Prioritising primary care respiratory research needs: results from the 2020 International Primary Care Respiratory Group (IPCRG) global e-Delphi exercise.

Respiratory diseases remain a significant cause of global morbidity and mortality and primary care plays a central role in their prevention, diagnosis and management. An e-Delphi process was employed to identify and prioritise the current respiratory research needs of primary care health professionals worldwide. One hundred and twelve community-based physicians, nurses and other healthcare professionals from 27 high-, middle- and low-income countries suggested 608 initial research questions, reduced after evidence review by 27 academic experts to 176 questions covering diagnosis, management, monitoring, self-management and prognosis of asthma, COPD and other respiratory conditions (including infections, lung cancer, tobacco control, sleep apnoea). Forty-nine questions reached 80% consensus for importance. Cross-cutting themes identified were: a need for more effective training of primary care clinicians; evidence and guidelines specifically relevant to primary care, adaption for local and low-resource settings; empowerment of patients to improve self-management; and the role of the multidisciplinary healthcare team.

Introduction

Chronic respiratory diseases (CRDs) impose a significant burden on global health[1]. The Global Burden of Disease (GBD) Study 2019 suggested that respiratory conditions account for 7.7 million deaths per year[1]; CRD and respiratory infections (including tuberculosis) account for the third and fourth causes of death after cardiovascular disease and cancer[2,3]. Furthermore, the number of Disability Adjusted Life Years (DALYs) for CRD has increased by 20% since 1990[2,3]. Tobacco smoking, the leading cause of CRD, is the second most important risk factor for global disease burden while indoor and outdoor air pollution are included in the top ten risk factors[2]. Commentaries by the GBD highlight the gap between current policies, activity and burden and the importance of universal health coverage[3].

Primary care has a core role in the prevention, diagnosis and management of all respiratory diseases[4]; indeed, respiratory symptoms are the most common reason for primary care consultations[5]. However, significant evidence gaps remain, with a corresponding lack of evidence-based guidelines, quality standards and training to support primary care practice[5,6]. Progress is further challenged by the diversity of healthcare issues presented in primary care and the various models adopted for primary care worldwide[5]. Prioritising research needs helps guide researchers, research funders, and policymakers and will ultimately improve clinical guidelines and patient care globally[7]. Although relevant prioritisation studies exist[8,9], there is still a need for a systematic and transparent approach in the specific area of primary care respiratory research[7], and furthermore to ensure that the priorities are relevant to countries with different risk factor profiles and phases of development[10]. To date, there has been a general lack of investment in primary care respiratory research and an up-to-date specific needs statement will provide impetus to redress that balance[11].

The International Primary Care Respiratory Group (IPCRG) is a clinically-led charity that aims to promote research into the care, management and prevention of respiratory diseases in the community[12]. Its vision is a “world breathing and feeling well through universal access to right care”. Current membership includes 37 full and 24 associate member countries[12] representing an estimated 155,000 primary healthcare professionals worldwide from high-, middle- and low-income countries in Europe, Asia, North and South America, Australia, and Africa[13]. In 2010, the IPCRG published its first Research Needs Statement for primary care respiratory research, identifying 145 research questions within five domains: asthma, rhinitis, COPD, smoking and respiratory infections[6]. This was prioritised in 2012 through an e-Delphi exercise culminating in a final list of 62 questions[14]. Now, 8 years on, changing needs and contexts require an update.

In this paper, we provide a new agenda for primary care respiratory research, obtaining consensus on the most important respiratory research questions from the perspective of practising primary care healthcare professionals representing a wide range of backgrounds and settings worldwide.

Methods

Overview of the e-Delphi processes

An e-Delphi exercise with three rounds was undertaken to build consensus on the most important priorities for respiratory research in primary care[15,16] (Fig. 1). It commenced in May 2019 and was completed in August 2020 and included research questions suggested by practising primary healthcare professionals from across the world, with input from a panel of experts to verify and refine these questions, and two further rounds to rate the priorities. In addition, the open comments from the first Delphi round were analysed qualitatively to identify cross-cutting themes.

Fig. 1

Flow diagram of the research prioritisation process.

Recruitment

National coordinators from all IPCRG member countries were asked to purposively select and invite (by email) clinicians (doctors, nurses and any other healthcare professionals) working with respiratory patients in community settings in their countries to represent a broad range of views and experience. Specific inclusion criteria included the ability to complete online surveys in English and working in/with primary care settings to deliver care to patients with respiratory conditions.

e-Delphi 1: initial open-ended questionnaire

All data were collected through the Jisc Online Survey tool[17] The initial questionnaire included three open questions seeking opinions on the most common respiratory conditions encountered in their clinical practice; the most clinically important conditions (in terms of burden and impact) and to suggest research questions relevant to their stated conditions for which they perceived evidence to be lacking. Participants were asked to consider the following domains: diagnosis, management, monitoring, self-management and prognosis. This questionnaire was piloted for clarity and ease of use by members of the IPCRG Research Committee and amended accordingly.

1. What are the most common respiratory conditions encountered in your clinical practice? Please list 5–8 conditions.

2. Among those, which conditions are the most clinically important in your daily clinical practice (please consider the burden and impact of these conditions)?

3. Please list 10 questions relevant to the above conditions that you would like to see answered but currently cannot find enough evidence for them in the literature? Please carefully consider the following areas: diagnosis, management, monitoring, self-management and prognosis.

Evidence verification stage

To ensure that the questions suggested by participants reflected genuine evidence gaps and were answerable as research questions, 27 academic experts (Supplementary Table 1) with topic-specific expertise related to primary care, associated with the IPCRG, reviewed and verified evidence against the questions suggested by participants, refining and grouping similar questions, removing duplicates and adding questions where appropriate (including referring to unanswered questions from the previous prioritisation exercise[5,14]) to produce a final list of relevant and answerable questions. Experts were provided with instructions and a standardised proforma to produce the modified final questions. Additionally, they were asked to provide justification and evidence from the literature in support of their final list of questions.

e-Delphi round 2: first rating stage

All participants from the e-Delphi round 1 were invited to rate each question from the final list of research questions through two e-Delphi rating stages. During the first rating stage, participants rated each question on a 5-point Likert scale from 1 to 5 based on clinical importance (1 = Not at all important to 5 = Very important).

e-Delphi round 3: second rating stage

All participants from the e-Delphi round 2 were invited to re-rate the same list of questions from the previous round. At this stage, each participant was asked to consider the mean score, their individual score and any justification/comments provided by the participants on the questions in e-Delphi round 2, before re-rating the questions. Consensus for the e-Delphi was defined in round 3 for any question when 80% or more of participants rated it as 4 or 5 (important or very important).

Statistical analysis

Descriptive statistics were used to present the characteristics of participants and responses. Treemap charts were used to present the relative proportions of conditions mentioned in the questions. All questions were ranked by consensus score within three main topics: Asthma, COPD and Other, and within each topic, further ranked within 5 domains: prevention, diagnosis, management, self-management, monitoring and prognosis. The mean rating score was used in the final ranking to separate questions with the same consensus score. In the few cases where the consensus score and the mean rank score were identical, questions were listed in alphabetical order. All analyses were carried out using the analysis functions in the Jisc Online Survey tool and Microsoft Excel.

In-depth qualitative analysis of cross-cutting themes from the initial questionnaire

The qualitative analysis focussed on the raw open-ended research questions received in the initial questionnaire and aimed to highlight cross-cutting needs, issues and possible solutions relevant to the care of respiratory patients in primary care. Thematic analysis was carried out by AAA using NVIVO 12 software. Three other authors (RJ, PA, KL) independently reviewed the data, which was followed by a discussion between these four authors to reach an agreement on the final themes.

Ethics

This study was approved by the University of Birmingham Ethics Committee (ERN_19-0303B). The study complied with all relevant ethical regulations for work with human participants, and informed consent was obtained from all participants at the start of the online survey.

Table 1

Demographic characteristics of participants for e-Delphi rounds 1, 2 and 3.

e-Delphi round	Round 1	Round 2	Round 3
Characteristic	N (%)	N (%)	N (%)
Number of participants	112 (100.0)	52 (100.0)	34 (100.0)
Gender
Male	47 (42.0)	21 (40.4)	12 (35.0)
Female	65 (58.0)	31 (59.6)	22 (65.0)
Age in years
25–34	28 (25.0)	14 (27.0)	9 (26.5)
35–44	36 (32.1)	17 (32.7)	10 (29.4)
45–54	26 (23.2)	10 (19.2)	9 (26.5)
55–64	18 (16.1)	9 (17.3)	5 (14.7)
65 and over	4 (3.6)	2 (3.8)	1 (2.9)
Role
Doctor: Family Physician	65 (58.0)	25 (48.2)	14 (41.0)
Doctor: Hospital Doctor	13 (11.7)	6 (11.5)	3 (8.8)
Doctor: Other	3 (2.7)	2 (3.8)	2 (6.0)
Doctor: Clinician Researcher	12 (10.7)	5 (9.6)	3 (8.8)
Nurse: Hospital Nurse	3 (2.7)	4 (7.7)	4 (11.8)
Nurse: Community Nurse	2 (1.8)	0 (0.0)	0 (0.0)
Nurse: Other	6 (5.4)	5 (9.6)	4 (11.8)
Other Healthcare Worker	8 (7.1)	5 (9.6)	4 (11.8)
Years of experience
<5 years	22 (19.6)	11 (21.3)	7 (20.5)
5–10 years	24 (21.5)	7 (13.4)	2 (6.0)
>10 years	66 (58.9)	34 (65.3)	25 (73.5)
Additional respiratory qualifications or special interest
Yes	72 (64.3)	35 (67.3)	21 (62.0)
No	40 (35.7)	17 (32.7)	13 (38.0)
Work setting
Hospital	26 (23.2)	15 (29.0)	11 (32.4)
Primary care/ community	74 (66.1)	29 (55.7)	16 (47.1)
Other	12 (10.7)	8 (15.3)	7 (20.5)
Region
Africa	14 (12.5)	5 (9.7)	4 (11.8)
Asia	37 (33.0)	21 (40.4)	12 (35.3)
Europe	46 (41.1)	18 (34.6)	12 (35.3)
North America	3 (2.7)	2 (3.8)	1 (2.9)
Oceania	3 (2.7)	2 (3.8)	1 (2.9)
South America	9 (8.0)	4 (7.7)	4 (11.8)
Country classificationa
High income	45 (40.2)	23 (44.2)	15 (44.1)
Upper-middle income	34 (30.4)	12 (23.0)	10 (29.4)
Lower-middle income	24 (21.4)	14 (27.0)	7 (20.5)
Low income	(8.0)	3 (5.8)	2 (6.0)

aSource: World Bank Country Classifications by income level: 2018–2019[26].

Table 2

Top 10 primary care research respiratory priorities.

Question	Category	Consensus (%)a	Mean rating 0–5
What is the best way to manage chronic/ persistent cough in primary care?	Chronic/ persistent cough management	100	4.71
What are the best ways to monitor asthma in primary care?	Asthma monitoring	100	4.44
What steps could be taken to prevent exacerbations and progression of asthma?	Asthma management	97.1	4.38
How can brief advice be used more effectively to increase motivation to quit, and what elements are most efficient for a busy primary care practitioner?	Tobacco Control management	97.1	4.38
How should we best manage COPD in patients with cardiovascular diseases, arrhythmias and uncontrolled hypertension?	COPD management	97	4.35
What are the most effective strategies for ensuring sustained good inhaler techniques among asthma patients?	Asthma self-management	94.2	4.38
What methods could be used to enhance adherence to asthma controller therapy?	Asthma management	94.1	4.5
How could we improve COPD ‘patients’ adherence to inhalers? Which are the best methods to teach about inhaler use and how can we incorporate them in daily clinical practice?	COPD self-management	94.1	4.5
What is the best way to engage people with asthma in self-management?	Asthma self-management	94.1	4.44
How can we best educate healthcare professionals to improve the early recognition and diagnosis of COPD?	COPD diagnosis	94.1	4.44

Questions rated on a Likert scale (0: not important, –5: very important).

a% rating 4 (important) or 5 (very important).

Table 3

Consensus on the research priorities in asthma.

	Rank	Question	Consensus (%)a	Mean rating
Asthma
Diagnosis	1	How could asthma be diagnosed earlier in primary care?	88.3	4.26
	2	How could asthma be diagnosed in settings with limited availability of diagnostic tests?	85.3	4.38
	3	What practical algorithms could distinguish between recurrent wheeze/ asthma and other acute respiratory diseases for young children?	85.3	4.24
Management	1	What steps could be taken to prevent exacerbations and progression of asthma?	97.1	4.38
	2	What methods could be used to enhance adherence to asthma controller therapy?	94.1	4.5
	3	What is the most effective management for acute exacerbation of asthma in children?	91.1	4.29
	4	How could guidelines be adapted to manage asthma in Lower-Middle-Income Countries (LMICs)?	88.2	4.35
	5	What is the role of intermittent therapy, such as SABA, ICS/SABA and ICS/LABA, in the management of asthma?	88.2	4.26
	6	When and how should asthmatic patients be stepped down from ICS?	85.3	4.09
	7	What is the best way to select drug therapy in children with asthma?	82.3	4.12
Monitoring	1	What are the best ways to monitor asthma in primary care?	100	4.44
	2	What are the best clinical tools to monitor asthmatic and allergic children in primary care in LMICs?	82.3	4.18
Self-management	1	What are the most effective strategies for ensuring sustained good inhaler techniques among asthma patients?	94.2	4.38
	2-a	What is the best way to engage people with asthma in self-management?	94.1	4.44
	2-b	What is the best way to support patients to improve their adherence to asthma medications?	94.1	4.44
	4	What are the best ways for healthcare professionals to engage patients in supported self-management and empower them to take control of their asthma?	94.1	4.24
	5	What are ‘physicians’ barriers to supporting patients to effectively self-manage their asthma in low-resource settings?	88.3	4.15
	6	What educational interventions are effective and cost-effective for children /families with asthma?	88.2	4.21
	7	What strategies/adaptations can help empower people with limited health literacy to effectively self-manage their asthma?	85.3	4.09

Questions rated on a Likert scale (0: not important, –5: very important).

SABA short-acting inhaled beta-agonists, ICS inhaled corticosteroids, LABA long-acting beta-agonists.

a% rating 4 (important) or 5 (very important).

Table 4

Consensus on the research priorities in COPD.

	Rank	Question	Consensus (%)a	Mean rating
COPD
Diagnosis	1	How can we best educate healthcare professionals to improve the early recognition and diagnosis of COPD?	94.1	4.44
	2	How should we best diagnose COPD in settings where good quality spirometry is not available or not affordable?	91.2	4.32
	3	What are the most cost-effective and efficient approaches for identifying COPD, especially in low-resource settings?	88.3	4.26
	4	How effective are public awareness/education campaigns to improve awareness and earlier diagnosis of COPD?	82.3	4.26
Management	1	How should we best manage COPD in patients with cardiovascular diseases, arrhythmias and uncontrolled hypertension?	97.0	4.35
	2	How to tailor the current COPD management guidelines to suit those with comorbidities?	94.1	4.38
	3	How can we manage COPD patients with comorbidities in primary care using a personalised approach to reduce adverse reactions and limit disease progression?	91.2	4.38
	4	What is the optimal strategy for identifying and treating COPD exacerbations in primary care?	91.2	4.35
	5	Does shared care between primary care physicians and specialists improve the management of COPD patients and reduce exacerbations?	88.3	4.21
	6	How best could COPD treatments be tailored to suit different COPD phenotypes?	88.3	4.15
	7	How should COPD be managed in low- and middle-income countries, including rural community settings?	88.2	4.18
	8	How do primary care clinicians use spirometry findings to inform the ongoing management of COPD?	85.3	4.03
Monitoring	1	How do primary care clinicians use measures of disease progression in COPD to inform the care they provide? What is the impact of using measures of disease progression on quality of care and clinical outcomes?	88.3	4.15
Self-management	1	How could we improve ‘patients’ adherence to inhalers? Which are the best methods to teach about inhaler use and how can we incorporate them in daily clinical practice?	94.1	4.5
	2	How cost-effective are e-Health interventions, mobile and online applications (including wearables) in self-monitoring, symptoms control and adherence to medications in patients with COPD?	91.2	4.29
	3	What are the best engaging and supporting strategies for healthcare professionals to help improve self-management of COPD?	88.2	4.24
Prognosis	1	Is the early identification of COPD beneficial to patients in the long term?	85.3	4.32

Questions rated on a Likert scale (0, not important –5, very important).

a% rating 4 (important) or 5 (very important).

Table 5

Consensus on the research priorities in other respiratory conditions.

	Topic	Rank	Question	Consensus (%)a	Mean rating
Other respiratory conditions
Diagnosis	TB	1	What are the best methods to increase detection of tuberculosis cases in primary healthcare or at the community level?	91.2	4.21
	Allergic rhinitis and other allergic conditions	2	What tools could help the primary care clinician differentiate between allergic and non-allergic rhinitis, rhinosinusitis, common cold and other clinically similar conditions?	88.2	4.24
	Infections in primary care	3	What are the best tools to help in triaging patients with respiratory infections to guide the use of antibiotics in community settings?	85.3	4.24
	Lung cancer in primary care	4-a	What is the best diagnostic algorithm for lung cancer for helping primary care doctors identify those at increased risk?	85.3	4.15
	Sleep apnoea	4-b	What is the best-validated screening tool for sleep-related breathing disorders, especially Obstructive Sleep Apnoea in the primary care setting?	85.3	4.15
Management	Other respiratory-related questions	1	What is the best way to manage chronic/ persistent cough in primary care?	100	4.71
	Tobacco control	2	How can brief advice be used more effectively to increase motivation to quit, and what elements are most efficient for a busy primary care practitioner?	97.1	4.38
	Tobacco control	3	What combination of interventions (e.g. brief advice, cost-free medications, adjunct counselling) are most effective for increasing patient quit rates in primary care practice?	91.2	4.32
	Tobacco control	4	What are the most effective models (including primary healthcare or specialist smoking cessation teams) for providing smoking cessation support services in different cultural and/or socioeconomic settings?	91.2	4.26
	Tobacco control	5	How can primary care clinicians in different countries be made more aware of strategies to prevent smoking in young people and pregnant women?	88.3	4.15
Monitoring	Tobacco control	1	How effective is monitoring patients following a quit attempt? What questions or simple instruments could be used to assess the risk of relapse in primary care consultations?	91.2	4.21
Self-management	Other respiratory-related questions	1	What are the most effective strategies to improve self-management of chronic respiratory diseases in primary care?	88.2	4.24
	Other respiratory-related questions	2	What are the most effective strategies to improve shared decisions and adherence when managing chronic lung diseases in primary care?	82.3	4.03

Questions rated on a Likert scale (0, not important –5, very important).

a% rating 4 (important) or 5 (very important).

Table 6

Cross-cutting themes from qualitative analysis of open-ended round 1 questions.

Theme	Comments	Example of question received
Lack of awareness of published evidence regarding respiratory disease management	Many participants demonstrated a lack of knowledge of the available evidence regarding screening, diagnosing, and managing respiratory conditions in primary care	“What is the best way to diagnose Asthma?”
The need for better evidence on prevention, diagnosis and treatment of respiratory conditions in primary care	Some questions suggested a genuine gap in evidence and guidelines relevant to specific topics	“What is the role of spirometry in the diagnosis of asthma at different age groups?“
Need for information applicable to local healthcare provision/resources	Participants indicated a need for evidence, guidelines and epidemiological studies that directly related to their local populations.	“What are the best feasible and effective asthma management guidelines that are appropriate for resource-poor settings?“
Simple and accessible tests for screening, diagnosing and monitoring	A large proportion of suggested research questions demonstrated a need to explore or develop tests that are simple and feasible to perform in primary care to diagnose or manage respiratory conditions	“How could point-of-care testing be used effectively in screening for COPD?“
Effective approaches to empower patients	There was a significant emphasis on the need to explore tools and methods that could be used in primary care to empower patients with respiratory conditions in managing their own conditions.	“What are the best self-management strategies for patients with chronic cough?“
Role of multidisciplinary healthcare teams	Participants expressed interest in exploring the role of various healthcare professionals in the diagnosis, monitoring and management of respiratory conditions in primary care.	“What is the role of community pharmacists in improving the prognosis of COPD patients?“