Support Care Cancer (2011) 19:239250 DOI 10.

1007/s00520-009-0810-4

ORIGINAL ARTICLE

Gender, age and surgery as a treatment modality leads to higher distress in patients with cancer
Bejoy C. Thomas & V. NandaMohan & Madhvan K. Nair & Manoj Pandey

Received: 19 May 2009 / Accepted: 23 December 2009 / Published online: 23 February 2010 # Springer-Verlag 2010

Abstract Introduction Distress has been defined as a multidimensional construct that extends along a continuum, ranging from common normal feelings of vulnerability, sadness and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation and existential and spiritual crisis. Several studies have pointed out the need to screen for distress in the cancer. Emotional distress has been found as a core indicator of a patients health and well-being and has installed it as the sixth vital sign. The aim of the present study was to identify the predictors of distress in cancer patients.
This study is approved by institute ethics committee. B. C. Thomas Department of Psychosocial Oncology, Tom Baker Cancer Centre, Calgary, AB, Canada B. C. Thomas : V. NandaMohan Department of Futures Studies, University of Kerala, Trivandrum, Kerala, India M. K. Nair S.U.T. Institute of Oncology, Sree Utharadom Thirunal Hospital, Trivandrum, Kerala, India M. Pandey (*) Department of Surgical Oncology, Institute of Medical Sciences, Banaras Hindu University, 221 005 Varanasi, India e-mail: manojpandey@vsnl.com B. C. Thomas : M. Pandey Division of Surgical Oncology, Regional Cancer Centre, Trivandrum, Kerala, India M. K. Nair Division of Radiation Oncology, Regional Cancer Centre, Trivandrum, Kerala, India

Patients and methods For the present study, a total of 760 patients with cancer in a tertiary cancer centre were assessed using the Distress Inventory for Cancer Version 2 (DIC V2). A multivariate logistic regression was carried out to identify the predictors of distress and six subscales. Results Female patients under the age of 44 years scheduled to undergo surgery or those who had undergone surgery predicted significantly higher levels of overall distress. Composite disease stage other than stage IV metastatic disease and being a daily wage employee predicted significantly lower levels of overall distress. Discussion Higher distress among women undergoing surgery could imply distress associated with significant cosmetic disfigurement and feeling of loss of womanhood especially in those with breast or cervix cancer. Conclusion The study once again demonstrate gender and age differences in distress and also highlights the importance of knowing that cancer is confined to one organ and has not spread. Keywords Cancer . Distress . Surgery . Social isolation . Patientpractitioner communication

Introduction The concept of psychological distress in relation to cancer is not new. Although patientpractitioner communication has improved over the past two decades [1], anxiety and depression associated with the diagnosis of cancer and requiring therapeutic intervention is often missed [26]. One of the major obstacles may be unwillingness of patients to discuss their feelings freely with physicians because being labelled psychological, psychiatric and emotional can be as stigmatising as the word cancer [7].

240

Support Care Cancer (2011) 19:239250

Another obstacle could be that the oncologists with little or no training in psychiatry may avoid questioning patients about their emotional state or are too rushed during increasingly brief clinical visits to enquire about psychological concerns of their patients [7]. Psychological distress in cancer has received more attention in recent years as new cancer treatments are being developed and cancer survival rates have improved [812]. Besides, patients have become more willing to accept higher risks, trading off potential deficits, for a chance to live longer [13]. However, as the survival rates increase, several other problems or issues begin to surface and current trends in psycho-oncology research are an attempt to define the types of stress and coping mechanisms being used in order to identify predictors of psychological distress [14]. Unhappiness, hopelessness and worry during certain periods of the illness cannot be altogether avoided; indeed for many patients, a limited period of emotional distress is probably a prerequisite to realistic long-term adjustment [15]this has been described as essential distress. It has also been reported that patients may experience psychological distress at diagnosis, during treatment, or afterwards over a long period of time as they adjust to life changes [13]. Salander [16] pointed out that being diseased, to most patients, implied that life's order was replaced by disorder, and to some a loss of basic trust, and selfconfidence, highlighting the need for specific intervention for the patient's attitudes, belief-system and mood disorders [14, 17, 18]. Patients with head and neck cancer have been reported to be more prone to psycho-social problems and social support was found to influence the patients ability to adapt to the illness and its treatment [19]. The buffering hypothesis suggests that the social support may shield cancer patients from the effects of life stress on their emotional distress [20], and lack or loss of social support has been proposed to affect the onset and course of cancer [21]. The absence of a current social network has been proposed to lead to a higher incidence of cancer [22] and to a more rapid course of illness [23, 24] in this group. Medical-related distress [25], perceived social/familial support, uncertainty in the context of medical distress [26], emotional distress [6, 27, 28] and spiritual distress [29, 30] have also been studied. All the above dimensions of distress have been studied either in isolation or as a cluster. It is also clear that cancer has been termed as a complex disease as it affects not only the patient but also their family and is the basis of significant change both physically as well as emotionally. The National Comprehensive Cancer Network brought forward guidelines to assure that all distress are recognised and treated [7] and recommended screening for distress. In Canada, the Canadian Strategy for Cancer Control went further and installed distress as the sixth vital sign [31].

Most of these studies are from the developed countries, and the literature from developing and underdeveloped countries is sparse. From India, apart from few earlier studies by the authors, there are virtually no studies on distress in cancer. It would, therefore, be an obvious step forward to identify predictors of distress in Indian cancer patients and to explore the perceived barriers to resource utilization in a country whose social fabric is entirely different from the west. The Distress Inventory for Cancer (DIC) since its first publication [32] has been substantially revised [3336]. The data from a large sample of patients that had responded to the DIC version 2 were the basis, on which the present study is reported. The study was approved by the institutions research board and ethics committee of Regional Cancer Centre, Trivandrum, India.

Patients and methods Tool DIC 2 is a 33-item questionnaire that measures the global distress in cancer patients. It also provides six subscale scores, i.e. emotional distress, spiritual distress, social distress, medical distress, activity of daily living and familial distress [36]. Internal consistency of the tool ranges from 0.720.87 (n =723). An electronic version of the tool and a database-rescoring programme of the DIC 2 are also available from the authors on request. Patients A total of 760 patients, over a period of 3 years (2002 2005), were studied after obtaining a written informed consent. A method of convenient sampling was used. Socio-demographic information was provided by the respondents, and disease staging and treatment information was extracted from the medical records [36]. Of these, 4.8% had answered less than 80% of the questions and, hence, were excluded from the analysis [36]. India is a socially and culturally diverse country, with over 26 languages, numerous religions and diverse social, cultural and religious practices; hence, this sample cannot be considered representative sample for the rest of the country. Analysis A detailed search of literature identified three groups of variables that may influence distress: these were demographic (including social and personal), disease-related and treatment-related factors. The univariate analysis (analysis of varianceANOVA) with Bonferroni correction to

Support Care Cancer (2011) 19:239250

241

control for multiple p value testing was used to identify the significant variables that were used in multinomial logistic regression models. Multinomial logistic regression was used to identify significant independent predictors of the total distress score. The 33.33rd and 66.66th percentiles were used to categorise the total distress scores into low, middle and high. The low distress was used as referent, and hazard ratios (HR) with 95% confidence interval were calculated for middle- and high-distress tertiles.

with bold emphasis were significant on both ANOVA and multivariate analysis. Predictors of emotional distress Female patients (HR=3.4; 95% CI=1.67.2), less than 44 or between 44 and 57 years of age (HR=2.1, 95% CI= 1.113.94; HR=1.7, 95% CI=1.062.77, respectively), of low- or middle-income category (HR=3.1, 95% CI=1.6 5.8; HR =2.05, CI=1.13.8, respectively), interviewed within 6 months of the diagnosis (HR=1.77, 95% CI= 1.112.8), and the patients having undergone or were to undergo surgery (HR=2.319, 95% CI=1.433.73) had significantly higher hazards of being emotional distress (Table 3, Fig. 1). However, having a spouse employed as a daily wager (those paid for their jobs on daily basis; HR= 0.34; 95% CI=0.10.7), having no unmarried children (i.e. all married; HR=0.5; 95% CI=0.20.9) versus all children being unmarried, and those with stages I, II or III (HR= 0.19, 95% CI=0.0070.49; HR=0.30, 95% CI=0.130.98; and HR=0.44, 95% CI=0.20.95, respectively) disease, predicted significantly lower hazards of emotional distress (Table 3, Fig. 2). Predictors of social distress

Results Patient demography is provided in Table 1. The corrected p value for the testing for significance of 26 variables was <0.002. Variables that were found significant in the univariate analysis were included in the multivariate logistic regression analysis. Table 2 describes the variables that were found to be significant for total distress and subscales. The check marked cells were significant on univariate analysis by ANOVA while check marked cells

Table 1 Showing the patient demographics (N =723) Variable Gender Site Grouping Male Female Breast Head and neck Other sites <43 4357 57 Never married Married Divorced Widowed Primary Secondary College Housewife Unemployed Regular income Daily wages Low Moderate High Hindu Muslim Christian Number (%) 357 366 224 370 129 244 247 232 64 561 22 76 241 343 139 231 43 175 260 324 222 177 425 110 188 (49.4) (50.6) (31) (51.2) (17.8) (33.7) (34.2) (32.1) (8.9) (77.6) (3) (10.5) (33.33) (47.44) (19.23) (31.95) (5.95) (24.21) (35.96) (44.81) (30.71) (24.48) (58.72) (15.21) (26)

Age

Marital status

Hindu patients (HR=2.2; 95%CI=1.14.2) and those with primary or secondary education (HR=2.9, 95%CI=1.3 6.4; and HR=2.6, 95%CI=1.25.4, respectively) were found to have statistically significant higher hazards of social distress (Table 4, Fig. 1). Being female (HR=0.3; 95%CI=0.10.7) and a housewife (HR=0.6; 95%CI=0.3 0.9) compared to those with a fulltime employed and being diagnosed with a cancer other than breast cancer (HR=0.3, 95%CI=0.10.6) compared to patients with head and neck cancers predicted significantly lower hazards of social distress (Table 4, Fig. 2). Predictors of medical distress Patients with breast cancer (HR=2.9; 95%CI=1.65.3) compared to those with head and neck cancer predicted significantly higher hazards of medical distress (Table 5, Fig. 1). However, those who had completed or were on active treatment (HR=0.4, 95%CI=0.20.6; and HR=0.4, 95%CI=0.20.7, respectively) predicted significantly lower hazards of medical distress (Table 5, Fig. 2). Predictors of spiritual distress Patients with stage III disease (HR=4.7; 95%CI=1.911.7) compared to those with stage IV disease and having undergone or those scheduled to undergo surgery (HR=

Education

Occupation

Income

Religion

242

Support Care Cancer (2011) 19:239250

Table 2 Variables short listed by the univariate analysis for multivariate analysisDIC2 scale and subscale (Bonferroni corrected p value= <0.002) ANOVA variables Determinants of distress: factors short listed for multivariate analysis Emotional Demographical variables Gender Age Income category Religion Patient Education Spouse Education Occupation Spouse occupation Number of unmarried children Proximity to the treatment centre Disease-related variables Cancer Group Pain Symptom duration Tumour staging Nodal staging Metastatic staging Composite staging Months between registration and interview Treatment-related variables Previous Treatment Treatment Modality Completed/due for chemotherapy Completed/due for surgery Completed/due for radiotherapy Treatment status at time of interview Social Spiritual Medical ADL Familial DIC V2

Check mark significant in the univariate analysis (corrected p =0.02), Check mark with bold emphasis Multivariate analysis significant at the 0.05 by the least

1.9, 95% CI=1.23), predicted significantly higher hazards of spiritual distress (Table 6, Fig. 1). However, having a T2 or T3 disease (HR=0.3, 95%CI=0.10.9; and HR=0.4, 95%CI=0.10.98, respectively) and absence of metastasis (HR=0.003; 95%CI=0.00.3) predicted significantly lower hazards of spiritual distress (Table 6, Fig. 2). Predictors of distress related to activities of daily living Patients or their spouses with primary education (HR=2, 95%CI=1.03.9; and HR=2.1, 95%CI=1.04.4, respectively); those diagnosed with a cancer other than breast or head neck (HR=3.6, 95%CI=1.77.9) and having undergone or were to undergo surgery (HR=1.7, 95% CI= 1.1-2.7) predicted significantly higher hazards of activities of daily-living-related distress (Table 7, Fig. 1).

However, duration of symptoms lesser than 3 months (HR = 0.5; 95%CI = 0.30.8), and those with stage I disease (HR=0.2; 95%CI=0.00.6), predicted significantly lower hazards of activities of daily-living-related distress (Table 7, Fig. 2). Predictors of familial distress Female patients (HR=4.7; 95% CI=1.514.8) less than 44 years of age (HR=2.3; 95% CI=1.14.9), patients who have had prior treatment (HR=2.1; 95% CI=1.23.9) and patients who have undergone or were to undergo surgery (HR=2.3, 95% CI=1.34.1) predicted significantly higher hazards of familial distress (Table 8, Fig. 1), while lower hazards for familial distress were observed for male patients whose spouse were housewives (HR=0.3, 95%CI=0.10.8;

Support Care Cancer (2011) 19:239250

243

Table 3 Predictors of emotional distress: table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Gender Age Grouping Female Male <44 years 4457 years >57 years Low Middle High Housewife Daily wage/unemployed Regular income/supported N/A Housewife Daily wage/unemployed Regular income/supported N/A None Some All Not specified I II III IV <6 months >6 months Yes No High HR (CI) 3.407* (1.607.22) Referent 2.1* (1.113.94) 1.283 (0.752.17) Referent 3.057* (1.625.75) 2.058* (1.103.83) Referent 0.586 (0.281.22) 0.371* (0.200.69) Referent 0.59 (0.291.18) 0.85 (0.421.70) 0.349* (0.160.74) Referent 0.684 (0.301.56) 0.503* (0.280.90) 1.104 (0.602.02) Referent 0.39 (0.121.25) 0.196* (0.010.49) 0.305* (0.130.68) 0.444* (0.200.95) Referent 1.766* (1.112.80) Referent 2.319* (1.433.73) Referent Middle HR (CI) 1.646 (0.823.27) Referent 2.59* (1.434.69) 1.717* (1.062.77) Referent 1.282 (0.732.23) 1.141 (0.661.95) Referent 0.784 (0.381.59) 0.504* (0.290.86) Referent 0.812 (0.411.58) 0.648 (0.341.23) 0.614 (0.311.21) Referent 0.764 (0.341.69) 0.789 (0.461.35) 1.658 (0.942.90) Referent 0.68 (0.212.13) 0.534 (0.221.29) 0.758 (0.331.71) 0.75 (0.341.64) Referent 1.789* (1.172.73) Referent 1.064 (0.681.66) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent

Income category

Patient occupation

Spouse occupation

Number of unmarried children

Composite staging

Time between registration and interview Completed/due for surgery?

and HR=0.4, 95%CI=0.20.9, respectively), patients who were daily wagers or were unemployed (HR=0.2, 95% CI= 0.0060.3), having no unmarried children (i.e. all married; HR=0.4; 95% CI=0.20.7), patients with a diagnosis of breast cancer (HR=0.2; 95% CI=0.010.6) or a cancer other than a head and neck cancer (HR=0.4; 95% CI=0.2 0.99) and those patients who had completed active treatment (HR=0.3, 95%CI=0.20.7; Table 8, Fig. 2). Predictors of overall distress Female patients (HR=3.6; 95% CI=1.77.8), under the age of 44 years (HR=2.1; 95% CI=1.23.6), patients with low or middle income (HR=2.2, 95% CI=1.24.1; HR=2.2, 95% CI=1.23.9, respectively) and having undergone or were scheduled to undergo surgery (HR=2.5, 95% CI=1.6 4.03) predicted significantly higher hazards of overall distress (Table 9, Fig. 1). However, patients who were

daily wagers or were unemployed (HR=0.4, 95% CI=0.2 0.8) and those with early disease (Stage IHR=0.2, 95% CI=0.010.6; Stage IIHR=0.2, 95% CI=0.010.6, respectively) predicted significantly lower hazards of overall distress (Table 9, Fig. 2).

Discussion The results of the present study shows that gender, age, lower income and surgery as the treatment modality increases the risk of developing distress in cancer patients. It is clear that a host of different variables predict higher or lower hazard ratios of physical, emotional or spiritual distress in cancer patients. This does provide us with some insight on patient demographic clusters that are at greater risk for higher distress and its subscales [6, 11, 12, 27, 28, 3740].

244 Fig. 1 Graph showing predictors of higher levels of Distress (scale and subscale scores). Age under 57 years, female and undergoing surgery predicted higher overall distress, while having surgery predicted higher distress for familial, spiritual, emotional distress and activity of daily living
<6 months between registration and interview

Support Care Cancer (2011) 19:239250

44-57 years

Spouse is daily wage earner/ Unemployed

Emotion <44 years Female

DIC V2

Had previous treatment

Social

Familial

Education: Primary & Secondary

ADL

Had surgery

Spiritual

Medical Spouse with primary education Breast cancer Stage III disease

Spouse as Housewife Cancer other than Head and Neck

Daily wage/ Unemployed

Stage II disease

Some married children

Familial

Spouse is daily wage earner/ Unemployed

DIC V2 Stage III disease

House wife

Social

No active treatment Female

All married children

Emotional

Cancers not of the Breast or Head and Neck Medical

Stage I disease

Spiritual

T2

On active treatment <3 months symptom duration

ADL

M0

T3

Fig. 2 Graph showing predictors of lower levels of Distress (scale and subscale scores). Daily wagers and those with early stages I and II disease had lower risk of overall distress, while lower risk of overall spiritual distress was seen only with disease-related parameters. A lower family distress was observed in head neck cancer patients

Support Care Cancer (2011) 19:239250

245

Table 4 Predictors of social and medical distress table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Gender Religion Grouping Female Male Christian Hindu Muslim Primary Secondary Collegiate Housewife Daily wage/unemployed Regular income/supported Breast Other Head and neck High HR (CI) 0.334* (0.140.77) Referent 0.773 (0.351.68) 2.180* (1.124.24) Referent 2.858* (1.276.42) 2.556* (1.205.41) Referent 1.077 (0.482.40) 1.059 (0.591.88) Referent 0.848 (0.401.77) 0.305* (0.150.62) Referent Middle HR (CI) 1.628 (0.942.80) Referent 0.643 (0.371.09) 1.085 (0.671.74) Referent 1.372 (0.792.36) 1.073 (0.661.74) Referent 0.557* (0.330.93) 0.869 (0.531.41) Referent 0.747 (0.451.23) 0.908 (0.571.44) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent

Patient education

Patient occupation

Cancer group

Although literature on the effect of gender with specific reference to pre-clinical emotional distress is sparse (i.e. emotional distress that is not defined as either anxiety or depression), gender differences favouring men rather than women have been established in general psychological distress [41]. Major psychopathology (depression being more common in women) [42, 43], emotional perception of disease [44] and negative and positive moods that may be derived from biological, personality and socio-cultural influences [45] too show gender difference. Other researchers too have observed gender differences on several dimensions of social adjustment, psychological distress, medical variables, fear of recurrence, future diagnostic tests and in particular the future uncertainties [46, 47]. Higher distress is also noted among caregivers [41, 44, 4648]. However, compared to female patients, male cancer patients faced greater social distress in the present study. This probably reflects the social fabric of the Indian society where the male members usually interact with the society and may be the sole wage earner. The diagnosis of a cancer and its subsequent treatment may cause male patients to

experience substantial inhibitions in their interactions with the society-at-large either due to treatment morbidity (disfigurement, speech disorders, etc.), or because of stigma associated with cancer, frequent visits to the treatment centre can also lead to financial problems and can be a surrogate for the same. On the contrary, the women in Indian society may have more social and family support that is reflected in lower distress in this group. There are no data on distress in cancer from Indian subcontinent and very little from Southeast Asia; hence, these are important first results. Nearly a five times increase in familial distress for women could be indicative of new roles in the management of home and the family. These issues being reflected in the items of the subscaleunable to manage the home affairs (item 3 in the family-specific distress subscale FSD3), treatment schedule as a hindrance to spouses routine activities (FSD4), etc. It is well established that emotional distress is greater amongst young adult cancer patients [49, 50] and varies from unmet needs in physical, economic and medical domains [51], leading to a need to make hard choices

Table 5 Predictors of medical distress table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Cancer group Grouping Breast General Head and neck No active treatment On active treatment Yet to begin active treatment High HR (CI) 1.480 (0.962.26) 0.517 (0.241.11) Referent 0.395* (0.240.63) 0.409* (0.230.72) Referent Middle HR (CI) 2.932* (1.625.28) 2.847* (1.216.69) Referent 1.070 (0.542.11) 1.002 (0.462.15) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent

Treatment status at time of interview

246

Support Care Cancer (2011) 19:239250

Table 6 Predictors of spiritual distress: table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Spouse occupation Grouping N/A Housewife Daily wage/unemployed Regular income/supported Tx T1 T2 T3 T4 Mx M0 M1 Not specified I II III IV Yes No High HR (CI) 0.484* (0.250.91) 0.617 (0.321.18) 0.908 (0.392.07) Referent 0.190* (0.010.56) 0.413 (0.111.49) 0.475 (0.171.31) 0.349 (0.120.98) Referent 0.009 (0.011.01) 0.003* (0.000.32) Referent 2.490 (0.728.51) 2.282 (0.559.42) 1.611 (0.554.69) 4.707* (1.8911.7) Referent 1.895* (1.193.01) Referent Middle HR (CI) 0.599 (0.291.22) 1.065 (0.502.25) 0.926 (0.372.29) Referent 0.198* (0.000.63) 0.287 (0.0071.16) 0.323* (0.110.94) 0.249* (0.010.76) Referent 0.254 (0.0023.11) 0.006* (0.010.75) Referent 1.571 (0.455.43) 1.475 (0.326.62) 1.273 (0.433.76) 2.338 (0.915.98) Referent 1.754* (1.032.97) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent

Tumour staging

Metastatic staging

Composite staging

Completed/due for surgery?

N/A not applicable

Table 7 Predictors of activities of daily living : table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Patient education Grouping Primary Secondary Collegiate N/A Primary Secondary Collegiate Breast General Head and neck Not specified <3 months 3 months Not specified I II III IV Yes No High HR (CI) 1.99* (1.013.89) 1.058 (0.591.89) Referent 1.286 (0.642.57) 2.116* (1.004.44) 1.268 (0.652.45) Referent 1.211 (0.741.97) 3.624* (1.667.89) Referent 0.547 (0.31.006) 0.502* (0.340.75) Referent 0.300* (0.100.87) 0.210* (0.010.55) 0.556 (0.251.22) 0.587 (0.271.24) Referent 1.708* (1.082.67) Referent Middle HR (CI) 1.339 (0.652.73) 0.943 (0.511.74) Referent 1.590 (0.763.31) 2.332* (1.045.19) 1.553 (0.773.13) Referent 1.815* (1.112.95) 1.698 (0.694.16) Referent 0.943 (0.501.77) 0.612* (0.390.95) Referent 1.050 (0.147.64) 1.183 (0.226.32) 3.303 (0.6915.60) 4.505 (0.9820.64) Referent 0.892 (0.541.45) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent

Spouse education

Cancer group

Duration of symptoms

Composite staging

Underwent/undergoing chemotherapy

N/A not applicable

Support Care Cancer (2011) 19:239250

247

Table 8 Predictors of familial distress: table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Gender Age Grouping Female Male <44 years 4457 years 57 years Housewife Daily wage/unemployed Regular income/supported Housewife Daily wage/unemployed Regular income/supported N/A None Some All Breast General Head and neck Yes Yes No No active treatment On active treatment To begin treatment High HR (CI) 4.728* (1.5114.75) Referent 2.317* (1.14.88) 1.016 (0.551.86) Referent 0.327* (0.130.84) 0.145* (0.0060.32) Referent 0.414* (0.200.88) 0.449* (0.220.92) Referent 0.266* (0.010.90) 0.346* (0.180.67) 0.611 (0.331.15) Referent 0.437 (0.181.1) 0.438* (0.190.99) Referent 2.13* (1.163.9) Referent 2.321* (1.334.05) Referent 0.336* (0.160.71) 0.652 (0.281.53) Referent Middle HR (CI) 2.926 (0.978.85) Referent 1.366 (0.682.76) 1.075 (0.641.82) Referent 0.615 (0.241.55) 0.585 (0.331.04) Referent 0.711 (0.351.43) 0.523 (0.251.09) Referent 0.548 (0.171.77) 0.648 (0.361.16) 0.481* (0.260.88) Referent 0.246* (0.010.63) 0.371* (0.170.82) Referent 2.304* (1.284.14) Referent 1.34 (0.792.26) Referent 0.489 (0.231.04) 0.939 (0.392.23) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent

Patient occupation

Spouse occupation

Number of unmarried children

Cancer group

Previous treatment Underwent/undergoing surgery Treatment status at time of interview

N/A not applicable

between treatment costs or livelihood issues. Younger married patients also imply greater familial responsibilities and financial commitments like having greater number of dependent family members than independent ones (e.g. in addition to offspring, own parents, younger siblings, etc.), significant life concerns (e.g. education loans, mortgage), etc. In the midst of all this, a diagnosis of cancer creates havoc to the relatively fragile frame of life that they would have built. Young adults may also have to live longer with their disease and its impacts. Older patients, on the other hand, may have accomplished several of lifes critical milestones, and remaining responsibilities may be few. Another intervening factor could be the role played by personal life experiences, coping strategies and emotional maturity that are accumulated overtime as one grows. Besides, older adults would be more likely to have offspring who are themselves independent and married and could even partly support them financially. Surgery may imply loss of a body part or some significant change in the individuals features like visible

facial disfigurement in a head and neck cancer or a nonvisible bag after anterior resection for colorectal cancer or perhaps even a change in body image in the case of a breast, penile, cervix and/or testicular cancers[37, 5254]. Other modalities of cancer treatment are non-invasive; therefore, treatment side effects, though intense during the treatment period, are relatively temporary and may not cause significant permanent changes in the body. Treatment of the cancer with curative intent could be radical and treatment decision-making on the part of the patient is crucial. This highlight needs for supportive services for patients particularly those who have to undergo invasive procedures so as to come to terms not only with physical disabilities but also with psychological morbidities. In theory, there is association between response expectancies and post-treatment outcomes [53, 5557]. On the other hand, radiotherapy is considered non-invasive; therefore, treatment side effects, though intense during the treatment period, are relatively temporary and may not cause significant physical changes [52, 58, 59].

248

Support Care Cancer (2011) 19:239250

Table 9 Predictors of overall distress: table showing hazard ratio (HR) and 95% confidence interval (CI) for high and moderate distress compared to low distress Variable Gender Age Grouping Female Male <44 years 4457 years 57 years Low Middle High Housewife Daily wage/unemployed Regular income/supported Not specified I II III IV Yes No High HR (CI) 3.622* (1.687.79) Referent 2.108* (1.243.57) 1.383 (0.832.28) Referent 2.233* (1.224.06) 2.150* (1.183.88) Referent 0.589 (0.301.14) 0.433* (0.240.78) Referent 0.491 (0.141.67) 0.225* (0.010.63) 0.234* (0.010.59) 0.654 (0.301.39) Referent 2.550* (1.614.03) Referent Middle HR (CI) 1.621 (0.783.35) Referent 1.891* (1.133.15) 1.657* (1.042.62) Referent 1.356 (0.792.32) 1.29 (0.752.19) Referent 0.801 (0.411.54) 0.549* (0.320.92) Referent 0.571 (0.181.74) 0.477 (0.181.26) 0.589 (0.241.40) 0.868 (0.411.81) Referent 1.055 (0.681.62) Referent Low HR (CI) Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent Referent

Income category

Patient occupation

Composite staging

Underwent/undergoing surgery

To make cancer care available to those from the lower economic strata, particularly in developing countries, treatment costs are subsidised in India. Though these subsidised costs take care of several in-hospital expenses like surgery, radiation and laboratory fees, they do not cover travel, accommodation, medicine, food expenses and other non-hospital expenditures. These out-of-pocket expenses are significant [6064] as they may influence the patients prioritising the treatment and follow-up even in developed countries where health care is taken cared of by the government. Higher levels of distress, therefore, may result out of the dilemma between choosing to use available financial resources for needs of the family or for purchase of supportive treatment or transportation to the hospital for the required follow-up and perhaps reflect social and cultural differences. Patients with advanced disease at presentation usually receive an aggressive treatment which entails substantial physiological morbidity and significantly impacts the patients distress levels [6567]. Barnett [68] in his study on 106 advanced cancer patients noted that the majority of participants (78%) demonstrated a good understanding of their diagnosis and were consistent with their information preference. He concluded that though the patients with advanced cancer had a good understanding of their diagnosis, many do not fully understand their prognosis. Although patients with deteriorating health were more likely to be psychologically distressed,

awareness of prognosis did not itself cause depression. In the present study, interviewed patients have reported bargaining with God for disease-free survival so as to fulfil his wishes and commands in their lives. Such emotions may, therefore, play on the levels on their spiritual distress causing it to increase. The present study highlights the importance of identifying the predictors of distress in cancer patients; however, use of tertiles instead of cut-off for significant distress limits the clinical use of present results.

Conclusions The present paper elucidates that distress in cancer patients is a complicated phenomenon. A step forward may be to utilise just one of the subscales perhaps the overall distress scores in a logistic model that controls for interaction factors amongst the variables. This may result in a screening device that works as an early-warning system based on patient profiles.
Acknowledgement This work comprises part of the doctoral (Applied Science) work of Bejoy Cherian Thomas, Modeling Distress in Cancer patients: A Psycho-Futuristic Approach submitted to the University of Kerala, India, in August, 2005. Bejoy Cherian Thomas was awarded runner-up position for Hiroomi Kawano New Investigators Award, for part of this work at the 6th World Congress of Psychooncology, Banff, Alberta, Canada, 2003.

Support Care Cancer (2011) 19:239250 The authors wish to acknowledge the support of Dr. B. Rajan, Director, Dr. K. Ramadas, Additional Professor, Dr. Rajneesh, Assistant Professor, Division of Radiation Oncology, and Dr. B. M. Hussain, Assistant Professor, Division of Medical Oncology, Regional Cancer Centre, Trivandrum, for their help in this study. Approvals The study was approved by the institutional review board of Regional Cancer Centre, Trivandrum and the Institute Ethics committee.

249 15. Kelly C, Ghazi F, Caldwell K (2002) Psychological distress of cancer and clinical trial participation: a review of the literature. Eur J Cancer Care (Engl ) 11:615 16. Salander P (2000) Using beliefs and magical thinking to fight cancer distress-a case study. Psychooncology 9:4043 17. Epping-Jordan JE, Compas BE, Osowiecki DM, Oppedisano G, Gerhardt C, Primo K, Krag DN (1999) Psychological adjustment in breast cancer: processes of emotional distress. Health Psychol 18:315326 18. Mehta P, Rodrigue J, Nejame C, Gaa R, Wingard JR (2000) Acquiescence to adjunctive experimental therapies may relate to psychological distress: pilot data from a bone marrow transplant center. Bone Marrow Transplant 25:673676 19. de Leeuw L Jr, de Graeff GA, Ros WJ, Hordijk GJ, Blijham GH, Winnubst JA (2000) Negative and positive influences of social support on depression in patients with head and neck cancer: a prospective study. Psychooncology 9:2028 20. Koopman C, Hermanson K, Diamond S, Angell K, Spiegel D (1998) Social support, life stress, pain and emotional adjustment to advanced breast cancer. Psychooncology 7:101111 21. Sklar LS, Anisman H (1981) Stress and cancer. Psychol Bull 89:369406 22. Thomas CB, Duszynski KR (1974) Closeness to parents and the family constellation in a prospective study of five disease states: suicide, mental illness, malignant tumor, hypertension and coronary heart disease. Johns Hopkins Med J 134:251270 23. Worden JW, Weisman AD (1975) Psychosocial components of lagtime in cancer diagnosis. J Psychosom Res 19:6979 24. Reynolds P, Kaplan GA (1990) Social connections and risk for cancer: prospective evidence from the Alameda County Study. Behav Med 16:101110 25. Roberge C, Tran M, Massoud C, Poiree B, Duval N, Damecour E, Frout D, Malvy D, Joly F, Lebailly P et al (2000) Quality of life and home enteral tube feeding: a French prospective study in patients with head and neck or oesophageal cancer. Br J Cancer 82:263269 26. Neville K (1998) The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. J Pediatr Oncol Nurs 15:3746 27. Bultz BD, Carlson LE (2006) Emotional distress: the sixth vital signfuture directions in cancer care. Psychooncology 15:9395 28. Carlson LE, Bultz BD (2004) Efficacy and medical cost offset of psychosocial interventions in cancer care: making the case for economic analyses. Psychooncology 13:837849 29. Kristeller JL, Zumbrun CS, Schilling RF (1999) 'I would if I could': how oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology 8:451458 30. Russak MS, Lederberg M, Fitchett G (1999) Special Issue: Spiritual and religious beliefs and coping with cancer. Psychooncology 8:375466 31. Rebalance Focus Action Group (2005) A position paper: screening key indicators in cancer patientspain as a 5th vital sign and emotional distress as a 6th vital sign. Can Strategy Cancer Control Bull 7(Supplement):4 32. Thomas BC, Mohan VN, Thomas I, Pandey M (2002) Development of a distress inventory for cancer: preliminary results. J Postgrad Med 48:1620 33. Pandey M, Thomas BC, Ramdas K, Nandamohan V (2006) Factors influencing distress in Indian cancer patients. Psychooncology 15:547550 34. Pandey M, Devi N, Thomas BC, Vinod KS, Krishnan R, Ramdas K (2007) Distress overlaps with anxiety and depression in patients with head and neck cancer. Psychooncology 16:582586 35. Pandey M, Sarita GP, Devi N, Thomas BC, Hussain BM, Krishnan R (2006) Distress, anxiety, and depression in cancer patients undergoing chemotherapy. World J Surg Oncol 4:68

Competing interests The authors declare that there are no competing interests.

References
1. Rodin G, Mackay JA, Zimmermann C, Mayer C, Howell D, Katz M, Sussman J, Brouwers M (2009) Clinicianpatient communication: a systematic review. Support Care Cancer 17:627644 2. Fallowfield L, Ratcliffe D, Jenkins V, Saul J (2001) Psychiatric morbidity and its recognition by doctors in patients with cancer. Br J Cancer 84:10111015 3. Ford S, Fallowfield L, Lewis S (1996) Doctor-patient interactions in oncology. Soc Sci Med 42:15111519 4. Ford S, Fallowfield L, Lewis S (1994) Can oncologists detect distress in their out-patients and how satisfied are they with their performance during bad news consultations? Br J Cancer 70:767 770 5. Sollner W, DeVries A, Steixner E, Lukas P, Sprinzl G, Rumpold G, Maislinger S (2001) How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counselling? Br J Cancer 84:179185 6. Carlson LE, Angen M, Cullum J, Goodey E, Koopmans J, Lamont L, MacRae JH, Martin M, Pelletier G, Robinson J et al (2004) High levels of untreated distress and fatigue in cancer patients. Br J Cancer 90:22972304 7. NCCN (2009) Clinical practice guidelines in oncology: Distress Management [http://www.nccn.org/professionals/physician_gls/ PDF/distress.pdf] 8. Carpenter KM, Andersen BL, Fowler JM, Maxwell GL (2009) Sexual self schema as a moderator of sexual and psychological outcomes for gynecologic cancer survivors. Arch Sex Behav 38:828 841 9. Kim Y, Wellisch DK, Spillers RL (2008) Effects of psychological distress on quality of life of adult daughters and their mothers with cancer. Psychooncology 17:11291136 10. Kim Y, Kashy DA, Wellisch DK, Spillers RL, Kaw CK, Smith TG (2008) Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers. Ann Behav Med 35:230 238 11. Mystakidou K, Parpa E, Tsilika E, Athanasouli P, Pathiaki M, Galanos A, Pagoropoulou A, Vlahos L (2008) Preparatory grief, psychological distress and hopelessness in advanced cancer patients. Eur J Cancer Care (Engl ) 17:145151 12. Schou I, Ekeberg O, Karesen R, Sorensen E (2008) Psychosocial intervention as a component of routine breast cancer care-who participates and does it help? Psychooncology 17:716720 13. Sivesind D, Baile WF (2001) The psychologic distress in patients with cancer. Nurs Clin North Am 36:809825, viii 14. Anderson B, Lutgendorf S (2000) Quality of life as an outcome measure in gynecologic malignancies. Curr Opin Obstet Gynecol 12:2126

250 36. Thomas BC, Thomas I, Nandamohan V, Nair M, Pandey M (2008) Screening for distress can predict loss of follow-up and treatment in cancer patients: results of development and validity of the Distress Inventory for Cancer Version 2. Psychooncology 18:524533 37. Wong WS, Fielding R (2007) Change in quality of life in Chinese women with breast cancer: changes in psychological distress as a predictor. Support Care Cancer 15:12231230 38. Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, Mertens AC, Robison LL, Ness KK (2008) Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev 17:435446 39. Ando N, Iwamitsu Y, Kuranami M, Okazaki S, Wada M, Yamamoto K, Todoroki K, Watanabe M, Miyaoka H (2009) Psychological characteristics and subjective symptoms as determinants of psychological distress in patients prior to breast cancer diagnosis. Support Care Cancer 17:13611370 40. Chen AM, Jennelle RL, Grady V, Tovar A, Bowen K, Simonin P, Tracy J, McCrudden D, Stella JR, Vijayakumar S (2009) Prospective study of psychosocial distress among patients undergoing radiotherapy for head and neck cancer. Int J Radiat Oncol Biol Phys 73:187193 41. Hagedoorn M, Buunk BP, Kuijer RG, Wobbes T, Sanderman R (2000) Couples dealing with cancer: role and gender differences regarding psychological distress and quality of life. Psychooncology 9:232242 42. Nolen-Hoeksema S, Rusting CL (1999) Gender differences in well-being. In: Kahneman D, Diener E (eds) Well-being: the foundations of Hedonic Psychology. Sage, New York 43. Bredart A, Didier F, Robertson C, Scaffidi E, Fonzo D, Costa A, Goldhirsch A, Autier P (1999) Psychological distress in cancer patients attending the European Institute of Oncology in Milan. Oncology 57:297302 44. Keller M, Henrich G (1999) Illness-related distress: does it mean the same for men and women? Gender aspects in cancer patients' distress and adjustment. Acta Oncol 38:747755 45. Nolen-Hoeksema S, Rusting CL (1999) Gender differences in well-being. In: Kahneman D, Diener E (eds) Well-being: the foundations of Hedonic Psychology. Sage, New York 46. Peleg-Oren N, Sherer M, Soskolne V (2003) Effect of gender on the social and psychological adjustment of cancer patients. Soc Work Health Care 37:1734 47. Matthews BA (2003) Role and gender differences in cancerrelated distress: a comparison of survivor and caregiver selfreports. Oncol Nurs Forum 30:493499 48. Gilbar O (1999) Gender as a predictor of burden and psychological distress of elderly husbands and wives of cancer patients. Psychooncology 8:287294 49. Morita T, Akechi T, Ikenaga M, Kizawa Y, Kohara H, Mukaiyama T, Nakaho T, Nakashima N, Shima Y, Matsubara T et al (2004) Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol 15:15511557 50. Takesaka J, Crowley R, Casarett D (2004) What is the risk of distress in palliative care survey research? J Pain Symptom Manage 28:593598 51. Hwang SS, Chang VT, Cogswell J, Alejandro Y, Osenenko P, Morales E, Srinivas S, Kasimis B (2004) Study of unmet needs in

Support Care Cancer (2011) 19:239250 symptomatic veterans with advanced cancer: incidence, independent predictors and unmet needs outcome model. J Pain Symptom Manage 28:421432 Zietman AL, Sacco D, Skowronski U, Gomery P, Kaufman DS, Clark JA, Talcott JA, Shipley WU (2003) Organ conservation in invasive bladder cancer by transurethral resection, chemotherapy and radiation: results of a urodynamic and quality of life study on long-term survivors. J Urol 170:17721776 Lam WW, Fielding R, Ho EY (2005) Predicting psychological morbidity in Chinese women after surgery for breast carcinoma. Cancer 103:637646 Jim HS, Andrykowski MA, Munster PN, Jacobsen PB (2007) Physical symptoms/side effects during breast cancer treatment predict posttreatment distress. Ann Behav Med 34:200208 Newell R, Ziegler L, Stafford N, Lewin RJ (2004) The information needs of head and neck cancer patients prior to surgery. Ann R Coll Surg Engl 86:407410 Montgomery GH, Bovbjerg DH (2004) Presurgery distress and specific response expectancies predict postsurgery outcomes in surgery patients confronting breast cancer. Health Psychol 23:381387 Ferrell BR, Grant M, Funk B, Garcia N, Otis-Green S, Schaffner ML (1996) Quality of life in breast cancer. Cancer Pract 4:331 340 Geinitz H, Zimmermann FB, Thamm R, Keller M, Busch R, Molls M (2004) Fatigue in patients with adjuvant radiation therapy for breast cancer: long-term follow-up. J Cancer Res Clin Oncol 130:327333 Lai YH, Chang JT, Keefe FJ, Chiou CF, Chen SC, Feng SC, Dou SJ, Liao MN (2003) Symptom distress, catastrophic thinking, and hope in nasopharyngeal carcinoma patients. Cancer Nurs 26:485 493 Berkman BJ, Sampson SE (1993) Psychosocial effects of cancer economics on patients and their families. Cancer 72:28462849 Moore KA (1999) Breast cancer patients' out-of-pocket expenses. Cancer Nurs 22:389396 Given BA, Given CW, Stommel M (1994) Family and out-ofpocket costs for women with breast cancer. Cancer Pract 2:187 193 Guidry JJ, Aday LA, Zhang D, Winn RJ (1998) Cost considerations as potential barriers to cancer treatment. Cancer Pract 6:182187 Guidry JJ, Aday LA, Zhang D, Winn RJ (1997) Transportation as a barrier to cancer treatment. Cancer Pract 5:361366 Palapattu GS, Haisfield-Wolfe ME, Walker JM, BrintzenhofeSzoc K, Trock B, Zabora J, Schoenberg M (2004) Assessment of perioperative psychological distress in patients undergoing radical cystectomy for bladder cancer. J Urol 172:18141817 Trask PC (2004) Quality of life and emotional distress in advanced prostate cancer survivors undergoing chemotherapy. Health Qual Life Outcomes 2:37 Norton TR, Manne SL, Rubin S, Carlson J, Hernandez E, Edelson MI, Rosenblum N, Warshal D, Bergman C (2004) Prevalence and predictors of psychological distress among women with ovarian cancer. J Clin Oncol 22:919926 Barnett MM (2006) Does it hurt to know the worst?psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer. Psychooncology 15:4455

52.

53.

54.

55.

56.

57.

58.

59.

60. 61. 62.

63.

64. 65.

66.

67.

68.

Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.