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Table of Contents
ORIGINAL ARTICLES
Year : 2022  |  Volume : 5  |  Issue : 1  |  Page : 25-34

Assessment of psychological and physical distress among Indian adolescents and young adults with solid cancer using the NCCN Distress Thermometer and Rotterdam Symptom Checklist


1 Department of Medical Oncology, Sri Aurobindo Institute of Medical Sciences, Indore, Madhya Pradesh, India
2 Department of Radiology, Sri Aurobindo Institute of Medical Sciences, Indore, Madhya Pradesh, India

Date of Submission09-Apr-2022
Date of Decision06-Jun-2022
Date of Acceptance10-Jun-2022
Date of Web Publication02-Sep-2022

Correspondence Address:
Dr. Shiv Prasad Shrivastava
Department of Medical Oncology, Sri Aurobindo Institute of Medical Sciences, Indore, Madhya Pradesh 453555
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jco.jco_2_22

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  Abstract 

Purpose: The incidence of cancer has increased in India with a visible impact on the young population (aged 15–39 years). The present study aims to evaluate psychological and physical distress and symptom burden in Indian adolescents and young adults (AYAs) with solid cancer using the National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) and Rotterdam Symptom Checklist (RSCL). Materials and Methods: This prospective, cross-sectional (n = 259) study included AYAs (aged 15–39 years) with histological diagnosis of solid organ malignancy. Patients’ demographic and clinical information were collected. The symptom burden of patients was assessed using the NCCN DT score and RSCL over the trajectory of three time points. Results: Of the 259 patients, 63% were women and 37% men; the median age was 34 years. In total, 71 (27%) were ≤24 years old and 188 (73%) were >24 years old. Bone sarcoma (39%) and germ cell tumor (31%) were the common subtypes in AYA patients aged ≤24 years and breast cancer (21%) in >24 years of age. The distress scores in both the groups were highest at diagnosis (T1) followed by that measured at 1 (T2) and 3 months (T3) after diagnosis. Among AYA patients >24 years old, worry, nervousness, sadness, transportation, and sleep were the top 5 identified problems and in ≤24 years old, the top identified problems were worry, financial support, sleep, nervousness, and sadness. Conclusion: The principle factors related to distress that were identified in Indian AYAs with cancer were: worry, nervousness, sadness, and sleep. The DT and RSCL are useful screening tools for the assessment of psychological and physical distress in AYAs cancer. Early identification of distress burden with the DT and effective interventions in patients with cancer could improve outcomes including survival. Regular screening for psychological distress and substance-cessation counseling will aid in early interventions, thereby improving outcomes in AYAs with cancer in India.

Keywords: Adolescent and young adults, NCCN Distress Thermometer, physical distress, psychological distress, Rotterdam Symptom Checklist


How to cite this article:
Shrivastava SP, Elhence A, Jinwala P, Bansal S, Chitalkar P, Bhatnagar S, Patidar R, Asati V, Reddy PK. Assessment of psychological and physical distress among Indian adolescents and young adults with solid cancer using the NCCN Distress Thermometer and Rotterdam Symptom Checklist. J Curr Oncol 2022;5:25-34

How to cite this URL:
Shrivastava SP, Elhence A, Jinwala P, Bansal S, Chitalkar P, Bhatnagar S, Patidar R, Asati V, Reddy PK. Assessment of psychological and physical distress among Indian adolescents and young adults with solid cancer using the NCCN Distress Thermometer and Rotterdam Symptom Checklist. J Curr Oncol [serial online] 2022 [cited 2022 Oct 3];5:25-34. Available from: http://www.https://journalofcurrentoncology.org//text.asp?2022/5/1/25/355583


  Introduction Top


The annual burden of cancer cases in India has increased which has a significant impact on the young population. A recent trend has shown that the incidence of cancer is increasing in adolescent and young adults (AYAs) in India.[1],[2] The Global Burden of Diseases 2019 Adolescent and Young Adult Cancer Collaborators report the AYA cancer burden of 1.19 million cancers and 396,000 deaths among people aged 15–39 years.[3] Cancer is one of the leading causes of disease-related deaths among both men and women in the AYA population.[4] Common solid cancers in young adults are breast cancer, germ cell tumor, sarcomas, lymphomas, brain tumors, cervical carcinomas, and colorectal and thyroid cancers.[5]

Cancer in early adult life is associated with infertility, sexual dysfunction, cardiovascular disease, and a second cancer.[6],[7],[8],[9] Young adults with cancer face unique psychological challenges in seeking cancer-related information, treatment-adherence, coping with treatment-related side effects, and stress.[10] The psychological distress due to treatment-related symptoms and toxicities can result in decreased attendance in school, altered social profile, distorted relationships, high expenses, poor sexual life, and poor survival.[11] Physical problems such as appetite loss, nausea, vomiting, fatigue, and insomnia negatively affect the AYA cancer patient’s well-being.[12],[13],[14],[15] Studies have suggested that most of the adult patients diagnosed with cancer suffer from disease or treatment-related adverse effects and symptom burden. The National Comprehensive Cancer Network (NCCN) defines distress as a multi-factorial unpleasant experience of physical and psychological problems that may interfere with the ability to cope effectively with cancer treatment.[16] Interventions can be planned after factoring in the poor psychological outcomes.[17] The psychosocial morbidity can be measured using tools to monitor the health-related quality of life (HRQoL). The Distress Thermometer (DT) and Rotterdam Symptom Checklist (RSCL) are useful screening tools to assess distress and symptom burden in AYA patients with cancer.[18]

A few epidemiological studies have utilized a standardized screening tool to evaluate psychological distress changes among AYAs with cancer.[19],[20] The present study aims to evaluate distress and symptom burden across a trajectory of three time points over a 3-month period following diagnosis.


  Materials and Methods Top


Study design

A prospective, cross-sectional study on AYA cancer patients was conducted at Sri Aurobindo Institute Medical Sciences (SAIMS) Indore, Madhya Pradesh, India between September 2020 and August 2021. The study was conducted in accordance with the International Conference on Harmonization-Good Clinical Practices (ICH-GCP) and the applicable legislation on non-interventional studies. A self-administered questionnaire in English and Hindi language was handed over to participants at three time points: at treatment commencement (T1) and at 1 and 3 months (T2 and T3, respectively) into therapy. The study protocol was approved by the Institutional Ethics Committee (IEC No. SAIMS/IEC/2021/21). An informed consent before study participation was obtained. Patients younger than 18 years were ascent-consented by their legal guardians.

Inclusion and exclusion criteria

Newly diagnosed patients (age 15–39 years) with solid organ malignancy, having ability to understand the questionnaire, were included. Patients with hematological malignancies and/or those with co-morbid conditions including lung, heart diseases, diabetes, and/or neuropathic pain were excluded from the study.

Patients and methods

The demographic and clinical characteristics of AYAs with cancer, such as age, sex, education status, marital status, social history including smoking status, alcohol use, and financial support, were recorded. Assessment of physical and psychological symptom burden of patients using the NCCN DT and the RSCL was performed at the three time points over a period of 3 months.

Emotional distress can be defined as a state of mental anguish that ranges from normal sadness and fear to non-specific distress and poor quality of life to depressive and anxiety disorders.[21],[22],[23]

The NCCN Distress Thermometer (DT)

The DT was developed by the NCCN to measure cancer patients’ distress. Patients rate their distress level, on a scale from 0 to 10, with 0 being the lowest and 10 being the highest.

In addition, it included a list of problems that were categorized into five domains for selection by patients: (1) practical, (2) family, (3) emotional, (4) spiritual or religious, and (5) physical. The DT was chosen due to its ease and specificity. A score of ≥ 4 corresponds to clinically significant distress in cancer patients.

Rotterdam Symptom Checklist (RSCL)

The RSCL was used to evaluate symptom burden in cancer patients. The RSCL checklist collects data on both psychological and physical symptoms. It is a questionnaire with 7 items describing practical problems, another 6 items describing emotional problems, and 22 items describing the patients’ physical problems. The checklist records participants rating their severity on a four-point Likert-type scale such as “not at all”; “a little”; “quite a bit”; and “very much”; a high score indicates a greater degree of discomfort.

Statistical analysis

Data was analyzed using Statistical Package for the Social Sciences (SPSS) software, version 23.0. The normal distribution of quantitative data was determined by the Shapiro–Wilk test. Independent sample t-test was used for comparison of two independent groups. The χ2 test was used to analyze differences between categorical variables from two independent groups. P < 0.05 was considered statistically significant.


  Results Top


Demographic characteristics

In total, 259 patients (188 women and 71 men) were recruited into the study. The median age of the patients was 34 years. Seventy-one (27.4%) were ≤24 years old and 188 (72.6%) were >24 years old. The proportion of patients with stage II, III, and IV disease was 19.3%, 63.3%, and 17.4%, respectively. Of the 259 patients, 80 patients had breast cancer, 37 had germ cell cancer, and 25 had ovarian cancer [Table 1].
Table 1: Demographic characteristics

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Cancer incidence by age

Among AYA patients aged ≤24 years, osteosarcoma (18.3%), Ewing sarcoma (21.1%), and germ cell tumor (31.0%) were the most common types of cancer. In AYA patients aged >24 years, breast cancer (21.3%) was the most common cancer [Table 2].
Table 2: Cancer incidence by age

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Trajectory of distress level over three time points

The average distress score in the age ≤24 years was the highest (6.7) at T1, followed by that measured at T2 (2.6) and T3 (1.1). The average distress score in the age >24 years was the highest (6.6) at T1, followed by that measured at T2 (2.6) and T3 (1.2). The distress score decreased through the treatment period in both the age groups. Distress levels at all time points did not differ among patients with different disease statuses. The average difference in distress score between T1 and T2, T1 and T3, and T2 and T3 was 0.048 (P = 0.875), 0.029 (P = 0.905), and 0.036 (P = 0.763), respectively [Table 3].
Table 3: Trajectory of distress level over three time points

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Analysis of the DT problems list across the three time points

At each time point, most problems belonged to the practical and emotional domains. At T1, these were worry (100%), nervousness (93.1%), sadness (93.1%), transportation (88.8%), sleep (88.4%), depression (86.5%), financial support (86.5%), loss of interest in daily activity (78.4%), pain (71.4%), appearance (49.8%), and loss of sexual interest (49.4%).

At T2, major problems included nausea (82.2%), transportation (77.6%), fatigue (70.7%), depression (58.7%), sleep (55.6%), indigestion (53.7%), sadness (52.9%), worry (52.1%), loss of interest in daily activity (50.2%), and diarrhea (50.6%).

At T3, major problems identified included worry (81.5%), transportation (81.1%), fatigue (78.0%), nervousness (74.5%), sadness (61.0%), nausea (51.7%), and financial support (52.1%).

Among AYA patients >24 years old, worry (100.0%), nervousness (94.1%), sadness (94.1%), transportation (89.4%), and sleep (87.2%) were the top 5 causes of distress.

Among AYAs ≤24 years old, the top 5 causes were worry (100.0%), financial support (91.5%), sleep (91.5%), nervousness (90.1%), and sadness (90.1%).

The distress significantly changes with time which included childcare, work/school, dressing, indigestion, loss of sexual interest, dry skin, tingling hands/feet (P < 0.001, each), change in urination (P = 0.008), eating (P = 0.041), and swelling (P = 0.030) [Table 4].
Table 4: Analysis of the distress thermometer problems list across the three time points

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Analysis of the RSCL at diagnosis (T1)

The most prevalent symptoms across diagnosis points for patients who were ≤24 and >24 years old were irritability (31% in the age group ≤24 years and 27.1% in the age group >24 years) and worry (23.9% in the age group ≤24 years and 20.7% in the age group >24 years) [Table 5].
Table 5: Analysis of the Rotterdam Symptom Checklist at diagnosis (T1)

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Analysis of the RSCL across 1 month after diagnosis (T2)

After 1 month of commencing treatment, the most prevalent symptom across T2 for patients who were ≤24 and >24 years old was despairing about the future (31.0% in the age group ≤24 years and 21.8% in the age group >24 years). The problems that showed statistically significant changes with time included worry (P = 0.048), nausea (P = 0.001), pain while swallowing (P < 0.001), and loss of hair (P < 0.001) at T2 [Table 6].
Table 6: Analysis of the Rotterdam Symptom Checklist across 1 month after diagnosis (T2)

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Analysis of the RSCL across 3 months after diagnosis (T3)

After 3 months of diagnosis, the most prevalent symptom across T3 for patients who were ≤24 and >24 years old was despairing about the future (35.2% in the age group ≤24 years and 27.1% in the age group >24 years). The problems that showed statistically significant changes with time include pain while swallowing (P < 0.001) and loss of hair (P < 0.001) at T3 [Table 7].
Table 7: Analysis of the Rotterdam Symptom Checklist across 3 months after diagnosis (T3)

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Stepwise regression of the DT with RSCL symptom burden domains at T1, T2, and T3

Distress scores were significantly associated with psychological symptom burden such as worry (P = 0.001) and despairing about the future (P = 0.009) at T1 and worry (P = 0.001) at T2. Significant associations were also observed between distress scores and physical symptom burden items such as decreased sexual interest (P = 0.004) and constipation (P = 0.049) at T1 and loss of hair (P = 0.036) at T3 [Table 8].
Table 8: Stepwise regression of the distress thermometer with Rotterdam Symptom Checklist symptom burden domains at T1, T2, and T3

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  Discussion Top


The present study evaluated distress and symptom burden among Indian AYA cancer patients. Distress scores in both the groups (≤24 and >24 years) were higher at T1 than at T2 and T3. Most of the reported problems among AYA patients were practical and emotional in nature. Among AYAs older than 24 years, worry, nervousness, sadness, transportation, and sleep were the top 5 problems, whereas in age ≤24 years worry, financial support, sleep, nervousness, and sadness predominated. The most prevalent symptoms across time-points for patients were irritability and worry. Several psychological and physical symptoms were significantly associated with higher distress scores.

A population-based study on a large population (n = 3199) reported higher prevalence of psychological disorders in patients of the younger age groups.[24] Massetti et al.[25] reported that mental disorders are more common in AYA cancer patients aged 18–29 years. The AYA HOPE study concluded that AYAs with cancer are at higher risk for developing poor psychosocial outcomes when compared with the general population.[26] Gopalan et al.[27] reported 41.7% prevalence of anxiety or depressive disorders among cancer patients. The present study also indicates higher prevalence of distress among AYA cancer patients.

Alcohol was associated with poor mental health, depressive symptoms, poor life satisfaction, and poor well-being in AYAs.[28] Rose et al.[29] noted a strong correlation between alcohol consumption and mental disorders in adulthood. Studies have also shown a positive correlation between cigarette smoking and the risk of mortality among adults with cancer.[30],[31] Morrison et al. confirmed that regular smoking habits in cancer patients increased the risk of developing emotional problems and poor mental health.[32] In the present study, tobacco and alcohol consumption were common in AYA cancer patients. Charlet and Heinz[33] showed an association between reduced alcohol intake and improved mental health and physical function. Jassem[34] suggested that clinicians must address both addictions and depression in patients with cancer to alleviate treatment complications and improve survival.

In the present study, distress scores were highest at commencement of treatment (T1) and tended to decrease thereafter (at T2 and T3). Other studies have shown that distress was high at diagnosis and reduced after diagnosis.[35],[36] A longitudinal study evaluated that about half of the AYAs experienced significant distress at diagnosis.[18] The nature of illness, difficulty, and uncertainty in treatment create a wide range of psychological concerns in AYAs with cancer.[18] Additionally, a meta-analysis showed that depression is associated with higher cancer incidence and mortality.[37] Therefore, interventions on the physical and psychological management of cancer treatment, early after diagnosis, can prevent escalation of distress and improve treatment outcomes.

In the present study, the majority of the patients reported emotional problems. At the time of diagnosis, almost all patients reported being worried, and more than a quarter of the patients reported depression, nervousness, sadness, and loss of interest in daily activity. These emotions are associated with anxiety and depression. A study from India indicated that patients with breast cancer had lower scores of anxiety (mean score: 8.6 vs. 11.1; P < 0.001) and depression (mean score: 6.9 vs. 5.1; P < 0.001) at 12-month post-treatment when compared with pre-diagnosis.[38] Untreated anxiety and depression can have a negative impact on life with lasting consequences including reduced survival. Training nurses, counselors, and navigators in communication and assessment skills to recognize anxiety and depression in cancer patients would be helpful in identifying different types of distress.[39]

Financial problems are generally due to low family income[40] and lack of insurance coverage. In the present study, the majority of the patients reported problems like lack of financial support and lack of health insurance. Poor availability of transport services posed a difficulty in reaching hospital for treatment from rural areas, which was also a practical problem.

Among AYAs of different age groups (≤24 and >24 years old), worry, nervousness, sadness, and sleep were the common. Moreno-Smith et al. reported fatigue, nervousness, and sleep difficulties were associated with poor disease outcomes.[41] The assessment of these emotional problems may be helpful in diagnosing depression in cancer patients.

The concept of symptom burden is commonly used in medical and psychological literatures. It denotes symptoms experienced by patients as a result of the chronic or terminal illnesses or associated treatments.[42] Patients with advanced cancer experienced a significant psychological and physical symptom burden which was associated with poorer HRQoL.[43] It is a recommended metric of psychological and physical status among patients affected by severe and chronic diseases, including cancer.[44],[45] The RSCL has been validated in different countries and languages for the assessment of symptom burden.[46] Desai et al.[47] evaluated distress screening with the NCCN distress thermometer in a tertiary cancer center in rural India. Although NCCN DT had identified actionable distress in 41.4% of cancer patients, the NCCN DT is not feasible to do routine distress screening at center. Chan et al.[48] evaluated the symptom burden and HRQoL using the RSCL and DT. The RSCL provided a reasonable screening tool to assess overall symptom burden in AYA patients with cancer. Similarly, in the present study, RSCL confirmed a significant association between distress scores and physical symptom burden.

A statistically significant association was observed between the DT and RSCL symptom burden items in the present study population. Several psychological and physical symptoms, such as worry, despair, decreased sexual interest, and constipation, were significantly associated with distress scores. Chan et al.[18] demonstrated the significant relationship between several RSCL symptoms including dizziness, loss of hair, sore muscles, dry mouth, lower back pain, sore mouth, fatigue, worry, depression, nervousness, despair, and DT.

Other studies provide evidence supporting association of anxiety/depressive symptoms and fatigue with the cognitive function observed in patients with cancer.[49] Interestingly, these screening tools were designed to measure stress levels in patients with cancer. The use of DT and RSCL will help clinicians design future management strategies for cancer in AYA population.


  Conclusion Top


The principle factors related to distress that were identified in Indian AYAs with cancer were: worry, nervousness, sadness, and sleep. The DT and RSCL are useful screening tools for the assessment of psychological and physical distress in AYAs cancer. Early identification of distress burden with the DT and effective interventions in patients with cancer could improve outcomes including survival.

Regular screening for psychological distress and substance-cessation counseling will aid in early interventions, thereby improving outcomes in AYAs with cancer in India.

Acknowledgement

None.

Financial support and sponsorship

Nil.

Conflicts of interest

No conflicts of interest to be declared.



 
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8]



 

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