Sage Journals: Discover world-class research

Abstract

Background:

Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns.

Aim:

To translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi.

Design:

The study applied a standardized methodology entailing six phases for translation and content validation: equivalence setting through a three-step process; forward translation; blind backward translation; expert review by a panel of the POS team; cognitive de-briefing with patients; and proof-reading of the final tool. All interviews and focus groups were audio-recorded, transcribed and analyzed using content analysis.

Setting/participants:

(1) Healthcare professionals including doctors, nurses, psychologists, counselors, and volunteers working in Indian palliative care settings with expertise in both English and Hindi languages; (2) Hindi speaking patients diagnosed with cancer who were receiving palliative care in community settings. Caregivers, palliative care experts, and language translators contributed to the translation procedure.

Results:

Phrases like nausea, poor appetite, drowsiness, and depression were difficult to translate into Hindi. Response categories “occasional” and “sometimes” were overlapping. All items, instructions and response categories were simple to understand. A visual thermometer is a unique feature of Hindi IPOS to facilitate responses from less educated patients.

Conclusion:

Hindi IPOS has face and content validity for use in clinical practice and research. The Hindi IPOS has implications beyond Indian palliative care settings. Millions of Hindi speakers can now respond to IPOS, and have a tool for communicating their palliative care needs in their mother tongue to inform patient-centered care.

Keywords

Patient reported outcome measures palliative care end of life care cross-cultural comparison cancer patients India focus groups

What is already known about the topic?

Culturally relevant and valid psychometric patient-centered outcome tools to assess palliative care concerns are critical for channeling resources where they are needed most

Cultural and local contexts must be considered when using patient-centered outcomes in different settings

Integrated Palliative care Outcome Scale (IPOS) is a clinically relevant, reliable, valid, brief patient-centered outcome tool for capturing the multidimensional impact of symptoms and concerns in advanced illness

What this paper adds?

This paper highlights the importance of cultural adaptation, moving beyond translation to exploring, rephrasing and communicating meanings and concepts clearly in diverse cultures

This study provides insight into personalized assessments of concerns and needs within a specific population, allowing for a more holistic approach to person-centered care for Hindi speaking patients

This paper demonstrates the importance of cognitive interviews and focus group discussions in ensuring content validity

Implications for practice

Integration of the Hindi IPOS for use in care settings will support person-centered and a holistic approach to care that meets individual needs

Hindi IPOS could be used to identify patient’s unmet needs and make the most of resources to address them

Features of Hindi IPOS such as the thermometer scale support feedback from patients who may have different educational backgrounds

Introduction

Since the introduction of palliative care in India in the 1980s the need for palliative care has continued to grow.^1–3 In low to middle-income countries such as India, 78% of those who require palliative care are not receiving it.⁴ A person-centered outcome tool will support palliative care services, focusing resources where it is needed most.⁵ Palliative care practice requires a personalized assessment of patients’ symptoms, priorities, needs, and concerns for the best delivery of person-centered care.⁴ To facilitate this, culturally relevant, brief, valid person-centered outcome tools are needed to evaluate palliative care services and the unmet needs of patients. In Indian settings, there are condition specific patient centered outcome measures (PCOM) available in Hindi that are used in clinical research and practice^6,7. However, a valid and brief PCOM focusing on life-limiting and advanced illness is relevant and beneficial to wider groups of patients. The Palliative Care Outcome Scale (POS) family of measures are person-centered outcome tools for patients living with life-limiting illnesses.^8,9 POS measures have been validated in persons living with cancer, respiratory, heart, renal, liver failure, and neurological disorders.^10–16 The Integrated Palliative Outcome Scale (IPOS) belongs to the POS family of measures and has been translated into more than 16 languages, and is widely used with patients receiving palliative care services, demonstrating its usefulness to clinical practice and research. IPOS is a brief 10-item scale that has questions about physical symptoms, mood, family anxieties, practical concerns and financial needs. IPOS is a brief person-centered outcome tool that supports the integration of palliative care in resource limited settings, where prioritization of the most urgent patient needs is required. Cross-cultural adaptation of psychometric instruments has been recommended by researchers to account for the ‘cultural context and lifestyle of the target population’,^17,18 and to limit the risk of introducing bias into the study and producing misleading results. This study aimed to translate and culturally adapt IPOS in Hindi and to ensure the measure is conceptually equivalent, relevant, and compatible with cultural patterns, meaning, and values for Hindi speaking populations.

Methods

Design

A translation and cultural adaptation study was carried out in six phases summarized in Figure 1 and detailed subsequently. Standard methodologies prescribed by the POS development team¹⁹ and guidelines published by the European Organization for Research and Treatment of Cancer (EORTC) were used.²⁰

Figure 1.

Translation and cross-cultural adaptation process.

Six phases were followed to translate and culturally adapt the instructions, individual items, and response options (Figure 1). For the first phase, equivalence setting, we conducted a scoping literature search, cognitive testing with a purposive sample of seven palliative care professionals and two focus group discussions with patients. For the second phase, forward translation in Hindi was completed by three independent translators. For the third phase, blind backward translation was completed by three additional independent translators. For the fourth phase, the backward translation version was reviewed by the POS expert panel. During the fifth phase, qualitative pretesting and de-briefing were conducted with Hindi speaking patients through in-depth interviews. Data collection began in July 2017 and ended in December 2019 (TB & S).

Phase I: Equivalence setting

Scoping literature search

We conducted a scoping literature search to identify Patient Reported Outcome Measures used in Indian settings and to identify the most common concerns reported by Hindi speaking patients receiving palliative care services. We searched MEDLINE (1966–2018) and updated the search in 2021 (1966–2021) through PubMed and the Indian Journal of Palliative Care. We used the following keywords “palliative care” and “end of life care”.

Face to face interviews with professionals

We conducted semi-structured interviews with professionals using a topic guide (see Supplementary Appendix 1). Questions focused on comprehension (“What does this question from IPOS English mean to you in your own words?”), retrieval (“-How well could you remember your experience when answering this question?”), and response patterns of each item of the IPOS. Conversations took place in English. All interviews were audio-recorded, transcribed, and analyzed using content analysis by TB & S.

Face to face focus group discussions with patients

Two focus group discussions were conducted in CanSupport clinics to understand if the concepts in IPOS were recognized by Hindi speaking cancer patients. Each group consisted of eight to nine adults with different cancer diagnoses and lasted approximately one hour. A topic guide (which was drafted based on responses from face-to-face interviews with professionals in the prior step) was used to explore cognitive processes for each item (see Supplemental Appendix 2). At this stage, interpretation of words was explored. Focus group discussions were audio-recorded, and a researcher made field notes. Two researchers with experience in qualitative research (TB & S) listened to the audio recordings and prepared a report. The report captured whether the concepts used in IPOS were relevant to the culture before moving on to the next phase.

Phase II: Forward translation

The IPOS was translated into Hindi with the help of three translators: 1) a palliative care expert, 2) a language expert, and 3) a family caregiver. All were native Hindi speakers, fluent in English. The first two translators produced two different and independent translations of IPOS. These two versions were reviewed by a an independent family caregiver and the lead author of this study (TB). A detailed report of the process of translation, challenging phrases in the Hindi language, and mutually agreed upon decisions were prepared and presented to for the POS development team for approval ahead of Phase III.

Phase III: Blind backward translation

Three translators were recruited, all were blind to the original IPOS. The first two translators, a palliative care doctor and a language expert independently translated the Hindi IPOS back to English, these were then compared to the original IPOS by a third translator, a family caregiver to ensure consistency. Any inconsistencies between the Hindi and original English version were addressed by the POS development team in Phase IV.

Phase IV: Expert review

A member of the POS development team at the Cicely Saunders Institute, King’s College London, together with the lead author of this paper, reviewed and discussed the pre-final version and the methods used. MH and a native Hindi speaking independent reviewer reviewed the Hindi IPOS and suggested changes. The pre-final Hindi version was drafted and agreed upon before progressing to the next phase.

Phase V: Cognitive de-briefing

A second sample of patients attending palliative care outpatient clinic appointments at CanSupport were approached to pilot whether instructions, items, and response categories of Hindi IPOS were clear. Patients read each item and were asked to think aloud, providing their feedback and suggestions on how items, instructions, or responses could be improved. Patient feedback was reported to the POS development team for review. MH and TB discussed the suggestions which were incorporated into the final version of Hindi IPOS.

Phase VI: Professional proofreading

The final versions of the Hindi IPOS for staff and patients in hospital and community settings were proofread by a professional Hindi language editor. The Hindi IPOS was published on the POS website.

Setting

This research was implemented at CanSupport—a charity that offers home palliative care services in Delhi, national capital regions including Ghaziabad, Noida, Gurgaon, Merrut, and one of the neighboring states, Punjab—through multidisciplinary community teams.

Ethical approval

The study was approved by the CanSupport Research Ethics Committee.

Population

From Phase I to Phase VI the following individuals were invited to support the translation and cross-cultural adaptation process: who met the following inclusion criteria:

Inclusion criteria

Patients:

Hindi speaking patients over the age of 18 attending the outpatient palliative care clinic provided by CanSupport between June 2019 and December 2019. Patients needed to have capacity to consent. Patients who were unable to communicate or too unwell to participate were excluded.

Professionals:

Professionals who provided palliative care services at CanSupport and a tertiary care hospital.

Key bilingual academics, family caregivers and professional editors were identified by TB and invited to participate in forward and backward translations of Hindi IPOS.

Results

Table 1 summarises the characteristics of participants who took part in this study.

Table 1.

Characteristics of patients and translators across various stages.

Participants	Gender	Age*
Patients involved in focus group discussion (Phase I)
Eight patients (Focus group discussion I)	4F	47*
Nine patients (Focus group discussion II)	3F	44*
Professionals involved in forward translation (Phase II)
Hindi language editor	M	65
Medical doctor	F	58
Caregiver	F	35
Professionals involved in backward translation (Phase III)
English language expert	F	53
Medical doctor	M	40
Cancer survivor	F	42
Patients involved in cognitive de-briefing (Phase V)
Six patients	3F	39*
Professionals involved in proofreading (Phase VI)
Professional Hindi language editor	M	65

Median age reported.

Phase I: Equivalence setting

The scoping search for identifying PROMs used in Indian settings returned 9 relevant articles from PubMed and 100 articles from the Indian Journal of Palliative Care. We found that few scales are available in Hindi, namely the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTCQLQ)³⁰ generic along with disease-specific measures,^6,7 World Health Organization Quality of Life Questionnaire (WHOQLQ 100 & WHOQLQ-BREF), EQ5D/3D,^21–23 General Health Questionnaire GHQ,²⁴ Patient Health Questionnaire PHQ²⁵. These tools are widely used to understand the quality of life of cancer patients in an Indian context, but culturally valid palliative care specific instruments are lacking.

The most common concerns reported by Hindi speaking patients receiving palliative care services were pain, dyspnea, restlessness, bowel obstruction, depression, anxiety, stress, poor quality of life, changes in sleep, appetite, energy, spiritual/religious concerns, family emotional issues, social security, and financial needs.^26–41 A brief review of available tools and literature suggested that concerns raised in the IPOS were holistic and covered all concepts confirming face and content validity.

Table 2 represents the characteristics of seven professionals who participated in IPOS Hindi cognitive testing. All patients were receiving community palliative care services. One group had equal representation of gender while another had 2:1 for male and female respectively.

Table 2.

Characteristics of professional participants from cognitive testing interviews.

Job title (No. of professionals)	Setting	Age* (at data collection)	Experience range (years)	Education
Clinical team (Nurses and doctors)⁴	Hospital & Home Care	42	1–19	Degree in Nursing, Medicine with palliative care specialization
Other Support professionals and volunteers³	Hospital & Home care	57	4–17	M.A (Psychology) and M.Phil. Community health, Law

Median age is reported.

Professionals and patients did not agree with the use of the following terminology: “concerns,” “anxious”, “depression”, “peace”, “practical problems”. The professionals suggested replacing the word “concerns” with “problems,” as they felt that the Hindi definition of the word “problems” gave better clarity. It was agreed that the word “anxious” would be replaced with “tension”, “peace” with “peace at heart”, and “depression” would be supplemented by explanatory phrases such as “feeling sad or low” to avoid any misunderstanding with clinical depression. The phrase “practical problems” in the last item of the original IPOS was changed to “illness and treatment related” to make it more specific. Explanatory phrases like “personal problems” and “financial problems” were retained for clarity.

The two response categories namely “occasional” and “sometimes” were often overlapping. Professionals felt the phrase “overwhelmingly” indicated a degree of emotion rather than physical symptoms. Table 3 represents the IPOS phrases which were difficult to understand along with their most appropriate equivalent Hindi phrase as suggested by professionals.

Table 3.

Challenges with some phrases used in the original IPOS in adapting them to the Indian setting and their equivalent phrase/term.

Original IPOS phrase	Equivalent Hindi phrase	Comments by professionals in palliative care
Concern	Problem (परेशानी)	The question is easy to understand but I think we can remove the word “Concern” only “Problems” is sufficient. (ACH05) I would umm. . .I would say “Yes, what are your main problems?” (ACH05) That’s what I would like [rather] than concerns. Concerns would be a little bit difficult to answer. (CNS07)
Nausea	Feelings of vomiting (उल्टी का अहसास / उल्टी जैसा लगना)	Nausea.. needs to be changed. We can.. ask them if you are feeling sick. (ACH05) Nausea. . .No, you will have to say vomiting. Nausea is the feeling. . .they won’t understand. A patient will only relate to vomiting. Nausea as a category they will not understand. May be if we say . . ..“feelings of vomiting” (CNS07)
Vomiting (being sick)	Vomiting (उल्टी आना)	This item is ok once translated to the local language and being sick needs to be dropped as it means not being well in our context (CNS06)
Anxious	Tense/Worried (तनावग्रस्त/चिंतित)	[I] want to drop the word. . ..anxious and want to retain the word “Being worried”. [The] patient may not be very clear about the word anxious(CNS03). We can put “Have you been feeling tense?” because with “anxious” [a patient may] get confused.(ACH05)
Constipation	Inability to pass stool (कब्ज)	“Constipation” . . . this word is difficult for the patient. Some patients may call hard stool as constipation instead of inability to pass stool for a particular duration let’s say 48–72 hours. Instead of constipation you would like to replace it with “hard stool” or “inability for the bowel movement” (CNS03)
Depression	Feeling sad, hopeless, lonely, crying often (उदास, निराश, अकेला महसूस करना, बार-बार रोना)	Sometimes patient also take depression as a sickness. . . separate sickness. . .. . .. So, they may not be comfortable using this term. (CNS03 Instead of “depression,” we use the word sad, “Sad ” is a common word, for depression they may think, they are patient or mentally ill. . .(ACH05) Depressed many times is a strong word, because depressed is basically a psychiatric or psychological term which is clinical, So, sadness instead of depression (CNS06)
Feeling peace	Having peace at heart (दिल में शांति हो/ मन शांत होना	Somebody who is like suffering from cancer. . .. would never get at peace. (CNS01) for the last 10 years I am working with patients and . . .. eh. . . they might not attain that peak of peace. . .. because they are always worried. Because there is cancer. . .. (CNS04) Not clear (ACH02) This is a difficult question, they won’t understand. . . (CNS07)
As much as you wanted	Sufficient (पर्याप्त)	This is a bit confusing for me too. . … What does this mean? We have to elaborate. . . information about what? We have to give them [a] very specific thing to answer. (CNS03) What I think is . . . question is little bit lengthy. (ACH05) We may say : do you have sufficient information, about the illness or treatment(CNS04)
Practical problems	Personal and financial problems (व्यक्तिगत और वित्तीय समस्याएं)	Practical problems???? they won’t know what is practical. . .. . .and what is impractical?(CNS03) Any practical problem. . .. . . so is that like after the treatment (CNS04) they may not understand it if we look at it from patient’s point of view. (CNS01)
Occasional	Very rare (बहुत दुर्लभ/ बहुत कम)	occasionally and sometimes they may confuse. For sometimes they may think its occasionally. Use “Rare” instead of occasionally, (CNS03) occasionally is not a good, (CNS07)
Overwhelmingly	Most of the time (अधिकांश समय/ अधिकत्तर समय)	Overwhelming is an emotional type [of] thing . . ..(ACH05) Patients [will] understand it better if you [do not put] overwhelmingly. . .″ (CNS04)

Phase II: Forward translation

During forward translations, some phrases were translated differently by the two translators. The research team and the third translator discussed the variations until a consensus was reached. The Hindi meanings of nausea such as “mithli aana” or “ji michlana” are not commonly used in day-to-day language or are often used in the context of pregnancy. Therefore, the research team in consultation with the third translator chose a more common phrase “ulti jesa lagna” (feeling like vomiting). “Poor appetite” when translated in Hindi means “loss of appetite,” so a commonly used word “kam bhoog lagna” was chosen. For drowsiness “feeling sleepy most of the time” was chosen after a lengthy discussion with all translators. The literal Hindi meaning of depression was not commonly used in day-to-day language so explanatory phrases were added to convey that depression did not mean a clinical diagnosis. Explanatory phrases included feeling hopeless, isolated, extremely sad, and frequently crying. Item eight on knowledge and item tenth on practical problems of the original IPOS were difficult to translate. After discussion, the research team finalized a phrase that meant “sufficient information about disease and treatment” rather than “complete knowledge of illness.” For the item on practical problems, it was agreed that the Hindi word meaning “solutions to personal problems were given to the patient” would be used. Figure 2 represents the process of translation and reaching a consensus for difficult phrases in Hindi.

Figure 2.

The process of translation and reaching a consensus for difficult phrases in Hindi. Translation 1: translation given by translator 1, Translation 2: translation given by translator 2, Translation 3: consensus between translator 3 and the research team.

Phase III: Blind backward translation

Two independent translations were similar in meaning but the sentence structure and grammar differed. In one translation, sentence structure was in dialog format whilst the other was in instruction format. The third translator and the research team unanimously decided to choose the dialog format as it was closer to the original IPOS and extended a personal touch for patients.

The backward translations of the difficult phrases: “nausea”, “drowsiness”, “poor appetite” had similar meaning to the items used in the original IPOS suggesting appropriate use of Hindi words for these phrases.

Phase IV: Expert review

Following detailed discussions, numeric order was added to the response categories along with Hindi words. MH suggested the use and testing of a visual thermometer (Visual Analog Scale) together with a pictorial scale adopted from the African Palliative Care Association African Palliative Outcome Scale (African APCA African POS)⁴² to facilitate responses from persons who were not able to read and write.

Phase V: Cognitive de-briefing

The cognitive de-briefing of the pre-final Hindi IPOS version with six palliative care patients suggested that all items, instructions, and response categories were clear and understandable. Patients enjoyed responding using their fingers, but two patients were confused while answering reverse scale items where higher numbers indicated better status. Patients found it easier to indicate their response using the thermometer.

Discussion

Validity of IPOS within a Hindi setting

The cross-culturally adapted IPOS Hindi is freely available for use in Indian palliative care settings from the POS website (https://www.pos-pal.org). The Hindi IPOS is conceptually equivalent to the original English version. Several concepts proved challenging to translate and adapt to Hindi including. words such as “concerns”, “problems”, “nausea”, “depression” and “anxious”. These words have also proved difficult to adapt in French⁴³ and German⁴⁴ IPOS. Another challenging concept was “being at peace”. This concept was also found to be difficult to translate to French, but was found to be more familiar in Turkish⁴⁵ settings. We took extra care to deeply explore these items with professionals during cognitive interviewing. Professionals state that diseases like cancer bring challenges to the patient, not only for their own physical and emotional health, but for their family life, related responsibilities, social connections, and their work-life balance. Thus, in such circumstances patients may find it difficult to experience peace. Therefore, in place of a state of peace and tranquility as included in the original English version of IPOS, the Hindi IPOS version referred to “carrying a feeling of peace” instead.

Two response categories namely “occasionally” and “overwhelmingly” were particularly challenging as they both have similar meanings in Hindi, so these two categories were difficult to differentiate. Similarly, “overwhelmingly” referred to the emotion of a person instead of rating the emotions on a degree or scale. This is similar to the difficulty of the response option “occasional” in IPOS validation in Turkish45 where this phrase carried a different meaning and needed to be changed.In an Indian health setting, patients were not used to rating their response on a five-point scale. The low education level of a large number of participants made it difficult for them to remember the five categories and then decide which option to choose. We therefore introduced a Visual Analog Scale adopted from the African Palliative Care Association African Palliative Outcome Scale (African APCA African POS)⁴².

In response to the first item of IPOS which asked patients their concerns in the past week, patients often shared at length their difficulties and problems which often exceeded the one-week timeframe. This suggests that patients need someone to listen to their concerns, thus a psycho social professional in the team may help patients to share their feelings. This also has practical implications, suggesting that for final administration of Hindi IPOS, professionals need to keep the patient focused on current concerns in the past week.

Implications for use in practice

Despite the challenges experienced in translating individual phrases at the equivalence setting and forward translation phases, none of the professionals or patients found IPOS tiring or difficult to respond to. Patients saw it as an opportunity to share their deep-rooted concerns in a guided way. Similar experiences were reported by the teams working on IPOS translations in Italian⁴⁶ and German⁴⁴ suggesting the utility of IPOS in clinical settings across varied cultures.

This work has implications for patients across India and beyond. In north India, Hindi is the dominant language among people of all socio-economic groups, especially among less educated groups. In northern India, the capital city, Delhi, attracts patients from neighboring states as specialized services for public and private cancer care are available. As of the 2011 census, out of a total population of 1.2 billion in India, 52 million people reported Hindi as their mother tongue,⁴⁷ 13 million reported Hindi as their second language, and another 2.4 million as their third language, suggesting a total of 57% of the Indian population speak Hindi.⁴⁸ Across the world, Hindi was rated as the third most spoken language in 2019 with 615 million speakers worldwide.⁴⁹ Hindi speaking populations across the world are not only in Asian countries, but also in US and European countries, and many others like Australia and New Zealand.⁵⁰ IPOS Hindi will support these individuals to recognize their palliative care needs. The adaptation and validation of Hindi IPOS will be extended to patients living with advanced conditions including complexity and multiple morbidities.

Limitations

The study was conducted through the community teams of a charitable palliative care organization that has its centers in the capital city of Delhi and neighboring regions. Hindi has slightly varied dialects across India, residents abroad may also have varying levels of proficiency in Hindi; this may prove to be a limitation of the tool. Future studies could include Hindi speaking respondents from more regions as well as non-oncology settings. The study was limited to community and oncology settings, with a lack of representation from hospice settings.

Conclusion

The Hindi IPOS is relevant not only in Indian palliative care settings, but also for all the Hindi speaking patients settled elsewhere in the world who will now be able to utilize the tool to communicate their care priorities and needs. Further refinement may be needed for Hindi speakers living in different countries. The challenges faced in adapting a European measure into a different culture may provide an example of specific considerations that should be given when undertaking global adaptation and validation work. Our study shows that Hindi IPOS is simple to understand and relevant in capturing patient-centered outcomes in clinical practice and research. Psychometric validation of Hindi IPOS is underway.

Supplemental Material

sj-pdf-1-pmj-10.1177_02692163221147076 – Supplemental material for Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients

Supplemental material, sj-pdf-1-pmj-10.1177_02692163221147076 for Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients by Tushti Bhardwaj, Rachel L Chambers, Harry Watson, Srividya, Irene J Higginson and Mevhibe B Hocaoglu in Palliative Medicine

Supplemental Material

sj-pdf-2-pmj-10.1177_02692163221147076 – Supplemental material for Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients

Supplemental material, sj-pdf-2-pmj-10.1177_02692163221147076 for Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients by Tushti Bhardwaj, Rachel L Chambers, Harry Watson, Srividya, Irene J Higginson and Mevhibe B Hocaoglu in Palliative Medicine

Supplemental Material

sj-pdf-3-pmj-10.1177_02692163221147076 – Supplemental material for Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients

Supplemental material, sj-pdf-3-pmj-10.1177_02692163221147076 for Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients by Tushti Bhardwaj, Rachel L Chambers, Harry Watson, Srividya, Irene J Higginson and Mevhibe B Hocaoglu in Palliative Medicine

Footnotes

Acknowledgements

The authors express sincere thanks to CanSupport for extending support for implementation of the project. Our special thanks to Dr. Reena, Head of Home care teams at CanSupport for all coordination and facilitating data collection in their premises. We thank all professionals, caregivers, patients, translators who gave us their precious time during this project. Authors also thank research volunteers Ms. Sony Kumari and Ms. Renu who assisted us during focus group discussions. IJH is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King’s College Hospital National Health Service Foundation Trust. IJH leads the Palliative and End of Life Care theme of the NIHR ARC SL and co-leads the national theme in this. MBH is supported by the NIHR ARC SL and RC is a NIHR pre-doctoral fellow. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care. MBH is also supported by a Fulbright Grant under the provisions of the Mutual Educational and Cultural Exchange Act of 1961 (as amended), the FULBRIGHT PROGRAM, administered by the Bureau of Educational and Cultural Affairs, United States Department of State with the cooperation of the Institute of International Education, the views expressed in this article are those of the authors and not necessarily the Government of the United States or any agency representing it has endorsed the conclusions or approved the contents of the publication.

Author contributions

TB conceived the project which was approved by IJH on behalf of the POS Development Team at KCL. TB, MH, and IJH designed the study procedure. Procedures were approved by all authors. TB & S collected the data in the field. All authors contributed to data analysis, interpretation and drafting the paper.

Declaration of conflicting interests

Authors declare that there are no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. IJH, RLC, HW, and MBH are members of the POS Development Team at KCL.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support was from the National Institute for Health Research (NIHR), Applied Research Collaboration, South London, hosted at King’s College Hospital NHS Foundation Trust, Palliative Outcome Scale Development Team and Cicely Saunders International (Registered Charity No. 1087195). The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.

Data management and sharing

Data from the project is available from the corresponding author.

Research ethics and patient consent

Ethics approval was received from the Ethics committee of CanSupport, a charity in Delhi in India where the study was implemented vide approval dated 6th December 2017.

ORCID iDs

Rachel L Chambers

Irene J Higginson

Supplemental material

Supplemental material for this article is available online.

References

Khosla

Patel

Sharma

SC.

Palliative care in India: current progress and future needs. Indian J Palliat Care 2012; 18(3): 149–154.

Seamark

Ajithakumari

Burn

, et al. Palliative care in India. J R Soc Med 2000; 93(6): 292–295.

Bag

Mohanty

Nerbadyswari

, et al. Palliative and end of life care in India-current scenario and the way forward. J Assoc Phys India 2020; 68(11): 61–65.

WHO. Palliative care: Key facts 2019, https://www.who.int/news-room/fact-sheets/detail/palliative-care (Accessed 28 February 2022).

Rajagopal

Venkateswaran

Palliative care in India: successes and limitations. J Pain Palliat Care Pharmacother 2004; 17(3–4): 121–128; discussion 129–130.

Chaukar

Das

Deshpande

, et al. Quality of life of head and neck cancer patient: validation of the European Organization for research and treatment of cancer QLQ-C30 and European Organization for research and treatment of cancer QLQ-H&N35 in Indian patients. Indian J Cancer 2005; 42(4): 178.

EORTC Quality of Life. Questionnaire & tools, https://qol.eortc.org/questionnaire/qlq-br23/ (2021 accessed 28 February 2022).

Palliative Outcome Scale (POS) [Internet], https://www.pos-pal.org(2021, accessed 6 December 2021).

Bausewein

Daveson

Currow

, et al. EAPC white paper on outcome measurement in palliative care: improving practice, attaining outcomes and delivering quality services - recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med 2016; 30(1): 6–22.

10.

Murtagh

Ramsenthaler

Firth

, et al. A brief, patient- and proxy-reported outcome measure in advanced illness: validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliat Med 2019; 33: 1045–1057.

11.

Ellis-Smith

Evans

Murtagh

, et al. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: the Integrated Palliative care Outcome Scale for dementia. Palliat Med 2017; 31(7): 651–660.

12.

Bausewein

Booth

Gysels

, et al. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010; 13(9): 1109–1118.

13.

Kane

Daveson

Ryan

, et al. Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure. BMJ Support Palliat Care 2017; 7(4): 470–479.

14.

Dzingina

Higginson

McCrone

, et al. Development of a patient-reported palliative care-specific health classification system: the POS-E. Patient 2017; 10(3): 353–365.

15.

Wilson

Hepgul

Saha

, et al. Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale. Sci Rep 2019; 9(1): 4972–4976.

16.

Murphy

Murtagh

FEM

Carey

, et al. Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: use of a short patient-completed assessment tool. Nephron Clin Pract 2008; 111(1): c74–c80.

17.

Gjersing

Caplehorn

Clausen

Cross-cultural adaptation of research instruments: language, setting, time and statistical considerations. BMC Med Res Methodol 2010; 10: 13.

18.

Reichenheim

Moraes

CL.

Operacionalização de adaptação transcultural de instrumentos de aferição usados em epidemiologia. Rev Saúde Pública 2007; 41: 665–673.

19.

Antunes

BBA

Witt

Daveson

, et al. The Palliative Care Outcome Scale family of measures; Manual for cross-cultural adaptation and psychometric validation, http://pos-pal.org/Resources.php (2012).

20.

Dewolf

Koller

Velikova

, et al. EORTC Quality of Life Group translation procedure. 3rd ed. EORTC Quality of Life Group, 2009. Brussels, Belgium. https://groups.eortc.be/qol/downloads/translation_manual_2009.pdf (Accessed 28 February 2022).

21.

EuroQol Research Foundation. EQ-5D-5L United Kingdom: EuroQoL, https://euroqol.org/eq-5d-instruments/sample-demo/ (2009) (Accessed 28 February 2022).

22.

Jyani

Prinja

Kar

, et al. Valuing health-related quality of life among the Indian population: a protocol for the development of an EQ-5D value set for India using an extended design (DEVINE) study. BMJ Open 2020; 10(11): e039517.

23.

Kohler

Sidney Annerstedt

Diwan

, et al. Postpartum quality of life in Indian women after vaginal birth and cesarean section: a pilot study using the EQ-5D-5L descriptive system. BMC Pregnancy Childbirth 2018; 18(1): 427–513.

24.

Gautam

Nijhawan

Kamal

Standardisation of hindi version of goldbergs general health questionnaire. Indian J Psychiatry 1987; 29(1): 63–66.

25.

Kochhar

Rajadhyaksha

Suvarna

VR.

Translation and validation of brief patient health questionnaire against DSM IV as a tool to diagnose major depressive disorder in Indian patients. J Postgrad Med 2007; 53(2): 102–107.

26.

Butola

Inappropriate referrals at the end of life–the existing Indian scenario. Support Care Cancer 2014; 22(8): 2219–2222.

27.

Fox

Jackson

Pain, palliative care, and compassion in India. J Pain Palliat Care Pharmacother 2015; 29(4): 412–415.

28.

Mishra

Bhatnagar

Philip

, et al. Psychosocial concerns in patients with advanced cancer: an observational study at regional cancer centre, India. Am J Hosp Palliat Care 2010; 27(5): 316–319.

29.

Molassiotis

Yates

, et al. Mapping unmet supportive care needs, quality-of-life perceptions and current symptoms in cancer survivors across the Asia-Pacific region: results from the International STEP Study. Ann Oncol 2019; 30(3): 493–498.

30.

Yennurajalingam

Rodrigues

Shamieh

, et al. Perception of curability among advanced cancer patients: an International Collaborative Study. Oncologist 2018; 23(4): 501–506.

31.

Bhowmik

Kumar

End-of-life care for patients afflicted with incurable malignancy and end-stage renal disease. Indian J Palliat Care 2014; 20: 99.

32.

Patnaik

Pany

Rao

, et al. End-of-life care and social security issues among geriatric people attending a Tertiary Care Hospital of Eastern India. Indian J Palliat Care 2018; 24: 402.

33.

Inbadas

The philosophical and cultural situatedness of spirituality at the end of life in India. Indian J Palliat Care 2017; 23(3): 338–340.

34.

Verma

Lal

Kumar

, et al. Initial experience of head and neck cancer patients treated in an oncologist led palliative cancer care clinic at a tertiary cancer care center in Uttar Pradesh: is the initiative of a full-fledged palliative care for cancer patients justified. Indian J Palliat Care 2016; 22(4): 477.

35.

Jayalakshmi

Chatterjee

End-of-life characteristics of the elderly: an assessment of home-based palliative services in two panchayats of Kerala. Indian J Palliat Care 2016; 22(4): 491–498.

36.

Ghoshal

Miriyala

Elangovan

, et al. Why newly diagnosed cancer patients require supportive care? An audit from a regional cancer center in India. Indian J Palliat Care 2016; 22(3): 326–330.

37.

Deodhar

Salins

Muckaden

MA.

Documentation of assessment of spiritual concerns of adult advanced cancer patients: an audit in a hospital-based specialist Palliative Care Service. Indian J Palliat Care 2021; 27: 495–502.

38.

Mahendru

Gupta

Soneja

, et al. Need for palliative care in patient with rheumatoid arthritis: a cross-sectional observational study. Indian J Palliat Care 2021; 27(2): 275–280.

39.

Dhande

Kumar

Bolane

Assessment of psychosocial distress among the palliative care patients in Wardha district of Maharashtra. Indian J Palliat Care 2020; 26(3): 302–305.

40.

Dhavale

Koparkar

Fernandes

Palliative care interventions from a social work perspective and the challenges faced by patients and caregivers during COVID-19. Indian J Palliat Care 2020; 26(Suppl 1): S58–S62.

41.

Antony

George

Jose

TT.

Stress, coping, and lived experiences among caregivers of cancer patients on palliative care: A mixed method research. Indian J Palliat Care 2018; 24(3): 313–319.

42.

Blum

Selman

Agupio

, et al. Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa. Health Qual Life Outcomes 2014; 12(1): 1–9.

43.

Sterie

A-C

Bernard

Challenges in a six-phase process of questionnaire adaptation: findings from the French translation of the Integrated Palliative care Outcome Scale. BMC Palliat Care 2019; 18(1): 1–9.

44.

Schildmann

Groeneveld

Denzel

, et al. Discovering the hidden benefits of cognitive interviewing in two languages: the first phase of a validation study of the Integrated Palliative care Outcome Scale. Palliat Med 2016; 30(6): 599–610.

45.

Hocaoglu

Hepgul

Tunnard

, et al. Towards patient-centred cancer care: cross-cultural validity and responsiveness of the Turkish integrated palliative care outcome scale. Health Qual Life Outcomes 2020; 18(1): 312–411.

46.

Veronese

Rabitti

Costantini

, et al. Translation and cognitive testing of the Italian integrated palliative outcome scale (IPOS) among patients and healthcare professionals. PLoS One 2019; 14(1): e0208536.

47.

Registrar General | Census Commissioner. Paper 1 of 2018 Language India, states and union territories (Table C-16). New Delhi: Office of the Registrar General of India, 2011.

48.

Office of the Registrar General & Census Commissioner, India. Population Census 2001. Table C-17: Population by bilingualism and trilingualism, NCT of Delhi - 2001. https://censusindia.gov.in/nada/index.php/catalog/22919. (Accessed 4th January 2023).

49.

All India Radio News. Hindi is 3rd most spoken language in the world with 615 million speakers after English, https://newsonair.gov.in/News?title=Hindi-is-3rd-most-spoken-language-in-the-world-with-615-million-speakers-after-English%2C-Mandarin&id=381514 (2020). (Accessed 28th February 2022).

50.

WorldAtlas. Hindi speaking countries. Quebec: Reunion Technology Inc., 2021. https://www.worldatlas.com/articles/hindi-speaking-countries.html (Accessed 28th February 2022).

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.63 MB

0.59 MB

0.43 MB