'Patients with Cancer are Distressed!' Indian Healthcare Provider Perspectives on Distress Screening and Referrals to Psycho-oncology Services - A Mixed Methods Study.

OBJECTIVES: Routine screening for distress is a guideline prescribed by the National Comprehensive Cancer Network (NCCN) to adequately assess distress in a cancer setting. Our centre conducted routine screening but failed to utilize psycho-oncology services. Our aim was to assess the extent of self-reported distress, referrals to psycho-oncology services and healthcare provider perspectives about the existing distress management system and psycho-oncology services. MATERIALS AND METHODS: We conducted a record review of adult patients (n=372) who reported to the Out-patient department of the tertiary cancer centre. Semi-structured interviews were conducted with fourteen healthcare providers. We used a concurrent mixed methods study design. Adult patients were screened for distress using NCCN-Distress Thermometer and problem checklist. Healthcare providers from different oncology specialties were interviewed and the data was analysed using descriptive thematic analysis. RESULTS: Patients screened for distress were found to report moderate to extreme levels of distress (53.5%). The total referrals to psycho-oncology support services were low (8.6%). Interviews with healthcare providers revealed three major themes: Enablers, barriers and solutions for utilization of distress management system and psycho-oncology services. CONCLUSIONS: Moderate to extreme distress was found among patients routinely screened for distress, although there was poor utilization of distress management system and psycho-oncology support services due to time constraints, patient's negative attitudes towards mental health referrals, generic screening tools and use of own clinical judgement to make referrals by healthcare providers. Future research warrants implementation of strategies to integrate psycho-oncology services into routine cancer care by focusing on improving visibility of services.

Quality of Life in Patients With Hypoparathyroidism After Treatment for Thyroid Cancer.

PURPOSE: Surgical complications such as hypoparathyroidism (HPT) or vocal cord palsy are seldom assessed when the quality of life (QOL) in thyroid cancer patients is investigated. The aim of this study was to measure the QOL difference in thyroid cancer survivors with and without HPT. METHODS: Participants for this analysis were enrolled in 13 countries from a study that pilot-tested a thyroid cancer-specific QOL instrument. They were included if they had been diagnosed with thyroid cancer at least 9 months previously. QOL was measured using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core (EORTC QLQ-C30) and some items on HPT symptoms (eg, tingling in fingers or toes). HPT status and other clinical data were extracted from the patients' medical charts. Comparisons of QOL domains between patients with and without HPT were performed using Mann-Whitney U test. The occurrence of HPT-related symptoms was compared using chi-square tests. Multiple ordinal regression analysis was performed to evaluate factors that might affect QOL. RESULTS: Eighty-nine patients participated in this study, 17 of whom were considered to have HPT. Patients in the HPT group reported significantly reduced QOL in 9 of the 15 scales of the EORTC QLQ-C30 compared to patients without HPT. Regression analysis showed that HPT was independently negatively associated with various scales of the QLQ-C30. Both groups showed a high prevalence of typical HPT symptoms. CONCLUSION: Thyroid cancer patients with HPT report significantly impaired QOL compared to thyroid cancer survivors without HPT. The assessment of HPT should be considered when measuring QOL in thyroid cancer patients.

Cervical Cancer Care Continuum in South India: Evidence from a Community-based Screening Program.

In India, cervical cancer screening is conducted at various levels; however, after screening, the adherence to the cancer care continuum is barely understood. This study evaluated a community-based cancer screening program conducted in a rural setting (Tirunelveli and Tuticorin districts) in South India and reviewed the completion of care continuum. In this longitudinal descriptive study involving secondary data collection, data from the case records of 2192 women who were consecutively screened between March 2015 and May 2016 were included. All women underwent conventional cytology-based screening (Pap smear) and Visual Inspection with Acetic Acid (VIA). Those for whom either test was positive were referred for histopathological confirmation. Patients with confirmed precancerous conditions and unsatisfactory Pap smears were referred for further management. In total, 2192 women were screened [age range, 17-69 years; mean (standard deviation), 39.2 (8.5)]. Common symptom and sign were white discharge per vaginum (34.9%) and cervical erosion (34.4%), respectively. The VIA was positive for 24% (523/2178; 14 women did not cooperate for VIA) and 113 (5.1%) had epithelial cell abnormality in the Pap smear test. Per histopathology findings, one woman had non-keratinizing squamous cell carcinoma. Seven, three, and four had cervical intraepithelial neoplasia I, II and III, respectively. Of 2192, 807 were eligible for referral (597 had positive results on either Pap or VIA). Among the 807 women referred, only 74 (9.2%) women visited the referral center. The follow-up rate was very poor accounting to fragmentation of care continuum. The success of the screening program depends on the completion of the care continuum.

Can Cancer Diagnosis Help in Quitting Tobacco? Barriers and Enablers to Tobacco Cessation Among Head and Neck Cancer Patients from a Tertiary Cancer Center in South india.

BACKGROUND: Tobacco use contributes to almost 40% of the cancers in India. Considering the potential threat, many preventive measures have been instigated in the country. However, tobacco cessation for hospitalized cancer patients is an unexplored territory in India. This study aims to understand the quit status and to explore the reasons to quit or continue the use of tobacco after the diagnosis of head and neck cancer (HNC). METHODS: HNC patients admitted between February and April 2016 were assessed for their tobacco use status. A DT was used to assess the psychological distress. Users were assessed for their readiness to quit and dependence on tobacco. An in-depth interview was conducted among 25 patients (seven current users and 18 recent quitters), and themes that emerged were discussed. RESULTS: Of the 119 HNC patients, 71 were tobacco users and 48 had quit tobacco after the diagnosis. The reasons to quit were the perceived benefits of quitting, advice from the physicians, and awareness about cancer and its association with tobacco. In contrast, the reasons to continue the use of tobacco were attributed to coping mechanisms, nihilistic perception about the outcome of the cancer, and a lack of understanding about cancer and its association with tobacco. CONCLUSION: The recent quitters comprehended the benefits of quitting and were able to prioritize their needs after the diagnosis. However, one-third of the HNC patients continued to use tobacco even after the diagnosis of cancer. Hence, tobacco cessation services need to be integrated into oncology services for achieving better treatment outcomes.

Open access tools for quality-assured and efficient data entry in a large, state-wide tobacco survey in India.

BACKGROUND: A large state-wide tobacco survey was conducted using modified version of pretested, globally validated Global Adult Tobacco Survey (GATS) questionnaire in 2015-22016 in Tamil Nadu, India. Due to resource constrains, data collection was carrid out using paper-based questionnaires (unlike the GATS-India, 2009-2010, which used hand-held computer devices) while data entry was done using open access tools. The objective of this paper is to describe the process of data entry and assess its quality assurance and efficiency. METHODS: In EpiData language, a variable is referred to as 'field' and a questionnaire (set of fields) as 'record'. EpiData software was used for double data entry with adequate checks followed by validation. Teamviewer was used for remote training and trouble shooting. The EpiData databases (one each for each district and each zone in Chennai city) were housed in shared Dropbox folders, which enabled secure sharing of files and automatic back-up. Each database for a district/zone had separate file for data entry of household level and individual level questionnaire. RESULTS: Of 32,945 households, there were 111,363 individuals aged ≥15 years. The average proportion of records with data entry errors for a district/zone in household level and individual level file was 4% and 24%, respectively. These are the errors that would have gone unnoticed if single entry was used. The median (inter-quartile range) time taken for double data entry for a single household level and individual level questionnaire was 30 (24, 40) s and 86 (64, 126) s, respectively. CONCLUSION: Efficient and quality-assured near-real-time data entry in a large sub-national tobacco survey was performed using innovative, resource-efficient use of open access tools.

The EORTC module for quality of life in patients with thyroid cancer: phase III.

The purpose of the study was to pilot-test a questionnaire measuring health-related quality of life (QoL) in thyroid cancer patients to be used with the European Organisation for Research and Treatment of Cancer (EORTC) core questionnaire EORTC QLQ-C30. A provisional questionnaire with 47 items was administered to patients treated for thyroid cancer within the last 2 years. Patients were interviewed about time and help needed to complete the questionnaire, and whether they found the items understandable, confusing or annoying. Items were kept in the questionnaire if they fulfilled pre-defined criteria: relevant to the patients, easy to understand, not confusing, few missing values, neither floor nor ceiling effects, and high variance. A total of 182 thyroid cancer patients in 15 countries participated (n = 115 with papillary, n = 31 with follicular, n = 22 with medullary, n = 6 with anaplastic, and n = 8 with other types of thyroid cancer). Sixty-six percent of the patients needed 15 min or less to complete the questionnaire. Of the 47 items, 31 fulfilled the predefined criteria and were kept unchanged, 14 were removed, and 2 were changed. Shoulder dysfunction was mentioned by 5 patients as missing and an item covering this issue was added. To conclude, the EORTC quality of life module for thyroid cancer (EORTC QLQ-THY34) is ready for the final validation phase IV.

The ban on smokeless tobacco products is systematically violated in Chennai, India.

BACKGROUND: India is the world's third largest consumer of tobacco. There are twice as many users of smokeless tobacco products (STPs) as cigarette smokers. The Government of Tamil Nadu has banned the sale of gutkha and pan masala in 2013. Our aim was to identify the varieties of illegal STP available in Chennai, India. METHODS: In systematically chosen zones and regions of Chennai city, we randomly identified three kinds of kiosks (n = 18) and asked for "gutkha" and "pan masala," one of each product available. Details of each product were reviewed based on the information printed on the sachets. RESULTS: Totally 65 STPs were collected; 26 distinct products and 23 brands. All products were claimed to be "tobacco" by the shop keepers. Sixty-five percent of the products informed to contain tobacco and 15.4% to contain pan masala. Five sachets did not inform about the content; 30.8% did not have a pictorial warning; a text warning was printed on 80.8%, but only two products had the messages in Tamil; 70% had promotional messages printed, and 57% had their registration numbers printed. CONCLUSION: The ban on STP is being systematically violated in Chennai. STP are cheap and easily available and due to promotional laudatory messages and lacking information about the content and warning of health damage, the consumers are left with the perception that they buy more or less harmless product. The Indian Government must introduce policies to control production, import, and sale of illicit STP but we also call for a coordinated international solution.

Validation of cancer institute quality of life questionnaire version II for cancer patients in India.

BACKGROUND: The Quality of Life (QOL) questionnaire version I consisted of 38 items that were validated using 392 patients. The experiences gained through the interaction with the patients during the administration of the questionnaire provided a lot of inputs for the improvization of the tool. AIM: The current study is aimed at certain modifications of the QOL questionnaire version I and standardization of the same. MATERIALS AND METHODS: The modifications of version I QOL scale included the change of verbatim, splitting, deleting, and adding of new items. Finally, version II included 42 items. It was administered to 183 cancer patients irrespective of their demographic details for further standardization. STATISTICS: The principal component method with varimax rotation was used. Spearman's product moment correlation and Cronbach's alpha coefficient were used for reliability analysis. RESULTS: The data were subjected to factor analysis to explore the factors. Eleven factors emerged with the eigenvalue ranging from 8.03 to 1.10 and accounted for 66.7% variance. The first factor contributed maximally, 19.5%, and the remaining 10 factors contributed a total of 46.2% variance on QOL. They are general well-being, physical well-being, psychological well-being, familial relationship, sexual and personal ability, cognitive well-being, optimism and belief, economical well-being, information support, patient-physician relationship, and body image. The Cronbach alpha of 0.90 and split-half reliability of 0.80 indicated a high reliability of the tool. CONCLUSION: The factor structure showed that QOL is a multidimensional concept having different aspects. The Cancer Institute QOL Questionnaire version II for cancer patients is found to be a valid and reliable tool and feasible to administer at the clinical settings.

Quality of life among younger women with breast cancer: study from a tertiary cancer institute in south India.

BACKGROUND: The incidence of breast cancer in young patients less than 35 years is less than 1%. The physical and psychosocial morbidity may affect their ability to successfully function in their social roles. Hence we studied the quality of life (QOL) issues in this subset. MATERIALS AND METHODS: Younger women with age less than 35 years, diagnosed with non-metastatic breast cancer at our Institute, from 1995 to 2005, were included in the study. Quality of life issues were studied during the follow-up using EORTC QOL C30 and BR23. Descriptive and inferential statistics were used in order to analyze the data. RESULTS: A total of 51 patients were included for the study. The mean age at diagnosis was 30 years. The effect of breast cancer on the occupation and marital status was minimal. The global health status and the functional scores were high, while the overall sexual function was lower. The global health status was higher in the mastectomy group. The arm symptoms (P = 0.027) and pain were higher in the Breast conservation surgery (BCS) group. The sexual symptoms appeared to be higher in the ovary ablated group when compared to the ovary preserved group. The sexual functional scores (P = 0.02) and sexual enjoyment scores (P = 0.003) were better in the mastectomy group. CONCLUSION: The overall QOL in younger patients with breast cancer appeared to be good. The QOL and sexual function were marginally worse in the breast conservation group when compared to mastectomy group.

Coping preferences of head and neck cancer patients - Indian context.

BACKGROUND: Cancer is a major health-related stress and demands adequate coping. Patients with head and neck carcinoma (HNC) often face exhaustive and debilitating treatment as well as physical and functional residual effects such as disfigurement, compromised speech, dry mouth and difficulty in swallowing. Understanding how patients cope with these challenges is important in comprehensive care of patients with HNC. OBJECTIVE: To assess and evaluate the coping preferences of head and neck cancer patients. MATERIALS AND METHODS: Towards this goal, a prospective study was conducted at the Cancer Institute (WIA), Chennai. 176 HNC patients participated in the study. The age group ranged from 19 to 87 years. The questionnaire used for assessing coping preferences was Jalowiec coping preference scale containing 40 items, with responses ranging on a 5-point scale. The variables chosen were treatment, site, education, survival, age and gender. STATISTICAL ANALYSIS USED: SPSS 9.0 version was used for both descriptive and multivariate analysis. RESULTS: No significant difference was observed in the preference of Emotion-Oriented Coping (EOC) in relation to age, treatment, site, education and survival. Treatment, site, education and gender showed significant differences in the preference of Problem-Oriented Coping (POC). There was, however, no difference in the preference of POC among the patients with different survival periods and age. CONCLUSION: In conclusion, HNC patients adapt both EOC and POC during the course of the illness. Literates, males and patients subjected to different modalities of treatment preferred more of POC compared to other groups.

Validation of quality of life questionnaire for patients with cancer--Indian scenario.

BACKGROUND: Quality of Life (QOL) is an important health outcome measure in oncology. Given the underlying pressure of individual geo-political entities, a universal solution may not be applicable and hence there is a need to develop a regional tool and standardize the same to address the linguistic and socio-cultural factors. OBJECTIVE: To standardize a tool to assess the QOL of patients with cancer to suit the Indian scenario. MATERIALS AND METHODS: The samples were collected from the Cancer Institute (WIA), Chennai. Samples comprise of 400 patients with all sites and stages of cancer. PERIOD: January 2001 to January 2002. Patients were in the age range of 41-60 years. Thirty-eight items were pooled from existing tools, reviews, and the field trial, by which face and factorial validity were established. Reliability of the tool was also tested. Correlation analysis was done to find out the relation between the domains of QOL. STATISTICS USED: Principal component method with varimax rotation was used. Spearmen product moment correlation and Cronbach alpha coefficient were used for reliability analysis. RESULTS: Ten factors emerged with Eigen values ranging from 8.55 to 1.10 and accounted for 62.6% of variance. The first factor contributed maximally, 22% of variance. The remaining nine factors contributed totally to 40% of the variance on QOL. The ten factors that emerged were psychological well being, self-adequacy, physical well being, confidence in self-ability, external support, pain, mobility, optimism and belief, interpersonal relationship and self-sufficiency and independence. The internal consistency using Cronbach alpha test was 0.90 and split-half reliability was 0.74. CONCLUSION: The tool was found to be highly reliable and valid. It was feasible to administer it at clinical settings.