Translation and Linguistic Validation of the Multidimensional Dyspnea Profile into Hindi in a Palliative Care Setting

The multidimensional dyspnoea profile (MDP)

The MDP has been developed to include all aspects of dyspnoea, both perceptual and affective, each of which is evaluated separately.^[11] The questionnaire has been shown to be useful and valid in assessing breathlessness in patients with a variety of chronic lung conditions, such as COPD and interstitial lung disease^[2,3] and in patients with cardiorespiratory disease.^[12] The user defines the time frame or situation of the measurement. MDP assesses the patient’s experience of dyspnoea for a specific time (yesterday or over the past 2 weeks, for instance), and the patient is expected to focus on that specific period when responding. The questionnaire is made up of 5 ‘applies/does not apply’-questions and 11 different rating scales divided into three domains. The first domain uses a numeric scale of 0–10 to rate the overall unpleasantness of dyspnoea. The second domain evaluates the perceptual aspects of dyspnoea using numeric scales and ‘applies/does not apply’-questions. The third domain evaluates the affective aspects of dyspnoea using numerical scales.^[4] The first and second domains consider the ‘immediate perception of dyspnoea’, and the third domain is the ‘emotional response.’^[4] For example, opioids have been found to have a stronger effect on the unpleasantness and associated anxiety than on the intensity of dyspnoea^[13] and pulmonary rehabilitation has been shown to improve the patient’s coping and function in relation to dyspnoea with the symptom intensity possibly remaining unchanged.^[14]

The MDP was developed in English by Banzett et al. in the United States in 2011 and has since been translated into different languages, including Swedish, French for France, French for Belgium, French for Canada, German, Dutch for Belgium, Dutch for the Netherlands, English for Canada and English for the UK, Japanese and Spanish.^[10] The MDP can be used free of charge in the context of non-funded academic research. A distribution fee applies in the context of funded academic and commercial use. Supplementary materials and figures are available on the European Respiratory Journal website. However, the instrument’s usability is still limited by the few languages it has been translated into.

Health care and the importance of palliative care in India

Although the MDP has been validated in high-income countries, its relevance in low/middle-income countries is yet unclear. In India, a low/middle-income country, the public healthcare system is heavily underfinanced, with limited free healthcare options and a multitude of private care options offered at varying costs.^[13] Today, approximately 83 million people (6%) of India’s population are living in poverty, amongst which 51 million people (4%) are living in extreme poverty,^[14,15] meaning living on <1.90 US dollars a day.^[14] Moreover, despite a high prevalence of dyspnoea in patients with advanced-stage cancer,^[5] the MDP has not been validated in a palliative care setting. It is estimated that only 1–2% of all patients in need of palliative care in India receive it^[16] compared to 14% worldwide.^[17] There is currently no tool for the multidimensional measurement of dyspnoea available in Hindi, a language spoken by over 500 million people,^[10,17] which highlights the need for the MDP to be translated into this language and validated in an Indian context. A Hindi version of the MDP could facilitate improved detection and measurement in research and clinical practice in India, as well as comparisons of dyspnoea across languages. We, therefore, aimed to develop a linguistically validated Hindi translation of the MDP.

Aim

The study aims to translate the MDP into Hindi and linguistically validate it for use in an Indian palliative care setting with a high rate of illiteracy.

Study design

Structured translation and linguistic validation of the MDP^[9] from the original American English into Hindi conducted in collaboration with the company Mapi Development, SAS, Language Services Unit, Lyon, France, specialised in translation and linguistic validation of patient reported outcome (PRO) measures.

Research ethics and patient consent

The study was approved by the Ethics Committee at the MNJIORCC in Hyderabad, India. The patients and family members were given oral information from health-care staff regarding the study. Informed consent was obtained from all patients. The consent forms were signed by the patients either in writing or with their fingerprints. The consent form was also signed by witnesses and the healthcare staff.

The translation and linguistic validation were performed in accordance with the guidelines and regulations from Mapi Research Trust, Lyon, France, available at COA translation and linguistic validation | Mapi Research Trust (mapi-trust.org).

Translation

Translation and linguistic validation were conducted in a structured, multistage process according to international guidelines.^[18,19] After permission to translate, the MDP was obtained from the developer,^[10] and the original instrument was forwards translated into Hindi independently by two certified translators, native in Hindi, assigned by Translated S.R.L, Rome, Italy. The forwards translations were analysed and reconciled by a third translator into one version, Version 1. In step two, Version 1 was then backwards translated to the original language (American English). The backwards translation was reviewed and compared to the original by an in-country linguistic consultant provided by the translation bureau above, and appropriate changes were implemented to obtain translated Version 2.0. The translation process took place from the 13^th of October to the 2^nd of November 2022

Clinicians’ review

The translation Version 2.0 was reviewed by two Indian physicians (authors GP, SR) at Mehdi Nawaz Jung Institute for Oncology and Regional Cancer Registry (MNJIORCC). They provided detailed feedback on the understandability and validity of key concepts to users of the instrument and people with dyspnoea. The changes were made to obtain Version 2.1 before initiating the study.

Patient selection

Patients included in the study had all been admitted to palliative care, either in-home care or at the Kumudini Devi Hospice. Inclusion criteria were 18 years or older, conscious, able to answer questions regarding breathlessness, native speakers of Hindi and an affirmative response to the question, ‘Have you had any breathing problems at rest or during activity that was distressful during the past 2 weeks?’ Patients younger than 18 years, non-native speakers of Hindi and those with cognitive impairment were excluded.

Linguistic validation

The MDP translated Version 2.1 in Hindi was read out aloud to the patient, at one single point, by one of the healthcare staff, and the patient answered the individual questions. All data were collected by experienced palliative care nurses or physicians using a standardised protocol. The staff then conducted the cognitive interviews to investigate the clarity, understandability and acceptability of the MDP instrument. The validated questions for the patients are shown in Appendix 1. The participants commented on their understanding of each item and suggested alternative formulations for problematic wordings [Appendix 2].

The staff who conducted the patient interviews was then themselves interviewed, to gain an understanding of any underlying problems or misunderstandings of the translated Version 2.1, expressed by the patients. The validated questions for the staff are shown in Appendix 3. The staff who conducted the interviews commented on problems or misunderstandings and suggested alternative formulations for problematic wordings [Appendix 2]. The sample size was determined by reaching data saturation.

After summarising, revising and proofreading, a final linguistically validated MDP in Hindi was issued as Version 3 [Appendix 4]. The linguistic validation process occurred from November 28^th to December 16^th, 2022.

Patient and Public Involvement statement

The study focuses on patients admitted to palliative care. We believe that involving patients and the public in palliative care research is of paramount importance, as it helps us better understand the experiences and needs of those who are most vulnerable and, thus, in need of palliative care. The patient and public involvement (PPI) throughout the execution and analysis of this research, we actively sought input and feedback both from the patients enrolled in the study and the healthcare workers responsible for their palliative care.

Patients’ demographics

The study patients had different cancer diagnoses, as follows: Lung (n = 3), rectal (n = 2) and breast cancer (n = 1) and additionally, in one patient, an unknown tumour diagnosis. Amongst these patients, four were males and three were females, aged between 42 and 68 years. Dyspnoea severity, assessed by the patients’ responses to the statement ‘I am not getting enough air’ on the shortness of breath questionnaire (SQ), using a scale of 0–10 to indicate the intensity of breathing sensations, exhibited variability, with scores ranging from 3 (n = 1), 4 (n = 2), 5 (n = 1) to 7 (n = 3). Most patients (n = 5) received care at home, while two were in hospice care [Table 1]. Data listing the demographics of the patient group included, ranging from educational level to household income. Provides an overview of the socioeconomic status of the patients. [Supplementary Table 1].

Translation

After extensive input from the clinicians’ review and the in-country linguistic consultant, revisions were made to the initial translations, especially regarding the wording of the descriptive items (second domain).

Linguistic validation

A total of 7 Hindi-speaking patients were included. The interviews were conducted with 5 patients within the palliative home care service and 2 patients at the Kumudini Devi Hospice. Demographics are presented in Table 1. Out of the 7 participants, only six patients were able to complete all questions in the form. All patients answered the validation questions during the interviews.

In total, three doctors and one nurse were interviewed and answered the validation questions for the healthcare staff.

In total, five patients (72%) stated that they did not find the MDP questions difficult to understand, whereas two patients (28%) found it difficult to understand. However, two patients (28%) left an incoherent description of the symptom as ‘the most accurate’ in step 2 sensory qualities (SQ) choice, which was mismatched with the answer reported in step 1 (SQ choice) [Appendix 1]. These discrepancies were either that the patient did not answer the question in step 2 at all, or they chose a symptom that they in step 1 had marked as ‘does not apply, ’ or they chose more than one symptom as ‘most accurate. ’

There was also a discrepancy when comparing the question of ‘applies/does not apply’ in SQ choice and the grading of the symptom on a scale from 0 to 10 in the SQ scales. In all, four patients (57%) reported symptoms as ‘does not apply’ on SQ choice while still grading it above a ‘0’ in SQ scales when using Version 2.1 of the translated MDP.

All the healthcare staff (4/4) stated during their interviews that they had gained insight into and more information about the patients’ dyspnoea from using the MDP. They found the instrument useful both in the palliative home-care service and at the hospice. The shortcoming of the translated MDP instrument, Version 2.1, highlighted by the healthcare professionals was the wording of some statements that still could be perceived as difficult to understand and thus lead to misunderstanding and incoherent answers in patients with low levels of education. Another concern was that although the MDP provided a better overview of various qualities of a patient’s breathlessness, it was time-consuming, which could be a barrier for use in severely ill patients (at least several or all items of the instrument).

Final revisions of the translated MDP

Before validation of the translated MDP instrument (Version 2.1) started, feedback was provided by healthcare professionals that the ‘radio metaphor’ found in the American English version of the MDP and shown in Appendix 5 would be difficult to comprehend amongst patients with a low education level and in an Indian context. The recommendation was to remove this metaphor from the translated Version 2.1. To verify this concern, the validation of the MDP initially included the radio metaphor. When asked, patients stated that they were either ‘irritated by music’ or that they ‘listened to music to relieve their symptoms,’ interpreted as a misconception of this metaphor. Consequently, the metaphor was removed from Versions 2.1. Changes made included exchanging specific words for more commonly used ones to facilitate the understanding of the MDP in the studied population. In SQ scales, the exact word ‘scale’ in English was added instead of the translated word, as ‘scale’ is commonly used and well understood in Hindi, according to the physicians involved in the project. In the affective (A2) scales, the word for ‘some’ in Hindi was added to the instructions to make them easier to understand.

After the above-mentioned editing of the translated MDP Versions 2.1, Final Version 3 was then issued.

The Hindi version was approved by the Mapi Institute (August 28, 2023) and added to their database for future use by other researchers.

The exact revisions made during the validation process can be seen in Appendix 2.