symptoms reported. A systematic review demonstrated that symptom prevalence was higher when assessed with a questionnaire but <10% of professionals were found to use validated tools. Simple self-reported tools, such as the Arabic Questionnaire of Symptom Assessment, exist and have been validated.
This is a single-center study. A longitudinal design and analysing of the data according to the cancer stage could deepen the understanding of the patients' experience. Including other aspects related to the QoL, but less studied, such as sexual problems, concerns linked to fertility, and body image changes, could enrich the understanding of patients' experiences during treatments.
| Conclusion|| |
Patients with cancer would benefit from having their QoL assessed regularly during their treatments. Better identifying and addressing their multidimensional distress could positively impact their compliance with treatments, overall satisfaction with the disease management, and overall QoL. The QoL could also be improved through a more systematic use of simple validated tools for assessment and a better involvement of multidisciplinary team members in an integrated cancer care model. Measuring the QoL is also important as this measure also serves as an indicator of the quality of the care provided in a center. An earlier integration of palliative care services is warranted, especially for the management of complex multidimensional symptoms. Our study showed that various sociodemographic, clinical, and treatment factors can influence the QoL. Understanding these influences enables to better align the care with the needs. Working toward improving the QoL strengthens the patient–healthcare provider relationship, reduces distressing symptoms, helps patients and their families to better deal with disease-related stressors, engages patients in decision-making, fosters a better treatment compliance, reduces costs and avoidable use of health-care resources, and more importantly, improves outcomes.
We would like to acknowledge Meaad Salamhtallah, Manal Alshameri, Essam Alzahrani, and Sara Alfardan for their assistance in administering the questionnaires; Qasem Alnasr for his assistance in reviewing the initial proposal; the nursing staff from the infusion center for facilitating the data collection; and all the patients who participated and provided us with their time and valuable feedback.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]