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. 2024 Jul 29;21:14799731241267305. doi: 10.1177/14799731241267305

A survey exploring the needs, preferences, and challenges of the key stakeholders for participating in and developing pulmonary rehabilitation in Pune, India

Shruti D Sahasrabudhe 1,✉, Mark W Orme 2,3, Suryakant Borade 1, Meenakshi Bhakare 4, Mahavir Modi 5, Ilaria Pina 2,3, Zahira Ahmed 2,3, Rashmi Padhye 1, Andy Barton 2,3, Michael C Steiner 2,3, Sundeep Salvi 1, Sally J Singh 2,3
PMCID: PMC11289815  PMID: 39075037

Abstract

Considering a huge burden of chronic respiratory diseases (CRDs) in India, there is a need for locally relevant Pulmonary rehabilitation (PR) services. This cross-sectional survey was aimed to explore the interest, needs and challenges among various stakeholders for PR in Pune city, India. At the outpatient respiratory medicine department of a multi-speciality hospital in Pune, India, 403 eligible people with CRDs were invited to participate in the survey, of which 370 (92%) responded and agreed to participate. (220 males, mean ± SD age 56 ± 15 years). Out of the 370, 323 (87%) people with CRDs were keen to attend PR. In a multiple selection question, there was inclination towards paper-based manuals home-based (70%) and web-based (84%) programs. 207 healthcare providers (HCPs), including physicians, pulmonologists and physiotherapists involved in the care of people living with CRDs across Pune city were invited to participate in the survey. Out of the 207, (80%) of the HCPs believed that PR was an effective management strategy and highlighted the lack of information on PR and need for better understanding of PR (48%) and its referral process. The surveyed stakeholders are ready to take up PR, identifying specific needs around further knowledge of PR, modes of delivery, and referral processes, that could potentially feed the development of relevant PR programs in the Indian healthcare settings.

Keywords: Pulmonary rehabilitation, chronic respiratory diseases, chronic obstructive pulmonary disease, stakeholder needs, lower and middle income countries

Introduction

The burden of chronic respiratory diseases (CRDs) in India exceeds 100 million cases and shows signs of growing further. India has the largest number of deaths due to CRDs in the world and contributes to 32% of global CRD disability adjusted life years. 1 An estimated 25% of people who visit a primary healthcare provider in India do so for chronic respiratory diseases. 2 CRDs are associated with long-term morbidities, characterised by chronic breathlessness, chronic cough and reduced exercise tolerance. People living with Chronic Obstructive Pulmonary Disease (COPD), for example, often fall into a vicious cycle of functional disability leading to physical inactivity and further deconditioning. 3 Pulmonary rehabilitation (PR) is a non-pharmacological multidisciplinary intervention, supported by the highest level of scientific evidence, 4 that improves quality of life, reduces mortality and reduces economic loss.5,6 Despite the global recommendations for PR, services are underutilized in low-and middle-income countries (LMIC), including India. 7 Although there are physiotherapy clinics, tertiary care hospitals with speciality services in respiratory medicine, there is a dearth of standardization and documentation of the available pulmonary rehabilitation programs, the structure of the program or even the referral pathways. Several factors relate to this situation including unavailability of resources to deliver PR services and lack of awareness about PR among various stakeholders.8–11 Worldwide, poor awareness and knowledge of PR among healthcare professionals is a major barrier to patient-referral. 8 Additionally, current international PR guidelines are based on evidences and healthcare systems from high-income countries, which may not necessarily be applicable in LMICs.9–11 The healthcare system in India is a mix of public and private players where the referral systems, care models and fee for care differ largely impacting the development, structure and uptake of healthcare services. The healthcare system in India is primarily steered by the programs for control and management of non-communicable diseases that briefly cover chronic respiratory diseases however, there is a need for guidelines on pulmonary rehabilitation. 11 Several other factors like lack of awareness and willingness of the healthcare providers that catalyse the availability and accessibility of rehabilitation services, for example, healthcare facility managers prefer setting up critical care services over rehabilitative services. 7 Limited formal training on PR for HCP and a resulting small proportion of physiotherapists opting for cardiopulmonary specialty further contributes to this challenge.12,13 While PR benefits are widely accepted in high income countries, there is a dearth of evidence from the Indian healthcare setting. Only two studies identified the benefits of PR in a systematic review in LMICs, both were classified as being at moderate risk of bias. 14 It is necessary to identify the interest and needs of stakeholders so as to roll-out evidence-based PR services contextualised to the socio-cultural backgrounds of people with CRDs and variations in healthcare delivery systems.13–15 This study aimed to explore the interest and needs of people living with COPD and HCPs around PR in Pune city, India.

Methods

Study design

A cross-sectional survey was conducted among key stakeholders of PR, specifically people living with CRDs and the healthcare providers including doctors and physiotherapists involved in their care.

Study populations

For the people living with CRDs the inclusion criteria were a physician diagnosis of CRD, which included asthma, chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD) and cystic fibrosis); age ≥18 years; and an interest in participating in the survey. The people not interested and not willing to consent were excluded.

Eligible HCPs included those taking care of people living with CRDs like general physicians, pulmonologists, and physiotherapists from Pune city and urban outgrowths and interested in participating in the survey.

Since this was an exploratory survey the sample sizes were not derived based on statistical sampling methods and involved purposive sampling technique.

Study setting and recruitment

The study was conducted in Pune district of Maharashtra state which is the 8thlargest metropolis in India. Data collection was conducted between December 2020 to December 2021 at the department of respiratory medicine, Symbiosis Medical College for Women (SMCW) and Symbiosis University Hospital and Research Centre (SUHRC), a 350 bedded medical college and tertiary care hospital in Lavale, Pune. Based on the eligibility criteria, people with CRDs visiting the out patients’ department of the hospital were referred by the treating doctors to the research team members who gave the detailed information about the study and invited potential participants to respond to the survey.

HCPs were recruited from hospitals and clinics in Pune, India that care for people with CRDs. We also noted the care facility where the HCPs practiced and categorized them into, private clinic or hospital and public health facility. As the Corona Virus Disease of 2019 (COVID-19) pandemic began during the data collection period, the risk of contagion was taken into account and a hierarchical approach to data collection was taken 1 : data collection in person with all the required precautionary measures or 2 over telephonic/video calls or 3 online surveys using Google forms. Verbal or written consents were obtained as suited to the data collection procedures. Consent was read out in entire for the illiterate participants with CRDs and their thumb impression was taken in presence of an unbiased witness.

Survey tools

The study was undertaken by an independent research team who were not involved in regular care of the patients. They were sensitized to the study objectives, and the questionnaires before the data collection phase began. Initial pilot study was conducted among 30 people living with CRDs and 40 HCPs to assess the internal consistency of the questionnaires.

An interviewer-administered questionnaire was used for data collection among the people living with CRDs which was available in English and included information regarding demographics, self-reported impacts of their disease. Participants were also asked about their willingness to attend a program that alleviated their suffering and improved the activity levels. Their preferred mode of delivery and the duration they are willing to commit to the program was also included in the survey. The study team trained on the data collection, administered these questionnaires.

The HCP survey was conducted using a self-administered questionnaire that included details on their specific roles and years of experience in caring for individuals living with CRDs, their understanding, willingness, preparedness, needs and challenges around development and referral of PR.

Questionnaires for both participants were developed as part of the National Institute of Health Research (NIHR) Global Health Research Group on Respiratory Rehabilitation (Global RECHARGE, 17/63/20), with contributions from clinicians and researchers from several LMICs and the UK. 16 Internal validation was conducted by pre-testing these among 10 HCPs and 30 people living with CRDs prior to data collection. The final version of the questionnaires after minor alterations like re-phrasing of wordings were used for data collection.

Data analysis

The questionnaires were reviewed for completion and only the completed forms were considered for analysis. All the data were anonymized, and no identifiable or sensitive data were collected. The data were reported as frequencies and percentages. The data were managed using REDCap software. The data were exported to Microsoft excel for analysis. The open-ended questions were grouped into themes and analysed using simple frequencies.

Ethical considerations

Ethical approval was obtained from Institutional Ethics Committee in Symbiosis International (Deemed) University, Pune as well as from the Institutional Ethics Committee, University of Leicester, UK (Ref No. 22,349).

Results

People living with CRDs

A total of 403 eligible people with CRDs were invited to participate in the study, of which 371 (92%) agreed to participate, answered the questionnaire completely and were therefore included in the analysis (220 males, mean ± SD age 56 ± 15 years) (Figure 1). The respiratory medicine outpatient facility at SMCW and SUHRC records about 3500 patients annually, which makes the survey sample to be approximately 10.5% of the total database. Due to lack of time and interest, 32 (8%) were unwilling to participate in the survey. The CRDs included Asthma (n = 193, 52%), COPD (n = 162, 44%) and other diseases (16,4%) such as Interstitial Lung Disease (ILD) and Cystic Fibrosis (CF). Due to the COVID-19 pandemic restrictions, 96 people with CRDs (26%) were contacted by telephone and 275 (74%) participated in person. Out of the 371 participants, there were 89 participants (24%) who were illiterate and 282 (42%) involved in paid work currently (e.g. farming, driving, housekeeping, clerical jobs).

Figure 1.

Figure 1.

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Recruitment of study participants.

Participants reported functional limitations in terms of activities of daily living and work-related productivity (Table 1). Significant number of participants (n = 300, 81%) reported being bothered by their breathlessness. Activity limitations in the form of day-to-day work (n = 234, 63%), inability to be physically active (n = 268, 72%) and visiting friends and family (n = 160, 43%) were attributed to CRD related breathlessness. Work related functional limitations (n = 194, 52%) and absenteeism (n = 178, 48%) were also reported.

Table 1.

Disease impact reported by people living with CRDs.

Participants reporting disease impact in the form of activity and functional limitations Frequency (%)
Inability to complete unpaid work like chores around the house, shopping, etc 234 (63%)
Unable to keep up the walking pace with people of similar age as them 139 (37%)
Breathlessness keeps them from going on walks 80 (22%)
Breathlessness keeps them from going to meet family and friends 160 (43%)
Reduced overall ability to be as active as they would like 268 (72%)
Difficulty with carrying out paid work 194 (52%)
Missed at least a day of paid / unpaid work 178 (48%)
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A majority of the participants (n = 323, 87%) were interested in enrolling for a program that would alleviate their symptoms and help them to be more active. Those who were not keen in participating in such a program reasoned that they were unsure of being able to exercise (63%), were satisfied with their current activity levels (29%), did not have time (29%), or were worried about the potential costs of attending PR service (10%). Overall, 148 (40%) of participants had access to internet and 156 (42%) had access to a smart phone whereas 70 (19%) had access to a computer and 48 (13%) to an electronic tablet.

With regards to the mode of PR delivery (Figure 2), where participants could select multiple options, most participants favoured home based PR using a web-based digital app (n = 321, 84%) or a paper manual (n = 260, 70%) rather than supervised group-based models set in local community centres (n = 70, 19%) or in hospitals (n = 52, 14%). About 58% (n = 215) were willing to spend 1 h/day for the program, 119 (32%) selected “less than 30 min/day”, 30 (8%) and 7 (2%) showed willingness to spend over 1 h per day or more than 2 h per day respectively.

Figure 2.

Figure 2.

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Preferred mode of PR delivery for people living with CRDs.

Healthcare providers

Out of a total of 269 HCP invited to participate in the survey, 12 (4.5%) did not fit the inclusion criteria as they were not involved in the care of people living with CRD, and 50 (13%) HCPs did not respond to the survey. A total of 207 (77%) responded to the survey and 206 (77%) completed the responses which were analysed, comprising 128 (62%) general physicians, 47 (23%) specialist doctors and 31 (15%) physiotherapists with a mean ± SD work experience of 10 ± 9 years. Data from 124 (60%) HCPs were collected in person, 52 (25%) surveys were completed over telephone and 30 (15%) were completed online through Google forms. We also noted different care facilities where the HCPs belong, 107 (52%) were from private clinics, 79 (38%) from private hospitals and 20 (10%) were from public health facility.

On a scale of 0–10 where 0 = not at all and 10 = completely, the perceived understanding of eligibility criteria for PR among HCPs was 7 ± 3 and the feeling of preparedness to refer people with CRDs to PR was 7 ± 2. HCPs were affirmative that PR is ‘very much worthwhile’ (n = 165, 80%), whereas some thought it is a ‘little worthwhile’ (n = 35, 17%).

The MRC (Medical Research Council) dyspnoea score (n = 137, 67%), shortness of breath (n = 127, 62%), and reduced mobility owing to breathlessness (n = 108, 52%) were perceived by HCPs to be strong influencers in referring people with CRDs to PR (Figure 3). Other strong influencers included decreasing activity levels (n = 100, 49%), low exercise tolerance (n = 86, 41%) and poor self-management (n = 73, 35%). Anxiety among people with CRDs was not considered influential for a PR referral by 49 respondents (24%).

Figure 3.

Figure 3.

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Factors influencing Healthcare Providers’ decision to refer people living with CRDs to PR.

HCPs emphasized on patient related barriers like transportation issues (n = 103, 50%), distance to the PR class (n = 87,43%), timings of the sessions (n = 56, 27%). HCPs also perceived challenges regarding PR referral process (n = 51, 25%), individuals diagnosed with a CRD not fitting the acceptance criteria (n = 92,45%), presence of co-morbidities (n = 76, 37%) as deterrents for people with CRDs accepting a PR referral (Figure 4). They also reported lack of information on PR (n = 98, 48%) to be one of the decisive factors for non-referral of PR. Modes of communication preferred by the HCPs for referral were telephones (n = 163, 79%), emails (n = 115, 56%), letters (n = 41, 20%), and other modes like WhatsApp (n = 37, 18%).

Figure 4.

Figure 4.

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Factors influencing Healthcare Providers’ decision to not refer people living with CRDs to PR.

Factors showing readiness of HCPs for referring people with CRDs to PR were documented (Figure 5). Nearly half of the HCPs (n = 107, 52%) believed that PR referral was a part of their role. HCPs were keen on following up on PR outcomes of the referred people with CRDs (n = 74, 36%). HCPs also highlighted the need for training of colleagues on PR referral (n = 67, 33%).

Figure 5.

Figure 5.

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Readiness of HCPs for PR referrals.

Discussion

This is the first study conducted in India to exploring the interest, needs and challenges relating to referral and uptake to pulmonary rehabilitation, uniquely involving both groups of participants that is service providers and potential service users. Globally, there is advocacy for developing contextual and need-based PR models, and improve adherence among the PR participants.

The survey participants living with CRDs were willing to attend PR, as an intervention to help them manage their disease better, which corroborates with the findings of similar surveys in other LMICs like Sri Lanka (80%) and Uganda (92%).9,17 There is a substantial impact of CRDs on the functional capacity and resultant productivity and economic loss.18,19 In India, the biggest impact on productivity associated with CRDs comes from absenteeism at work, which was apparent in our data as well. PR can potentially improve economic productivity as the evidence from High Income Countries (HICs) suggests that it improves the functional limitations, reduces episodes of exacerbations and emergency hospitalizations.20–22 Owing to this inundating impact of the disease, most of the respondents may have been interested in participating in a disease management program that may help them alleviate their symptoms.

The participants in our study preferred a home-based program over hospital or community-based programs unlike in similar surveys in other LMICs like Uganda and Sri Lanka where centre based, group PR was preferred.9,17 The low uptake and adherence to PR among people living with CRDs is often attributed to the transportation issues to PR facilities, distance from the PR classes, poor mobility and costs of sessions. 13 In India, individuals are often accompanied by their caregivers or family members to healthcare facilities which also has a cost implication, as the accompanying person tends to lose their daily wage on that particular day.23,24 In order to overcome such barriers, remotely delivered PR, tele-rehabilitation, home-based or hybrid modes of PR have become a popular approach to delivering PR, 25 especially after the imposed COVID-19 pandemic restrictions. 26 As the data collection time period in our survey overlapped the COVID-19 pandemic, web-based and digital home PR programs may have been more appealing. Digital and tele-rehabilitation for chronic respiratory diseases has been demonstrated to be a feasible mode of delivery. 27 According to the National Family Health Survey 5 (2019-21) 97% urban and 92% rural households in India have a mobile phone device. 28 Even though, 40% of our survey participants had a smart-phone and internet access, they would be able to rely on their family members and peers in accessing healthcare information. Family members and peers have an indispensable role in utilization of digital platforms, especially in Indian households where joint living is more common than that in HICs. 29 The PR services are scarcely available in India and those available, are restricted to conventional in-person mode of delivery in tertiary care facilities in urban geographies. These findings warrant exploration and development of various PR models to improve the inclusivity of the services.

Most HCPs understand the worth of PR as well as their role in the PR referral and are keen on following up on the PR outcomes for people living with CRDs in their practice. They perceive to understand the PR referral criteria that includes breathlessness, activity limitation and functional disabilities. However, they also report to have a lack of in-depth information on PR. Co-morbidities were reported by most HCPs as a deterrent to refer eligible people to PR. Considering that people living with CRDs often report with multiple co-morbidities, PR should be designed to accommodate such individuals. 30 Also anxiety among people with CRDs was not considered as a strong influencer which may be attributed to lack of acknowledgement of mood disorders among people living with CRDs or the perceived benefits of PR in co-morbid mood disorders. 31 These factors demonstrate the need for education and in-depth training in PR especially around its formal structure, multidisciplinary team, benefits and practical approaches to build PR in their practice. The structure, facilities and referral pathways are crucial aspects of service development as this can impact patient safety and standard of care; for example, for patients on Long Term Oxygen Therapy, it is necessary that the facility where the patient is being referred to is compatible with the requirements or the doctor can refer the patient to a suitable PR centre. Creating locally relevant guidelines for PR, where they are currently unavailable in the Indian context and capacity building using standardized cascading training programs from well-known institutes and organizations is a priority. 32

Important operational concerns reported in this survey by the HCPs include lack of time to refer, lack of awareness about available and approachable direct service providers or referral pathways, have also been highlighted in prior studies in the HICs.33,34 Unavailability and inaccessibility of PR services in India is a huge concern despite the burden of CRDs. 7 In a multiplayer model of the Indian healthcare system, the private healthcare entities are accessed more than the public health system. There is a formal process and structure of the referral hierarchy in the public health system and this is not as water-tight in the private sector making the referral process difficult. Most private medical practitioners including specialists, work in small private office set-ups similar to out-patient facilities with a space constraint for inter-disciplinary setups or teams to operate, leading to dearth of holistic PR facilities. Even hospitals that have physiotherapy departments get most of the referrals only for orthopaedic or neurological rehabilitation. Most physiotherapists opt for orthopaedic, sports or other majors over cardio-respiratory or community rehabilitation upon graduation. 35 It is necessary to raise and support interdisciplinary networks for referrals, which will facilitate development of referral pathways and better utilize available resources. One of the limitations of this survey is that it is difficult to understand fully about the representation of the number of HCPs involved in the care of people living with CRDs to the number of HCP participating here, as there is a dearth of a validated document that gives a specific number of these practitioners. However, considering the gap in knowledge regarding the understanding of PR among HCPs, in the local context, this survey is a good starting point in bridging this gap.

Conclusion

The inclination towards remotely delivered PR among people living with CRDs and the potential barriers identified by HCP like transportation, PR timings and potential costs, warrants development of various models of PR to improve its availability inclusivity and accessibility. To overcome the barriers around the referral process, there is a need for capacity building, setting up of multidisciplinary networks and guidelines for referrals alongside development of PR models.

Acknowledgments

We would like to acknowledge Dr Jonathan Fuld, Addenbrookes Hospital, UK, who allowed us to modify his original survey questionnaire and who was part of the team that designed the HCW survey questionnaire for this study.

Footnotes

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the NIHR (17/63/20) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK government. Professor Singh is a NIHR Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.

ORCID iDs

Shruti D Sahasrabudhe https://orcid.org/0000-0001-9367-0115

Mark W Orme https://orcid.org/0000-0003-4678-6574

Ilaria Pina https://orcid.org/0000-0002-6294-5398

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