“I want to live, but …” the desire to live and its physical, psychological, spiritual, and social factors among advanced cancer patients: evidence from the APPROACH study in India

Setting and participants

This study was part of a multi-country cross-sectional survey titled “Asian Patient Perspectives Regarding Oncology Awareness, Care and Health (APPROACH)” to assess gaps in care received by advanced cancer patients seeking care at major public hospitals in low- and middle- income countries in Asia. The site in the study is Bhagwan Mahaveer Cancer Hospital and Research Centre (BMCHRC) in Jaipur, India. Established in 1997, BMCHRC is a specialty hospital offering cancer prevention, treatment, research, and education-related services, especially for economically-disadvantaged groups of the population by subsidizing treatments or in some cases, providing it free of cost. Approximately 14,000 cancer patients visit the hospital for treatment from Rajasthan (state where Jaipur is located) and neighbouring states every year. A large proportion or the patients are from low socio-economic strata and present with advanced stages of cancer when they first consult with physicians.

We recruited inpatients and outpatients from the departments of medical oncology and radiotherapy and palliative care from 7th March 2017 to 16th August 2018. Inclusion criteria was patients who were over the age of 21, diagnosed with stage 4 solid cancer, and aware of cancer diagnosis (not necessarily its stage). Only patients with solid cancer were included because those who were diagnosed with cancers like lymphoma or leukemia progress differently and have a different staging system which would create inconsistencies in analysis and interpretation.

The study was approved by the Institutional Ethics Committee of Bhagwan Mahaveer Cancer Hospital & Research Centre (Ref No: BMH/ 2016/89) and the National University of Singapore (Ref No: B-15-319).

Figure 1 presents the patient recruitment diagram. Targeting a sample of 200 patients, the research team screened 210 medical records for the eligibility criteria and identified 209 eligible patients. Among these eligible patients that our trained interviewers approached, 8 patients refused to participate in the study. From 201 patients who consented to the study, 200 completed the interview, which results in a response rate of 99.5%.

Fig. 1figure 1Survey questionnaire

In consultation with oncologists, we developed a questionnaire and validated instruments to measure patients’ QoL in physical, psychological, spiritual, and social domains. We also collected patients’ demographic information that includes gender, age, education level, marital status, SES, caste (if any), religion, ethnicity as well as their awareness of their advanced cancer stage. All questions in English were translated by professional translators into Hindi, which is commonly spoken at the site, according to a strict translation protocol for interview, and patients’ answers were translated back to English. Cross-validation between the original and back translated versions were made to ensure the consistency. More details about the dependent and independent variables (predictors) of interest are discussed below.

Outcome variable: DTL

In the survey, we asked them a single question enquiring if they ever wished their life would end sooner. They could answer it with yes, no, or not sure. The source of this question was the first item of the Desire for Death Rating Scale [18], which underwent pilot testing on 10 patients who met the eligibility criteria before being included in the survey. The reason for choosing a single-item measure as opposed to a multi-item validated scale was because questions discerning the desire for an early death were deemed sensitive and a mental health professional was not always available to alleviate any potential distress participants might experience. To create a dummy variable for DTL, we reversed interpretation of the responses for this negatively-phrased question in a way that patients who answered no/not sure were considered to have DTL (DTL = 1). On the contrary, we assigned a value of zero for patients who responded to ever wish to end their life sooner.

Physical factors: pain severity

To get a holistic picture of the severity of pain experienced by participants, we elicited patients’ pain experience through four items from Hindi version of the Brief Pain Inventory- Short Form (BPI-SF) [25], at its different levels (worst, least, and on average) and/or in different times (the last 24 hours and the time of responding to the questionnaire). Specifically, participants were asked to rate their pain on a scale of 0 to 10 wherein they can only choose whole numbers (i.e., 0, 1, 2 etc.). We then computed the mean value as a measure of pain severity for patients who responded to at least three out of the four items and left missing otherwise. The number of the latter case is nil. The range of possible values is 0 to 10.

Psychological and spiritual factors Psychological distress

We assessed participants’ psychological distress using the Hospital Anxiety and Depression Scale (HADS), which consists of two subscales for measuring anxiety and depression with 7 items each. Each item has 3 levels (1 to 3) with a higher value indicating higher levels of distress (i.e., anxiety or depression). We reverse scored positively phrased statements and summed these item responses to obtain HADS-anxiety and HADS-depression, which ranges from 0 to 21, respectively. For each subscale, HADS defines scores from 0 to 7 as “Normal”, 8–10 as “Borderline Abnormal” or “being suggestive of the presence of anxiety/depression”, and 11–21 as “Abnormal” or “indicative of the probable presence of the mood disorder” [26]. We also combined these two subscales for HADS-total (0 to 42).

Self-blame

Participants also answered two questions about how much they blamed themselves for their diagnosis due to their behaviour (e.g., smoking, drinking etc.), which was termed behavioural self-blame (BSB), and due to personal characteristics that they perceive as in-built traits which are not subject to change or susceptible to their control, which was termed characterological self-blame (CSB). Possible responses to these questions were 1 (not at all) to 4 (completely), respectively. For analysis, a dummy variable for the presence of BSB and CSB (BSB = 1 and CSB = 1, respectively) was used as we considered patients who responded with scale 2, 3, or 4 to each question to have experienced either BSB or CSB. This was to ensure an even distribution of patients across the two categories.

Spiritual well-being

Using the 12-item Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale (FACIT–Sp) [27, 28], we measured spiritual well-being of participants in two domains: spiritual meaning/peace (from the first 8 items) and faith (from the last 4 items). The former scale measures the patients’ peacefulness, sense of meaning and purpose in life, whereas the latter scale measures their sense of comfort and strength from spiritual beliefs. We reverse scored negatively framed questions and summed item responses so that higher score indicated higher spiritual well-being. Possible scores range from 0 to 32 for the first subscale and from 0 to 16 for the second.

Social support Social well-being

The survey instrument included the 7-item Functional Assessment of Cancer Therapy-General questionnaire to assess patients’ social/family well-being (FACT- SWB) [29] through evaluating 1) their communication with and the support provided by their friends, family, partner, and other close relations, and 2) the acceptance of illness by the aforementioned support system (perceived by the patients). Each question asked participants to report levels of support on a scale of 0 (not at all) to 4 (very much). The total score ranges from 0 to 28 with a higher score indicating better social/family well-being.

Social stigma

We used the Sense of Stigma factor questions from the Shame Stigma Scale [30] to evaluate feelings of shame or embarrassment patients may have around others’ cognitive and emotional reactions to their cancer diagnosis. Social stigma was scored from 5 (never feels stigma) to 30 (always feels stigma) based on 6 questions which assessed the extent to which patients felt ashamed of, ostracized for, or discriminated against, due to their diagnosis.

Awareness of advanced cancer stage

Lastly, we added one categorical-type variable that recorded whether patients were aware of their late cancer stage. Patients were asked if they knew the current stage of their cancer. If they answered with “Advanced Cancer (Stage IV)”, then we assigned a value of one to this variable and zero for otherwise (i.e., “Early Stage (Stage I, II or III) or “I don’t know”).

Statistical analysis

We analyzed the relationship between patients’ DTL (binary variable: Yes/No) and physical, psychological, spiritual, social factors as well as the awareness of the late cancer stage, using a linear probability regression model. The demographic variables that we controlled for include gender (male = 1, female = 0), age, years of education, a dummy for married (married = 1, otherwise = 0), religion (non-Hindu = 1, Hindu = 0), type of caste (General Caste = 1, otherwise = 0), and SES (poor = 1, otherwise = 0). We used the last variable to identify socially and economically disadvantaged groups of patients whose DTL may be significantly different from that of non-disadvantaged groups. In the survey, patients were asked to report their perceived SES among the four pre-classified options: Poor, Low-Middle class, Upper-Middle class, and Wealthy. We created a dummy variable for the lowest SES, by assigning a value of one for patients reporting “Poor” and zero for others (SES: Poor = 1). One study reports a high correlation between the subjective SES and self-rated health and health outcomes [31]. The self-reported SES may also be a good proxy for financial distress which is often hard to be measured due to large missing data for household income and difficulty in classifying occupational class.

Using linear regression models, we also examined if there are differences in physical, psychological, spiritual, and social factors between a low socio-economic and a high socio-economic group. In the regression models with the dummy for “Poor” SES (SES: Poor = 1) as the primary independent variable of interest, we controlled for other demographic characteristics that include gender, age, education, marital status, caste (general vs. otherwise), and religion (Hindu vs. non-Hindu).

The number of patients for analysis is 192 with no missing information for the variables of interest. An examination of missing data did not reveal any systematic or non-random patterns, and missing scale scores were minimal, ranging across study measure from 1% (on the primary outcome measure, DTL) to 3% (on the stigma measure). All analyses were conducted at STATA 14.

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