Beyond Numbers – Recent Understanding of Emotional Needs of Persons Diagnosed with Cancer 2007–2018

INTRODUCTION

Psycho-oncology, as part of the care of persons diagnosed with cancer, is about 40 years old. Jimmie Holland was the founder of this field.[1] The psycho-oncology has become a subspecialty in the field of oncology, studying the cancer experiences beyond medical treatment.[2] The emotional impact of the diagnosis of cancer is universal. It is this recognition that is reflected in considering 'distress' as the sixth vital component of care. There is high recognition of this aspect of the diagnosis and treatment of cancer in Western settings, where psycho-social support is provided as an essential part of the total care programs, like providing distress management, support to minimize caregiving burden and survivor workshops through the nurses, medical social workers, rehabilitation workers, psychiatrists, and psychologists.[1] However, in India, psycho-oncology is still in the beginning stages. In most of the centers, emotional support occurs more by chance rather than by design.

Epidemiology is a vital tool in public health. The best example of the value of epidemiology in cancer is the establishment of linkage of tobacco use and cancer. This linkage has resulted in massive changes in public policy such as curbs on advertising, restricting the use of tobacco in public places, and taxes on tobacco products, with associated decreased rates of use of tobacco. Similarly, a study found in low cervical cancer risks in different religious groups as Catholic nuns, the Amish, Mormons, and Jews, probably because of a smaller number of sexual partners and lowered infection risk.[3] Conventionally, the purpose of epidemiology is to address seven aspects of understanding health and illness conditions.

Morris described the seven uses of epidemiology. These are: (i) understanding the magnitude of the mental disorders; (ii) the etiological factors; (iii) the morbid risk; (iv) historical study; (v) completion of syndrome picture; (vi) identification of new syndromes; and (vii) treatment utilization.[4]

Studies from the Western countries have demonstrated that the prevalence of emotional distress and psychiatric disorders are different in different cancers, in different stages, in association with different treatments, among the two sexes, depending on the literacy, socioeconomic status, and spirituality.[156] In order for the science and service of psycho-oncology to grow in India, there is a need for an understanding of the prevalence, pattern, and associations of emotional distress in the different groups of the Indian patients. Only such understanding of the Indian patients can lead to routine emotional health support to all persons diagnosed with cancer and their caregivers, as pointed out by Mehrotra “there are ample data on the prevalence of psychiatric morbidity but unclear whether it has had a visible impact on actual screening for significant distress in Indian oncology settings.”[7]

The aim of the review paper is to explore the empirical literature pertaining to all aspects of the epidemiology of emotional problems in persons diagnosed with cancer. The literature spreads over 12 years since 2007–2018 from India, to understand what is known and what areas need future research focus.

METHODS

The investigators used various data base includes PubMed, Google Scholar, ProQuest, EBSCO, and Sage Journals. The terms used were psychosocial oncology, psycho-oncology, psychology, cancer, malignancy, carcinoma, India, intervention, anxiety, depression, distress, quality of life, well-being, pain, and palliative. We also recognize that the associated areas such as coping, suffering, spiritual, reactions to illnesses such as denial, survivors, caregivers, and staff stress would give a holistic picture to understand the emotional needs of cancer diagnoses.

Additional limits included publication between 2007 and 2018 and all adults (above 18 years). The year 2007 was chosen as there was a review from Mehrotra about psycho-oncology research in India covering publications till 2006.[7] It would be interesting to see the progress from 2007 onward in India. Studies were selected for initial review if they met the following predetermined inclusion criteria: original articles, published in English, adult cancer patients and/or partners or caregivers who resided in India, availability of full-length article, and studies needed to have a psychological component as the principal focus. We manually searched from the references of the relevant articles and also contacted the experts, by correspondence, in the field to access all the articles. Studies published in conference proceedings, commentaries, case studies, discussions, books, book chapters, or research not published in the English language were not included.

Study selection

Titles and abstracts were initially assessed for eligibility. If it was possible to confirm that an article met the inclusion criteria from the abstract alone, the full-text article was retrieved.[8] If it was clear from the abstract that an article was not eligible, it was excluded [Figure 1].

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Figure 1

Overview of the search strategy used to conduct the literature review

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RESULTS

The electronic database searches initially yielded the following results. An approximate of 521 abstracts were then retrieved and critically appraised for the inclusion criteria. Of these, 112 studies met the inclusion criteria. In that, 29 studies were included for the systematic review on the prevalence of psychiatric problems.

The majority of these studies have utilized descriptive methods (85), as contrasting to assessment (8) or intervention (19) research. Despite some variation, the number of descriptive studies per year has increased from 2007 to 2018, especially in 2016 and 2017 with 16 and 21 studies, respectively. While the number of intervention and assessment studies has remained low [Figure 2].

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Figure 2

Number of descriptive, measurement, and intervention studies per year over 12 years

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DISCUSSION AND FUTURE DIRECTIONS

In the current review, there is wide variation in the prevalence rates, for example, depression rates ranged from 4.4% to 89.9% and anxiety ranged from 1.2% to 97.8% of prevalence. This wide range could be due to the heterogeneity in sociodemographic factors in the sample and different tools used for assessment. There are wide variations in the tools used for the study of additional dimensions of emotional distress. The common tool used for assessment was the Hospital Anxiety and Depression Scale in cancer settings. There were variations of the prevalence rates across different types of cancers. Similar is the finding of differing rates in the different stages of cancer and therapies. All of these observations bring to focus, the complexity of emotional reactions to living with cancer.

Epidemiology is an important public health tool to understand the prevalence, patterns, associated factors, and the morbid risk. The examples of linkage of smoking to lung cancer and the role of infection to cervical cancer are good examples of such an approach. As the prevalence, pattern and associations are different in different communities, it is important that Indian studies focus on understanding of the epidemiology of the Indian patients. Two studies illustrate the importance of such studies. In the study by Purkayastha et al. (2017), the introduction of the degree of disability modified the numbers of those identified as having depression from 21.5% to 4%.[14] Similarly, the study by Tandon et al. using a specific tool-like card shorting task for the study of coping methods led to the identification of a new set of coping measures in the Indian population.[40] It is important that epidemiological studies are designed to bring out all of the dimensions of epidemiology. There is a need to identify the sample size, tools for the assessment and evaluation of associated features adequately to get meaningful results.

The relevance and importance of Indian studies is clear from the following reports. Indian studies, by Mehrotra and Chaturvedi et al., have shown that Indian patients with a diagnosis of cancer express distress differently and also utilize different types of supports to cope.[74142]

Mehrotra noted “there are also a few challenges that are rather unique to India and need to be extensively addressed by future researchers”.[7] Chaturvedi mentioned that “India does not have an active society or a group of psychiatrists of mental health professionals who could form an association.”[42] Similarly, Barthakur et al. reported “few survivors reported having received counseling before surgery and during treatment. It was of benefit to them…. However, general concern was that such services are by far and large unavailable and much in need to address softer issues.”[43] Chaturvedi “…. family plays a significant role in each stage of diagnosis and management of chronic illness such as cancer… consideration of Indian cultural beliefs and practices provides a salient example of differences that may impact communication in cancer care.”[41]

India is a plural society in terms of religion, social class, literacy, place of stay, family structure, and all of these have implications for the occurrence of emotional distress following the diagnosis of cancer.[44] It is for this reason, there is a need for Indian studies involving persons from a wide range of backgrounds and from different parts of the country. Recognition of universal nature of the occurrence of emotional distress, in different forms, in all groups of persons diagnosed with cancer and surviving cancer calls for greater attention to both the identification, classification, intervention, and study of association with survival.

There is a positive trend for an increasing number of studies in the past few years. Our review found an increase of publication relating to psycho-oncology from India 2007 to 2018 [Figure 2]. An overall conclusion that can be drawn from the 29 studies is that cancer patients' emotional health is compromised as compared to the normal population. Singh et al. and Bhuroo et al. showed a statistically significant difference between cancer patients and noncancer patients in mental health.[3738]

In contrast to the studies from Western centers, the amount of studies from India is limited and has many limitations. The limitations of the studies conducted in India, to date are:

1. Almost all of the studies have used a screening tool to identify “psychiatric patients.” This is not adequate as screening tools; generally, identify the “at-risk” population and not the diagnosable patients. For diagnosis, there is a need for two-stage study, with the second stage examining the “positive” group to make a clinical diagnosis. In general, the positivity following screening is around 60%, depending on the tool and the cutoff point.[45] In India, the paucity of psychiatrists for second stage diagnosis requires that at least for each center, the sensitivity and specificity of the screening tool should be established. In the presentation, the results should be presented as possible psychiatric cases and not diagnostic groups. Similarly, Fatiregun et al. conducted a two-stage study on breast cancer patients with anxiety disorder found that the cases dropped in two-stage assessment. Initial diagnosable patients were 26.5% after the two-stage it was 18.5% anxiety cases[46]

2. Common emotional problems: The most common categories of symptoms reported are anxiety and depression ranging from 4.4%–97.8% to 1.2%–89.9%, respectively. It is significant that none of the studies have identified new psychological symptoms/syndromes specify to a specific group of persons diagnosed with cancer or the differing way both anxiety and depression are presented. A study by Karthikeyan et al. investigated the prevalence of fatigue during different treatment phase in cancer. The results shows severe fatigue was seen higher among the patients receiving chemotherapy.[31] This study shows the value of thinking beyond the diagnostic syndromes in emotional health. The other common symptoms/complaints such as sleeplessness, cognitive disturbances, sexual difficulties, and spiritual challenges are lost in exploring only the diagnostic syndromes.

   1. Missing to state proportion: Eight of 28 studies have stated the mean score as the results of anxiety and depression, there was no proportion mentioned. This does not give a complete picture of the number of people or proportion having the disorder

   2. Nature of psychiatric disorder: The most common psychiatric disorder in cancer is adjustment disorder. Whereas, current studies have focused on anxiety, depression, panic disorder, delirium, somatoform disorder, and eating disorders. In general, the diagnosis of cancer brings the patients to address alternative decisions about life and experience crisis. It is an existential crisis where patients start thinking on immediate death. Mohandoss and Thavarajah found 0.61% of suicides in cancer patients over 14 years in India.[47] Most of this situation arises because of the myth and stigma which is built around this disease and due to the lack of the right information about the disease

   3. Severity of Symptoms: Mental health assessment is always presented with the degree of severity of the disorder. In the current review, only nine studies have stated the results with the degree of the psychiatric disorder. Purkayastha et al. states that in breast cancer patients 4% of them had severe depression.[14] Similarly, other studies shows 3.4% and 8% severe depression in cancer patients.[1230] Abhishekh et al. examined with the lung cancer on depression where 2% of them had moderate depression.[34] However, Chittem et al. (2012) examined with the patient's awareness of the cancer diagnoses, a patient with unaware of the diagnoses had 26.97% and 30.34% of moderate-to-severe anxiety and depression.[20] However, the patient was aware of the diagnoses showed a lesser degree of anxiety and depression, i.e., 11.26% and 18.54%, respectively.[20] Ghoshal et al. found newly diagnosed cancer patients having higher anxiety and loss of sense of well-being, with 50% severe symptoms and 50% with moderate-to-severe depression.[29] Whereas, Prakash Saxena et al. reported 5% with severe anxiety and Mohite et al. stated 24% had a severe level of anxiety.[3036] Similarly, a study on advanced cancer patient reported 18.8% had high death anxiety,[19] and a study reported 23% of them having score moderate-to-severe in HADS.[35] Through these data, we can understand only a small percentage people show a severe degree of distress

   4. In the studies under review, the most common tool was used on quality of life. Additional tools such as coping scale, resilience scale, posttraumatic growth scale, spirituality scale, burden scale, standardized disability scale, which could have given a greater understanding of the dimensions and relationships of psychological distress have not been utilized. Future studies should include these dimensions of epidemiology

   5. Sociodemographic features: The common features reported are age, stage, type, gender, and socioeconomic information in many studies, but there is inconsistency. Most of them did not mention on which time point of the disease they conducted the study. This is the major limitations in the studies because it does not allow us to understand at which point it is most challenging to cope with the illness. Three studies have given details of the time point of the study; anxiety in initial cycle of chemotherapy cycle and duration of diagnosis has shown lower level of anxiety compared to later stage,[37] neo-adjuvant chemotherapy receiving patients showing higher depression in nonresponder[22] and finally, anxiety and depression in women with breast cancer undergoing surgical treatment were not significantly associated with stigma[15]

   6. The other striking aspects of the studies are the lack of a standardized way of categorizing the sociodemographic and other risk factors. Like using the Kuppuswamy scale to assess the socioeconomic status.[48] It is also to be noted that the numbers are too small in most of the studies to group them across the various sociodemographic groups.

It is significant that only one of the seven purposes of an epidemiological survey have been fulfilled by the majority of the studies reviewed in this paper. The identification of etiological factors has occurred to a very limited level. No reports are there identifying new syndromes or differing presentation of the known clinical syndromes. This limitation of the studies is important as preventive, promotive efforts can only come from such an identification etiological associations and possible causation. All the studies have used the standard diagnostic criteria and the wider range of syndromal description and the identification of new syndromes or variations in the presentation has not occurred. This is especially relevant as the degree of distress, the manifestation of distress does not always follow the clinical diagnostic criteria. Purkayastha et al. overall depression in breast cancer patients was 21.5% while in the category of severe depression is 4%, there is a 20% variation in the degree of depression. Studies seems to have decided on what to find and found them (the much talked about “suitcase syndrome” – you find what you have put into the suitcase). Similarly, as most of the studies are one time studies, the historical trends and calculation of “morbid risk” has not been possible.

CONCLUSION

Emotional health care is an important part of care of persons living with cancer. There is a need to understand the emotional impact of the diagnosis of cancer in the persons and their caregivers. Increasing information can result in greater recognition and appropriate interventions by care providers. The recent increasing trend in the study of emotional health aspects of living with cancer is welcome. The wide prevalence of emotional distress calls for greater understanding of the factors predisposing the individual as well as factors that protect individuals. Such an attempt will allow for greater attention to the vulnerable groups for interventions as well as to develop population group-specific interventions. Future studies should use the two-stage design; quantification of the severity of the disorder; a collection of sociodemographic factors in a standardized manner; adequate sample size to bring out differences across subgroups; and use additional tools such as coping, posttraumatic growth, resilience, burden, and spirituality. This is both a challenge for future studies and an opportunity to advance knowledge and services in this field.