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Table of Contents
ORIGINAL ARTICLE
Year : 2019  |  Volume : 2  |  Issue : 2  |  Page : 138-144

Quality of life and needs of the Indian advanced cancer patients receiving palliative careAssessment of the quality of life, problems, and needs of the advanced cancer patient receiving palliative care


1 Department of Epidemiology and Biostatistics, Indian Council of Medical Research – National Institute of Cancer Prevention and Research, Noida, Uttar Pradesh, India
2 Lok Nayak Hospital, MAMC, New Delhi, India
3 Department of Anesthesiology, Critical Care, Pain and Palliative Medicine, Dr. BRAIRCH, All India Institute of Medical Sciences, New Delhi, India
4 Department of Onco-anaesthesia and Palliative Medicine, Dr. BRAIRCH, All India Institute of Medical Sciences, New Delhi, India

Date of Web Publication20-Dec-2019

Correspondence Address:
Rakesh Garg
Department of Anesthesiology, Critical Care, Pain and Palliative Medicine, Dr. BRAIRCH, All India Institute of Medical Sciences, New Delhi - 110 029
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/CRST.CRST_61_19

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  Abstract 


Context: Studies related to need, problems, and quality of life in advanced cancer patients receiving palliative care are scarce in India.
Aim: The aim of the study 'was to assess the quality of life, problems, and needs in advanced cancer patients receiving palliative care.
Settings and Design: This was a cross-sectional survey in the palliative care outpatient department of a tertiary care hospital.
Materials and Methods: Survey was conducted using structured questionnaires with tools of problems and need in palliative care and the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C15-PAL.
Statistical Analysis Used: Survey results were presented for various palliative care needs and domains as per magnitude of palliative care received. Comparison of the scores for males and females was done using Mann–Whitney U-test.
Results: More than 50% patients had difficulty in daily living and majority of patients (77%) had difficulty in doing heavy work. 82% patients presented with fatigue, 47% patients had issues regarding others being overconcerned, 71% were afraid of physical suffering, 77% faced difficulties in usual activities, and 80% felt the need for being informed about the possibility of treatment and side effects. Needs were more in female patients including a statistically significant difference in sleep quality (P < 0.05).
Conclusions: Palliative care needs and quality of life in Indian patients with advanced cancer are of concern and need further attention for optimal care. Quality of life, problems, and needs in such patients need to be assessed, and provisions should be made for delivery of adequate services.

Keywords: Advanced cancer patients, India, low-/middle-income countries, palliative care, problems and needs, quality of life


How to cite this article:
Asthana S, Bhatia S, Dhoundiyal R, Labani S P, Garg R, Bhatnagar S. Quality of life and needs of the Indian advanced cancer patients receiving palliative careAssessment of the quality of life, problems, and needs of the advanced cancer patient receiving palliative care. Cancer Res Stat Treat 2019;2:138-44

How to cite this URL:
Asthana S, Bhatia S, Dhoundiyal R, Labani S P, Garg R, Bhatnagar S. Quality of life and needs of the Indian advanced cancer patients receiving palliative careAssessment of the quality of life, problems, and needs of the advanced cancer patient receiving palliative care. Cancer Res Stat Treat [serial online] 2019 [cited 2020 Feb 28];2:138-44. Available from: http://www.crstonline.com/text.asp?2019/2/2/138/273679




  Introduction Top


Advanced cancer patients experience many symptoms, including fear of the disease and death.[1] The presence of various physical symptoms restricts the day-to-day activities of these patients.[2],[3] Palliative care consists of multidisciplinary specialized medical care for such people with life-limiting illnesses like advanced cancer. It focuses on providing people with relief from the physical symptoms such as pain, psychological, mental, and spiritual stress of the terminal disease. The goal of such therapy is to improve the quality of life for both the person and the caregivers. Good palliative care leads to achievement of best quality of life for the patients and their families as well.

It is necessary to understand the patient's perspective for recognizing the need, but sometimes, patients are not able to convey their needs, hence specialized tools have been developed for the purpose.[4],[5],[6] The Problems and Need in Palliative Care (PNPC) is a validated tool that assesses the needs of cancer patients receiving palliative care.[5] The European Organization for Research and Treatment of Cancer (EORTC) QLQ-C15-PAL is a validated tool for assessing quality of life among palliative care patients.[7] The EORTC QLQ-C15-PAL comprises a truncated version having a 15-item scale from the detailed EORTC QLQ-C30 (version 3.0). The validity of tool has been developed and validated for palliative care by the EORTC. This validity of this tool as a 'core palliative care questionnaire' for assessing the symptoms and problems has been tested and found to be acceptable. The EORTC QLQ-C15-PAL tool assesses various quality of life aspects such as activities of daily living, physical symptoms, role activities, financial and administrative issues, social issues, psychological issues, spiritual issues, autonomy, information need, problem in consultation, and problem in quality of care. PNPC along with EORTC QLQ-C15-PAL together can act as an instrument that covers almost all dimensions in palliative care patient assessment.

Studies related to need, problems, and quality of life[8],[9],[10],[11] in advanced cancer patients receiving palliative care have been scarce in India. Due to various geographical and cultural differences, these needs are likely to be different from those of other Western population studies published in the literature. Furthermore, factors associated with the need and quality of care in such patients is also lacking. We, therefore, conducted a study with the primary aim to assess the quality of life, problems, and needs in advanced cancer patients receiving palliative care in the Indian scenario via a cross-sectional study. Our secondary aim was to find the factors associated with the problems and needs of care and the quality of life in advanced cancer patients receiving palliative care. We hoped that the results of our study would help the professionals, patients, and their relatives to make appropriate decisions respecting the views of such patients. Such an assessment could provide important insights to improve the quality of life of such patients and their families through establishing quality assurance.


  Materials and Methods Top


This cross-sectional study was conducted among advanced cancer patients receiving palliative care at the outpatient department (OPD) of Palliative Care at All India Institute of Medical Sciences, a tertiary care hospital in New Delhi, India. The study [Supplementary Appendix 1: Study Protocol] was approved by the Institutional Scientific and Ethical Review Board and Indian Council of Medical Research – National Institute of Cancer Prevention and Research, Noida. A total of 100 adult patients with advanced cancers (all malignancies) were surveyed as per sample of convenience and consecutive sampling technique during a 6-month period (from July to December 2017). For descriptive estimation of such medium level studies, a sample size of 100 as recommended in the literature[12] was adopted for assessing the palliative care needs in advanced cancer patients. Inclusion criteria included adults over the age of 18 years, with advanced cancer with distant metastasis, regardless of specific cancer type, attending the palliative care outpatient clinic, who were cooperative and gave consent to complete the questionnaires in the interview. Patients with any physical or mental condition impeding the process of the interviews with the use of a structured questionnaire were excluded.

Patients were explained about the study, and written informed consent was obtained. Patients were interviewed by one of the researchers using structured questionnaires [Supplementary Appendix 2: Questionnaires 1 and 2]. The questionnaire was made in English language, but the questions were asked to the patients in their local language, Hindi. The forms were filled out entirely by the researcher. It took about 15–20 min to survey a single patient, which was done during the time the patient was waiting to see the doctor or after the completion of the visit to doctor. All the information was documented on the standardized questionnaire as per the tool of PNPC and EORTC QLQ-C15-PAL which are specifically focused questionnaires for palliative care need assessment and quality of life, respectively.[5],[7] The PNPC included a comprehensive checklist of the problems, experience of patients in palliative care, and their needs (addressed as their desire for professional attention). Survey results of PNPC questionnaire provided 12 domains each of which comprised a set of questions (item) and the number of persons suffering from problem or requiring palliative care tabulated [Table 1]. Total items studied for physical symptoms were 18, difficulty in role activity 29, financial and administrative issues 5, and social issue 15. Difficulty in daily living could be due to other reasons (such as pain and psychological), and they might be able to do daily activities.
Table 1: Survey results of questionnaire on problem and needs in palliative care patients (n=100)

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Statistics

All data were entered into an Excel sheet. The survey results of the PNPC questionnaire for various palliative care needs and domains in the magnitude of palliative care were presented. Presence of multiple palliative care needs of patients was assessed by developing scores. Each item of a domain of the PNPC questionnaire if found positive was given a score of one; otherwise, it was scored as zero. The total item score for each domain of palliative care need was calculated and depicted as a box plot on total item score for each domain for males and females separately. We tested for the difference in the need of palliative care based on the sex of the patient. Comparison of the scores of males and females was done using the Mann–Whitney U-test. A difference of P < 0.05 was considered as statistically significant. Outliers were defined as extreme values denoted by asterisks. They represented cases/rows which have values more than three times the height of the boxes. The length of the Whisker denoted variations in the total score of multiple items needed in palliative care for that domain.


  Results Top


This questionnaire-based study was conducted in 100 advanced cancer patients receiving palliative care. 49 (49%) were males and 51 (51%) were females. The age of patients ranged from 22 to 85 years with the mean age of 47 ± 13.9 years for males and 42.2 ± 9.4 years for females. In the physical symptom domain, 18 items were studied of which maximum number of patients presented with fatigue-82 (82%), whereas itching was least common and was present only in 14 (14%) patients. Among social issues, 47 (47%) patients had issues regarding others being overconcerned. There were many psychological issues; 71 (71%) were afraid of physical suffering. A total of 32 (32%) patients had difficulty in maintaining faith in religion or God and 64 (64%) had difficulty in engaging usefully. A total 77 (77%) experienced difficulties in usual activities and 80% felt the need for being informed about possibility of treatment and side effect. Sixty patients (60%) reported difficulty remembering what was said during consultation. They were satisfied by the quality of health as provided to them by health-care providers. There was less concern regarding physicians and specialists. 99% were happy that their physicians involved family members in care and 86 (86%) were assured about the good follow-up by specialists after the bad news [Table 1].

Association of gender and palliative care needs based on the PNPC questionnaire survey given was analyzed [Table 2]. The items in the various domains of palliative care needs that were found to be statistically significant (P < 0.05) were tabulated. Overall, in mostly all the domains, the needs were more in the female patients in daily living. They also reported difficulty in preparing meals or cooking, shopping, and in doing light household work. The need of care was higher in females as compared to males for all the items, P < 0.05. Both the groups had positive views regarding care given by the specialist. Females were mostly better satisfied (P < 0.05) than males for the items that are shown in tables under domains of needs covering consultant.
Table 2: Association of gender and palliative care need based on problems and need in palliative care questionnaire

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[Figure 1] shows the box plot for the presence of multiple needs in various domains of palliative care in male and female patients. The much longer 'Whisker' for males denotes that they had more variations in the value of scores (presence of multiple items for palliative care need). There were few outliers in both males and females. On the basis of scores, some domains were found to have a statistically significant difference in the mean scores for male and female patients. These included the presence of financial and administrative issues (median score for males was 5, and for females, it was 6; P = 0.047); social issues (median score for males was 1 and females 6; P = 0.027); autonomy (median score for males was 3 and for females was 7; P = 0.009); and problems in consultation (median score for males was 0, for females was 3; P = 0.008). There was no significant difference found in the other palliative care needs between male and female patients, P > 0.05.
Figure 1: Presence of multiple palliative care needs in patients according to gender

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Survey results for the quality of life based on the EORTC QLQ C15-PAL questionnaire were analyzed [Table 3]. Presence of various symptoms causing deterioration in the quality of life was high in both males and females. In total, 46 males and 50 females felt weak pain; deteriorating daily activity due to pain was present in 44 (44%) males and 46 (46%) females. The feeling of being troubled during sleep was statistically significantly different between males (37%) and females (47%); P = 0.045. Other factors were not found to be statistically different in males and presence was high in both; P > 0.05.
Table 3: Survey results of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 palliative questionnaire

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  Discussion Top


We observed from our study that the palliative care needs in advanced cancer patients attending the palliative care OPD of a tertiary care center were significant and need further attention for optimal care. We found that more than half the patients had difficulty in activities of daily living, fatigue, and felt the need for more information. As expected, most of them were satisfied with the health-care physicians and specialists because of the existing palliative care services offered to them at this tertiary care center. There was a significantly higher need of palliative care in females among various domains such as daily living, physical symptoms, social, psychological, and autonomy. Although both males and females were satisfied with health-care consultants and physicians, yet females were significantly more satisfied than males. Survey on the quality of life of such patients also revealed many issues, such as weakness, pain, and depression which were more among females and were related to poor quality of life.

Other earlier surveys for palliative care need assessment have reported similar results. A survey from the OPD of a regional cancer center found that 90% patients were suffering from pain and weight loss.[13] A study from Turkey on palliative care needs of gynecological cancer patients also reported many issues in patients such as tiredness, depression, and problems in performing physical activity.[14] Pain, tiredness, and depression were found to be independent factors for suffering from advanced cancer in Saudi Arabia.[15] Palliative care services are one of the important aspects in the treatment of advanced cancer patients. These services are needed in every trajectory of the patient's illness.[16] On comparing these data from various geographical areas, it appears that the need and quality of life domains differed in the studied areas. This prompted us to analyze the particular area via such surveys to provide more comprehensive palliative care services for better patient satisfaction in various domains and thus to improve the quality of life. A study categorized palliative care facility development in various countries available throughout the world, showing changes over time and development of palliative care hospitals. Although there was an increase in palliative care services and they were available in over half of the world, with marked increases in places like Africa, yet these services continued to be grossly inadequate globally.[17] Even the service providers were not well trained to discharge their services and had no or little interdisciplinary coordination among them. A study where palliative care need was assessed in two United Kingdom hospitals found over one-third of the hospitals' inpatients met the criteria for palliative care need and there was a difference of opinion between the medical staff and nursing staff regarding the optimal health care for such patients.[18]

The palliative care needs in developing countries like India must be further assessed for formulating an optimal plan for provision of universal palliative care to all advanced cancer patients. Presently, there is gross absence of accessibility to prompt and effective treatment for these advanced chronic diseases including advanced cancers. The development of palliative care through effective, low-cost approaches is usually the only feasible alternative to respond to the urgent needs of the sick and improve their quality of life.[19] Integrating the oncology and palliative care services can be one such measure.[20] For improving access to palliative care in India, education of professionals and public awareness is emphasized.[21] The literature reports a prospective quantitative study with an aim to study the impact of basic skills training (BST) provided to immediate caregivers of the patient receiving palliative care on quality of life. The study concluded that BST aids in improving some aspects of quality of life, including significant improvement in global health status/quality of life, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation, and financial hardship of the patients.[22]

The palliative care need survey can be useful in assessing the need for palliative care services in the hospital setting for optimal utilization of such services.[13] Medical personalities other than specialists and consultants such as physicians and nurses can be trained to give quality care to palliative patients.[23],[24] Less than 1% of the Indian population have access to palliative care. Most of the cases that need palliative care remain below the radar. Tailor-made models are required for assessing the needs, and based on existing resources, simple measures can be adopted to satisfy the needs and improve the quality of life of advanced cancer patients.[25] Over the last quarter of a century, efforts by pioneers have resulted in progress. In recent years, with these efforts, a few of the major barriers have begun to be overcome. This is perhaps the first study from India reporting on the palliative care needs of advanced cancer patients. Limitations of the study include the single-center conduct and the descriptive nature of the study. There is need for such surveys in a multicenter study and interventional studies for improving patient's facilities.[26]


  Conclusions Top


Palliative care needs in advanced cancer patient attending palliative care outpatient clinics of a tertiary care center are of concern and require further attention for appropriate optimal care. Quality of life, problems, and needs in such patients were assessed and found to be deficient as per the need of patients. The needs were statistically higher in female patients. As evident, the palliative care services are not optimal in a tertiary care center and apex institute of the country, and there is a scope for improvement. It is expected that similar situation exists in other health-care centers also that are dealing with such patients. There is a definite need to provide quality care to patients on palliative care treatment.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.


  Supplementary Appendix Top



  Appendix 1: Study protocol Top



  Assessment of the quality of life, problems, and needs of the advanced cancer patient receiving palliative care Top


Rakesh Garg, Sushma Bhatnagar, Smita Asthana1, Surbhi Bhatia1, Rashmi Dhoundiyal1

Department of Onco-Anaesthesia and Palliative Medicine, Dr. BRAIRCH AIIMS, New Delhi,1Department of Epidemiology and Biostatistics, Indian Council of Medical Research – National Institute of Cancer Prevention and Research, Noida, Uttar Pradesh, India


  Introduction Top


Palliative care is a multidisciplinary approach to specialized medical care for people with life-limiting illnesses. It focuses on providing people with relief from the symptoms pain, physical stress, and mental stress of the terminal diagnosis. The goal of such therapy is to improve the quality of life (QoL) for both the person and their family. To have the knowledge of the same will give better psychological and social effects.

Cancer patients have to cope up with a limited life expectancy, they do have to struggle with fear of suffering, which may often be worse than actual fate. Patient finds doing simple tasks of daily activities difficulties as the physical symptoms of the diseases restrict it.[1],[2] It is necessary to know the patient perspective for knowing the need, but sometimes, patients are not able to convey their need.[3] Many studies were conducted in the many parts of the world regarding need assessment of palliative care of cancer patients,[4],[5] but not much work is done in India regarding the same, so study of Indian origin will help in assessment of the problems and the needs for cancer patients and might help in delivering palliative cancer.

A specific tool, i.e., The problems and need in palliative care (PNPC) instrument[4] is available for the assessment of need of cancer patients receiving palliative care. This tool among existing tools was evaluated in literature. The PNPC tool exhibited a convergent validity with EORTC and it is suitable among all as none other instrument has covered all dimensions in palliative care. In India, there are no studies using this tool in the need assessment of palliative care cancer patient. A good palliative care leads to achievement of best QoL to patient as well as their families. There were various tools available for assessing QoL among palliative care patients, EORTC QLQ-C15-PAL may be chosen as a tool for collection of data and the tool has good content validity as a “core palliative care questionnaire” for assessing the symptoms and problems for which patients are frequently treated.[6] Thus, the present study uses these tools for the assessment of need and QoL of palliative care of cancer patients.


  Review of Literature Top


As the global burden of cancer is increasing day by day, the need of palliative is also increasing. In an article by Sepúlveda et al., they mentioned about the contribution of the World Health Organization toward the development of palliative care. According to authors, “tens of millions of people worldwide are affected by life-threatening illnesses such as HIV/AIDS and cancer, which cause them and their families' great suffering and economic hardship. The majority of the cases occur in the developing world where quite often there is little accessibility to prompt and effective treatment for these diseases. The development of palliative care through effective, low-cost approaches is usually the only feasible alternative to respond to the urgent needs of the sick and improve their QoL (P. 91).“[7] Rajagopal concluded that <1% of India's 1.2 billion populations have access to palliative care. Over the last quarter of a century, efforts by pioneers have resulted in progress. In recent years, with the efforts a few of the major barriers have begun to be overcome. The South Indian state of Kerala, consists of 3% of India's population, stands out in terms of achieving coverage of palliative care. Palliative care coverage has been achieved initially by nongovernment charitable activity, which helped in the creation of a government palliative care policy. In 1986, with the traditional western model of inpatient service, the first hospice “Shanti Avedana” was established in Mumbai and later on its branches were established in New Delhi and Goa. In 1993, the Pain and Palliative Care Society was found in Calicut in the South Indian State of Kerala. In 1994, Indian association Of Palliative Care was formed. On the national level, recent years saw several improvements, including the creation of a National Program for Palliative Care by the Government of India in 2012. For improving access to palliative care in India, education of professionals and public awareness is emphasized.[8]

Palliative care services are one of the important aspects in treatment of advanced cancer patients. Thus, Lynch et al. categorized palliative care development, country by country, available throughout the world, showing changes over time. In the study, they have categorized countries on the bases of the development in palliative care using a six-part typology, i.e., Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity), Group 3a Isolated palliative care provision and 3b generalized palliative care provision, and Group 4a Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision and 4b Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In the study, they have mentioned that in 2011, 136 of the world's 234 countries (58%) had at least one palliative care service – an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa and advanced integration of palliative care has been achieved in only 20 countries (8.5%). The study finding indicated that total countries in each category are as follows:

Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). They indicated that the ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and thus, major increases are needed before palliative care is generally accessible worldwide.[9]

According to study Kumar, the overall reporting rate for pediatric palliative care articles in palliative care journals was very low, i.e., 2.66% (97/3634), and Journal of Hospice and Palliative Nursing had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care with a rate of 7.5% (5/66), and Journal of Palliative Care with a rate of 5.33% (11/206), and also, there were no randomized clinical trials and systematic reviews found. Thus, the study findings indicate a lack of adequate evidence base for pediatric palliative care.[10] The study by Kumar, indicate that the overall 5-year prevalence in reporting of articles on QoL was only 1.95% among the 12 palliative care journals reviewed, Indian Journal of Palliative Care had the highest reporting rate of 5.08% (3/59), followed by Palliative Medicine with 3.71% (20/538), and Palliative and Supportive Care with 3.64% (9/247) reporting. Thus, the reporting rate is low, since we do not have published evidence on QoL reporting in other journals. Further adequate evidence base for QoL and high-quality clinical trials are required to base clinical decisions for palliative care clinical practice.[11]

Kristanti et al. in their prospective quantitative study evaluated that how basic skills training (BST) given to family caregivers could enhance the QoL of palliative care cancer patients in Indonesia. The study finding indicated that the BST for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention indicated that a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation, and financial hardship of the patients.[12]

A cross-sectional study was done by Gardiner et al., in which palliative care need was assessed in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to the Gold Standards Framework (GSF) prognostic indicator criteria. The study finding indicated that 36.2% of patients were identified as having palliative care needs according to GSF criteria. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Thus, the results reveal that according to the GSF prognostic guide, over a third of hospital inpatients meet the criteria for palliative care need. Consensus between medical staff, nursing staff, and the GSF was poor regarding the identification of patients with palliative care needs.[13] QoL is one of the important issues to be analyzed in cancer patients, and various tools are being developed to assess the QoL in palliative care patients. Singh

(2010) in her prospective study used Hindi version of FACT-G questionnaire to assess the QoL in cancer patients receiving palliative care. The study results indicated that the Hindi version of FACT-G© questionnaire is a useful tool in measuring QOL and can be used to monitor the patient's progress and symptom control during the course of the disease. It is simple to use and time saver too.[14]

As per the study done by Stiel et al., the single-item questionnaire is unable to completely replace comprehensive questionnaires, but on the other hand, it is useful to initiate communication on QoL, thus can be recommended as a substitute for physical-functional aspects of QoL assessment in the palliative care setting. The MIDOS single item on well-being was correlated significantly with the QoL indexes of the EORTC (Spearman rank correlation r = −0.563) and FACIT-G (0.527). SEIQoL indicated low-to-moderate correlations with the other assessment tools. Subscales on physical functioning from the FACIT-G (r = 0.583) and the EORTC-QLQ-C30 (r = 0.385) had the highest correlation with the single item on well-being. Well-being correlated higher with nonphysical subscales of the QoL instruments for patients in the palliative care unit than in the radiotherapy department.[15] Thus, to assess the QOL in palliative care patients Groenvold et al. developed a shortened version of EORTC QLQ C30 which covers 9 of the 10 most frequent issues identified in the medical records of the consecutive patients admitted to specialist palliative care. This study suggests that the QLQ-C15-PAL has a core palliative care questionnaire assessing the symptoms and problems for which patients are frequently treated. It also has a good content validity.[6]

Osse et al. (2004) described a new clinical tool in their study for need assessment in palliative care, the PNPC. Tool was designed on the basis of specific demand of patients, which only can be provided when their need are clearly identified. The study finding depicted that reliability analysis supported the proposed dimensions with Cronbach's alpha coefficient >0.70 for dimension with >5 items, alpha >0.05 for 3–4 item dimension. The tool PNPC demonstrated convergent validity also with the EORTC QoL measures.[4]

PNPC was first used in Dutch in a study where it was developed and tested. The validity and reliability are established with its item response, its internal consistency, and with its correlations with the original PNPC and with European Organization for Research and Treatment of Cancer QoL Questionnaire-Core 30 and COOP/WONCA quality-of-life measures.[4]

To develop this tool two-step qualitative study was done, and then, this tool was finalized.

The EORTC QLQ-C15-PAL is an abbreviated 15-item version of the EORTC QLQ-C30 (version 3.0) developed for palliative care by the European Organization for Research and Treatment (EORTC).[8] Two methods were used for developing the EORTC QLQ-C15-PAL:

  1. Shortening multiitem scales by means of item response theory and developing algorithms for scoring the shortened scales on the original response scale metric
  2. Interviews with patients and health care professionals to identify scales and/or single items those were inappropriate or not highly relevant, and therefore, could be deleted.



  Lacunae in Existing Knowledge Top


  • The studies related to need and QoL in advanced cancer patients receiving palliative care has been scarce in India
  • There is lack of information regarding factors associated with the need and quality of care in Indian advanced cancer patients receiving palliative care.


Aims and objectives

  • Primary objective


    • To assess the QoL, problems, and needs of the advanced cancer patients receiving palliative care.


  • Secondary objectives


    • To find the factors associated with the problems and needs of care in advanced cancer patients receiving palliative care
    • To find the factors associated with the QoL in advanced cancer patients receiving palliative care.



  Methodology Top


Study design

This was a cross-sectional study design.

Study area

The study will be conducted in the Outpatient Department (OPD) of Palliative Care, AIIMS, New Delhi.

Study population

The study population comprised advanced cancer patients receiving palliative care.

Sample size

100 adult advanced cancer patients receiving palliative care will be the sample size of the study. This sample size would be sample of convenience.

Sampling technique

Consecutive sampling technique.

Selection criteria

All the advanced cancer patients receiving palliative care.

Inclusion criteria

  • Adult (>18 years of age), attending palliative care outpatient clinic
  • Advanced cancer with distant metastasis, regardless of specific cancer type
  • Patients cooperate and consent to complete questionnaires in the interview.


Exclusion criteria

  • A physical or mental condition impeding the process of interviews with the use of a questionnaire.


Data collection procedure

Patient interview for 15–20 min.

Adult advanced cancer patients receiving the palliative care will interviewed by one of the researchers with the help of structured questionnaires, i.e., PNPC and EORTC QLQ-C15-PAL. All the information will be documented in standardized questionnaire.

Tool

Tool for the collection of the data will be by PNPC and EORTC QLQ-C15-PAL QoL questionnaire [both the questionnaires are in open domain and free to use. Questionnaires attached as Appendix 2].

The PNPC have comprehensive checklist of the problems patients experience in palliative care and their needs for care (addressed as their desire for [more] professional attention). This tool assesses various QoL aspects such as

  • Activities of daily living
  • Physical symptoms
  • Role actives
  • Financial and administrative issues
  • Social issues
  • Psychological issues
  • Spiritual issues
  • Autonomy
  • Information need
  • Problem in consultation
  • Problem in quality of care.


Data analysis plan

Tabulations and percents.

Ethical considerations

Patient/patient relatives consent will be informed. Confidentiality of the data will be maintained and ethical review will be done by the Ethical Review Board of AIIMS, New Delhi.

Implications

  • The utility of the tool will be demonstrated
  • It will specifically provide the health-care need of the cancer patients receiving palliative care
  • It will help the professionals and the patients and their relatives to initiate appropriate palliative care discussion
  • Palliative care services may improve QoL emotionally and mentally for patients and their families
  • QoL assessment in palliative care settings will establish quality assurance.



  References Top


  1. Soothill K, Morris SM, Harman J, Francis B, Thomas C, McIllmurray MB. The significant unmet needs of cancer patients: Probing psychosocial concerns. Support Care Cancer 2001;9:597-605.
  2. van den Muijsenbergh M. Palliative Care by the GP. (Dissertation). University of Leiden; 2001.
  3. Osse BH, Vernooij MJ, Schadé E, Grol RP. Towards a new clinical tool for needs assessment in the palliative care of cancer patients: The PNPC instrument. J Pain Symptom Manage 2004;28:329-41.
  4. Osse BH, Vernooij-Dassen MJ, de Vree BP, Schadé E, Grol RP. Assessment of the need for palliative care as perceived by individual cancer patients and their families: A review of instruments for improving patient participation in palliative care. Cancer 2000;88:900-11.
  5. Singer PA, Bowman KW. Quality end-of-life care: A global perspective. BMC Palliat Care 2002;1:4.
  6. Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, et al. The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care. Eur J Cancer 2006;42:55-64.
  7. Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: The World Health Organization's global perspective. J Pain Symptom Manage 2002;24:91-6.
  8. Rajagopal MR. The current status of palliative care in India. Cancer Control 2015;7:57-62.
  9. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: A global update. J Pain Symptom Manage 2013;45:1094-106.
  10. Kumar SP. Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals. Indian J Palliat Care 2011;17:202-9.
  11. Kumar SP. Reporting of “quality of life”: A systematic review and quantitative analysis of research publications in palliative care journals. Indian J Palliat Care 2012;18:59-67.
  12. Kristanti MS, Setiyarini S, Effendy C. Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: A pilot study of basic skills training. BMC Palliat Care 2017;16:4.
  13. Gardiner C, Gott M, Ingleton C, Seymour J, Cobb M, Noble B, et al. Extent of palliative care need in the acute hospital setting: A survey of two acute hospitals in the UK. Palliat Med 2013;27:76-83.
  14. Singh DP. Quality of life in cancer patients receiving palliative care. Indian J Palliat Care 2010;16:36-43.
  15. Stiel S, Psych D, Kues K, Krumm N, Radbruch L, Elsner F, et al. Assessment of quality of life in patients receiving palliative care: Comparison of measurement tools and single item on subjective well-being. J Palliat Med 2011;14:599-606.



  Appendix 2: Questionnaires 1 and 2 Top


The Problems and Needs in Palliative Care Questionnaire:

Dimensions and Items (Translated from the Dutch original)

Question will be asked as:

Is this item a problem: yes ----somewhat---- no

Quality-of-Life Aspects

Activities of Daily Living and Instrumental Activities of Daily Living: 7 Items

  1. Difficulties in body care, washing, dressing, or use of the toilet
  2. Difficulties in rising, walking, climbing stairs
  3. Difficulties in preparing meals or cooking.
  4. Difficulties in shopping (food, clothes etc.)
  5. Difficulties in personal transportation (cycling, driving a car, using public transportation etc.)
  6. Difficulties in doing light housework (tidying up, etc.)
  7. Difficulties in doing heavy housework.


Physical Symptoms: 18 items

  1. Pain
  2. Difficulty in concentration
  3. Fatigue
  4. Sleeping problems
  5. Nausea or vomiting
  6. Constipation or diarrhea
  7. Incontinence
  8. Mouth problems or swallowing problems
  9. Lack of appetite or change of taste
  10. Shortness of breath
  11. Cough
  12. Itch
  13. Loss of hair
  14. Impaired vision or hearing
  15. Sexual dysfunction
  16. Prickling or numb sensation
  17. Swelling of arms, legs or abdomen (Edema)
  18. (Nightly) sweating or hot flushes.


Role Activities: 4 Items

  1. Difficulty in filling the day
  2. Difficulty in relaxing
  3. Difficulties in employment or following a study
  4. Difficulties in caring for children or babysitting.


Financial and Administrative Issues: 5 Items

  1. Extra expenditure because of the disease
  2. Reduced income because of the disease
  3. Difficulties in making arrangements (last will and testament, insurance etc.)
  4. Difficulties in filling in forms
  5. Difficulties in making my life companion acquainted with financial and administrative issues.


Social Issues: 15 Items

  1. Problems in the relationship with life companion
  2. Difficulties in talking about the disease with life companion
  3. Problems in the contact with (one of) the children
  4. Problems in the contact with family, friends, neighbors or colleagues
  5. Finding it difficult to talk about the disease, because of not wanting to burden others
  6. Finding others not receptive to talking about the disease
  7. Difference of opinion what treatments should be used
  8. Experiencing too little support by others
  9. Difficulties in finding someone to talk to (confidant)
  10. Receiving too little practical help from life companion, or from the family
  11. Others being over-concerned
  12. Others dramatizing the situation
  13. Others denying the severity of the situation
  14. Loneliness
  15. Being forsaken by others.


Psychological Issues: 15 Items

  1. Depressed mood
  2. Not experiencing pleasure anymore
  3. Fear for physical suffering
  4. Fear of treatments
  5. Fear of metastases
  6. Fear of being alone
  7. Fear of death
  8. Difficulty coping with the unpredictability of the future
  9. Difficulties in showing emotions
  10. Feelings of guilt
  11. Feelings of shame
  12. Loss of control over emotions
  13. Difficulties to accept a changed bodily appearance
  14. Difficulties to See positive aspects of the situation
  15. Being overwhelmed by all decisions that have to be made.


Spiritual Issues: 5 Items

  1. Difficulties to be engaged usefully
  2. Finding it hard to be available to others
  3. Difficulties in keeping confidence in God or religion
  4. Difficulties concerning the meaning of death
  5. Difficulties in accepting the disease.


Autonomy: 9 Items

  1. Difficulties in continuing the usual activities
  2. Difficulties in continuing social activities
  3. Difficulty in handing over tasks of another person because one is no longer able to perform former tasks
  4. Being dependent on others
  5. Frustrations because one can do less than before
  6. Experiencing loss of control over one's own body
  7. Experiencing loss of control over one's life
  8. Experiencing difficulties in asking for help
  9. Experiencing difficulties in making.


Informational Needs: 9 Items (only addressed yes/no)

  1. Information about aid (such as wigs, prosthesis, alarm devices, parking permits for the disabled, special beds, adaptations to the home, etc.).
  2. Information about places and agencies that provide help (and aids)
  3. Information about the cause of cancer
  4. Information about possibilities of treatment and the side effects
  5. Information about physical symptoms that can be expected
  6. Information about alternative healing methods
  7. Information about euthanasia
  8. Information about nourishment
  9. Information about the sexuality of people with cancer.


Quality-of-Care Aspects:

Problems in Consultations: 3 Items

  1. Experiencing difficulties in expressing disagreement
  2. Experiencing difficulties in saying one doesn't understand
  3. Experiencing difficulties in remembering what was said.


Overriding Problems in Quality of Care: 9 Items

  1. The possibility to choose another care provider
  2. Insufficient adjustment of hospital care to the home situation
  3. Difficulties fine-tuning the care of different professionals
  4. Difficulties in getting access to help from agencies/professional organizations
  5. Too slow professional reaction on an acute change in situ ation
  6. The insecurity of the availability of a hospital bed if needed (acutely)
  7. Too many caregivers around me in my house
  8. Difficulties in getting a second opinion from another doctor
  9. Lack of information in writing (inability to reread information).


Concerning the GP: 20 Items

Do you want his/her attention for this? Yes, more – As much as now – No

  1. That the GP has knowledge of treatment possibilities
  2. That the GP discusses things that went wrong in the past
  3. That the GP announces a house visit in advance
  4. That the GP comes to check if I am alright
  5. That the GP visits me in the hospital
  6. That the GP takes the time to discuss some issues
  7. That the GP takes the initiative to visit me
  8. That the GP shows his interest in me as a person
  9. That the GP listens well to what I have to say
  10. That the GP supports me if I want something different from what he proposes
  11. That the GP helps me when I have to make difficult decisions
  12. That the GP discusses what I want, and what I can expect from him in the future
  13. That the GP provides intelligible information on own initiative
  14. That the GP is honest and open about my situation
  15. That the GP supports me when I am having hard times
  16. That the GP involves my family in the care
  17. That the GP has more attention for the personal needs of my family
  18. That the GP arranges that I can speak to him personally if something happens
  19. That the GP confers with the medical specialists
  20. That the GP informs other care providers (e.g., by using a common medical file).


Concerning the Specialist: 19 Items

Do you want his/her attention for this? Yes, more– As much as now – No

  1. That the specialist discusses things that went wrong in the past
  2. That the specialist takes care that I don't have to undergo unnecessary procedures
  3. That the specialist lets me shuttle to the hospital less often
  4. That the specialist looks after me when the treatment threatens to become too much for me
  5. That the specialist ensures enough privacy during a consultation or medical investigation
  6. That the specialist arranges the appointments so that I don't have to wait so long
  7. That the specialist takes ample time to discuss a few matters
  8. That the specialist shows me his/her interest in me as a person
  9. That the specialist also supports me if I want something different from what he proposes
  10. That the specialist helps me to make difficult decisions.


  1. That the specialist discusses with me what I want, and what I can expect from him/her in the future
  2. That the specialist tells me honestly and openly how my situation is
  3. That the specialist explains honestly things in simple words
  4. That the specialist supports me when I am having hard times
  5. That the specialist involves my family in the care
  6. That the specialist has more attention for the personal needs of my family
  7. That I don't have to speak with another specialist at control consultations
  8. That the specialist keeps my GP informed
  9. That the specialist arranges a good follow-up after I get bad news.


Questionnaire 2: EORTC QLQ c15 pal questionnaire

We interested in some things about you and your health. Please answer all the questions yourself by circling the number that best applies to you. There are no “right” or wrong answers. The information that you provide will remain strictly confidential.

Please fill in your initials

Patient's name:

Age:

Sex:

Socio-economic status: Today's date:



For the following questions please circle the number between 1 and 7 the best applies to you

15. How would you rate your overall quality of life during the past week?





 
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    Figures

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    Tables

  [Table 1], [Table 2], [Table 3]



 

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