A qualitative assessment of the pulmonary rehabilitation decision-making needs of patients living with COPD.

Pulmonary rehabilitation (PR) is highly evidenced but underutilised in patients living with chronic obstructive pulmonary disease (COPD). A menu of centre and home-based programmes is available to facilitate uptake but is not routinely offered. An appraisal of the current PR referral approach compared to a menu-based approach was warranted to explore the decision-making needs of patients living with COPD when considering a referral to PR. Face-to-face or telephone, semi-structured interviews were conducted with patients diagnosed with COPD and referred to PR and referring HCPs. Interviews were audio-recorded, transcribed verbatim and analysed using the enhanced critical incident technique. 14 HCPs and 11 patients were interviewed (n = 25). Interview data generated 276 critical incidents which informed 28 categories (30 sub-categories). Five high-level themes captured patients' decision-making needs for PR: Understanding COPD, understanding PR, perceived ability to access PR, a desire to accept PR, and supporting the offer. A menu-based approach would further support patients' PR decision-making, however, insufficient knowledge of the programmes would limit its perceived feasibility and acceptability. The development of shared decision making interventions (e.g., a patient decision aid) to elicit patient-centred, meaningful discussions about the menu is suggested.

Introduction

Chronic obstructive pulmonary disease (COPD) is a progressive respiratory condition characterised by chronic dyspnoea, cough, wheeze and excess sputum, punctuated by periods of acute exacerbation whereby symptoms worsen and rescue medication or hospitalisation is required[1].

Optimal management of COPD includes completion of pulmonary rehabilitation (PR); a behaviour change intervention of progressive exercise and disease management education[2] which improves dyspnoea, emotional functioning, self-efficacy and exercise capacity[3]. Traditionally, it is delivered as a supervised package of care over 6–8 weeks with two supervised sessions a week. However, despite its significant physical and psychological health benefits, uptake, attendance, and completion of the course is low[4].

Patients who decline PR report a lack of transport options, perceived benefit, influence from healthcare professionals (HCPs), session times and disruption to their established routines as reasons not to attend[4-6]. In contrast, little evidence exists on the facilitators or improvements that can support patients’ decision-making and acceptance of PR. To date, the presence of social support, HCP support, motivation, self-efficacy and attributing value to PR has been cited as important[7].

In response to these challenges and compounded by the onset of the Coronavirus Disease 2019 (Covid-19) pandemic, most PR services sought remote options to allow them to maintain a service. Most were developed in response to the pandemic context, but a few were developed and evaluated as options pre-pandemic (e.g. a standardised COPD self-management manual with remote support from HCPs (SPACE for COPD)[8,9], an online programme involving exercise and education videos (my-PR)[10]). What is unclear is how these programmes are integrated into routine care and whether the choice of mode of delivery explicitly involves the patient. For example, SPACE for COPD is not offered to all referred patients, but often only suggested if the patient vocalises challenges in attending centre-based PR at the time of their PR initial assessment.

This approach is incongruent with shared decision-making; a core component of patient-centred care. The NICE guidelines describe shared decision-making as a process of HCPs and patients working together to make individualised choices about treatment and healthcare options[11]. This collaborative process ensures patients feel empowered, fully informed and can engage in key decisions about their health. Evidence shows that engagement in shared decision-making improves individuals treatment adherence, self-management and overall healthcare outcomes[12].

To understand the role of shared decision-making within the offer of PR we sought to explore the PR decision-making needs of patients living with COPD to identify ways to support their PR decision-making and thereby their uptake to PR.

In this study, we conducted an exploratory qualitative analysis. Our research objectives were to understand:

Patient and HCP perceptions of patients’ decision-making needs using the current PR approach: How do they perceive this approach with regard to its barriers, facilitators, and improvements?

Patient and HCP perceptions of patients’ decision-making needs using a menu-based approach: How do they perceive this approach with regard to its barriers, facilitators, and improvements?

Methods

Study design

To capture a rich understanding of the factors influencing patients’ decision-making for PR, we utilised qualitative research methods. This allowed in-depth data collection specifically pertinent to individual participants[13].

Setting

We recruited participants from our local PR service. Patients were those referred to the service and HCPs were those who referred to the service from primary and secondary care sites.

Participant selection

We used the proportionate allocation method of stratified sampling to recruit participants representative of our service. For patients, our sampling considered referral setting (e.g., inpatient, outpatient, GP setting) and residence (e.g. inner-city, urban). For HCPs, our sampling considered referral setting (e.g., primary care, secondary care) and site location (e.g. inner-city, urban).

Patients were eligible if they had a confirmed diagnosis of COPD (post bronchodilator FEV1/FVC ratio <70%), had received a PR referral and had not previously undertaken PR. This allowed reflection upon the decision-making processes for PR rather than prior experience of a PR programme. HCPs were eligible if they had been actively referring patients to the PR service for a minimum of 1 year. This ensured adequate experience to reflect upon.

We selected a sample size of 15 participants (e.g. 6–7 patients and 8–9 HCP), which is congruent with expert opinion on a minimum data set for qualitative research[14-16]. Throughout data collection, we assessed data saturation and continued recruitment until this was met, as per the analytic protocol, to ensure relevant contextual factors were captured.

Data collection

Following participant consent, the first author, a Health Psychology Ph.D. student working in the field of respiratory research, collected baseline contextual data and conducted semi-structured interviews face to face or via telephone. Following the Covid-19 pandemic, we added additional contextual questions to the interview guides (Supplementary materials 1 and 2) and continued beyond the proposed sample size. Each interview was digitally recorded and transcribed verbatim. Transcripts were coded with an ID number and a ‘P’ to denote patient or ‘H’ to denote HCP. Data collection began in July 2019 and ended in October 2020. Interviews lasted between 19 and 45 min.

Interviews explored barriers, facilitators and improvements for the current PR approach (i.e. the offer of centre-based PR and possibly other options) compared to a newly proposed menu-based approach (i.e. the equal offer of: centre-based PR, home-based PR involving a self-guided manual and telephone support (SPACE for COPD)[8,9], home-based PR involving a web-based manual and online and telephone support[10] and for patients with fewer limitations: Active Lifestyles[17] and Breathe Easy[18]). After exploration of the current approach, interviews were paused and participants read through a menu-based approach prompt (Supplementary material 3; telephone interview participants were sent a copy of the prompt in the post ahead of the interview). Following the opportunity to ask questions, the recording resumed exploring participant perceptions of this. A reflexive log[19] was maintained prior to and throughout data collection to ensure data transparency.

Data analysis

We conducted inductive data analysis using the Enhanced Critical Incident Technique[20]. This method identifies items, known as critical incidents, which make a significant positive (helping), negative (hindering), or future recommendation (wish list) contribution to the topic of interest. For example, and as previously highlighted, patients often cite a lack of transport options as a hinderance to their acceptance of PR. Here the hindering critical incident is ‘a lack of transport options’.

The first author extracted the helping, hindering and wish list critical incidents from the first transcript and grouped them thematically into categories. The remaining transcripts were analysed and critical incidents were placed into existing categories, or if incongruent, new categories were developed. The analysis continued iteratively until categories became specific and robust. To facilitate presentation of the results the categories were grouped into high-level themes.

The Enhanced Critical Incident Techniques’ nine credibility checks guided this process (Supplementary material 4). One check included the calculation of participation rates (i.e. the proportion of participants who contributed to each category), two included independent analysis by two additional authors (a Respiratory Ph.D. student and a Health Psychologist), one involved the verification of categories and quotes with participants and one involved the verification and saturation of categories with academic experts (an expert in the Enhanced Critical Incident Technique and an expert in Pulmonary Rehabilitation).

Ethical approval

We received ethical approval by East Midlands—Leicester South Research Ethics Committee (REC: 17/EM/0156), the Health Research Authority and the research site. The trial is registered on Clinical Trials.gov (Identifier: NCT04990180). Participants provided written informed consent.

Table 1

Participant demographics.

HCPs	COPD patients
N = 14(56)	N = 11(44)
Gender (% female): 10(71)	Gender (female): 4(36)
Age: 42.4(26–57)	Age: 66.9(37–86)
Professions	Age at diagnosis: 62.2(37–83)
Nurse: 7(50)	Ethnicity
Specialist COPD Nurse: 2(14)	White British: 11(100)
Physiotherapist: 1(7)	No. of years diagnosed: 4.7(0–15)
General practitioner: 3(21)
UHL Doctor: 1(7)
Time in current job role: 6.2(1–20)
Site location	Residence
Inner city: 9(64)	Inner city: 5(45)
Urban: 5(36)	Urban: 6 (55)
Referral setting	Referral site
Primary care: 8(57)	Inpatient: 2(18)
Secondary care: 6(43)	Outpatient: 6(55)
	GP practice: 3(27)

N(%) or mean(range).

Table 2

Understanding COPD.

Frame of reference (current PR/menu-based approach pathway) and Item type	Participation rate (%)	Category	Sub-category
Current; hindering	28	Knowledge of COPD management	Patient knowledge AB05P: “It’s got worse since March. When I had that first [exacerbation], I’d left it because I didn’t realise that you could get the steroids for it or anything.” HCP knowledge AB12H: “I asked [my colleagues] to put their hands up—I asked them the question Would you prefer to have a heart attack or infective exacerbation of COPD?’ And loads of people said infective exacerbation of COPD, and these are people that treat patients with COPD and heart attack all the time. And they didn’t even know that you’ve got a higher mortality risk with an infective exacerbation so I think as [healthcare] professionals we don’t know therefore the patients don’t know.” Knowledge within society AB08P: “…when you tell somebody that you’ve got COPD and they say ‘What do you mean?’ ‘Well you’ve heard of asthma, it’s the next bit up.’ ‘Eh!’ Unless they’re medical people other people have never heard of it. Nor had I til I got it, but there you go.”
Current; Wish list	36	Building knowledge of COPD and self-management AB01H: “I think anyone who is given that diagnosis should have to go through a programme and I know they perhaps do not need an exercise programme at that point but it’s almost like they need something like an education programme.”

Table 3

Understanding PR.

Frame of reference (current PR/menu-based approach pathway) and Item type	Participation rate (%)	Category	Sub-category
Current; Hindering	96	A patient’s receptiveness	A patient’s literacy skills AB02P: “You see to read a manual for me it would send me to sleep. I would be far better to talk to somebody like you and even if it’s in a group environment like sitting at a desk and just listening to somebody give a lecture. I would take more interest and I’d keep more awake doing that than I would be trying to read for myself. And probably not understanding what I was reading anyway.”
Current; Hindering	76	Insufficient knowledge of PR	Insufficient knowledge of HCPs AB17H: “I think probably a lot of people, me included, just wing it and you’ll speak to your boss because that’s what tends to happen in trainee clinics, ‘So I’ve seen this patient’ and you go through everything and then your boss will say ‘Refer them to pulmonary rehab’ and then you think ‘They’re gonna ask me about it, I dunno what that is’ so you Google it and you get a very, very basic superficial understanding of what it is enough to just say this is what it is.” Insufficient knowledge within society AB01H: “I think we take it for granted that everybody knows that [PR] exists… unless you’re in respiratory I don’t think it’s a common theme really.”
Menu; Hindering	44	Information overload AB10P: “Well having all this choice, I really don’t know what’s the best. I mean, I’d sooner somebody tell me ‘You’re doing that…’ That’s cos I really don’t understand my problem.”
Menu; Hindering	36	Insufficient knowledge of the menu of PR programmes AB02P: “I’m not fond of information overload, but I’m equally not fond of not knowing at all. Therefore something in between is very useful and I’m finding this conversation very useful from that point of view.”
Current; Helping	48	HCP engagement in PR	HCP knowledge, belief and experience of PR AB11H: “I think if [healthcare professionals] actually take part in a session, particularly if you can see patients that you’ve perhaps referred in, you actually get a much better flavour of what it is so that when you’re talking to patients about it you can make it seem much more true to how it actually is delivered.”
Current; Helping	56	Building the identity of PR for patients AB01H: “…we had already adopted this approach several years ago… ‘with regards to smoking it’s not an option, your lungs are telling you something, you’ve had a moment in time that your body’s not coping with the breathlessness so this is what you need to do to stop this happening’. And again with the rehab so we’ve introduced to say it’s an opt out… ‘so as part of your recovery we advise you that you need to come and do a pulmonary rehab programme because we know it’s gonna improve your breathlessness and if you don’t do it we know that the chances are you’re gonna become more breathless and more limited in what you can do each time you have a chest infection.’”
Menu; Helping	24	Building awareness of PR programmes AB15H: “I think sometimes it’s quite nice, even if it’s a bit of written information that they have, just to ‘Have a little think about it cos there are various ways of doing this. And see if there’s anything there that you think would be of more use to you than another.’ And then they can ask the appropriate questions.”
Current: Wish list	44	Raising awareness of PR AB11H: “I think we ought to call it something a bit more user friendly. Pulmonary rehabilitation, you think of drugs and alcohol. That’s what patients envisage as well and I think they don’t really understand what pulmonary means so I think that would really help. Calling it something different.”
Menu; Wish list	36	Development and dissemination of promotional materials for the menu of PR options AB12H: “So perhaps having a cue card, so home-based and community-based pulmonary rehab, have one side—for a professional—have one side which explains what it is in plain language that you might use with a patient and then on the back have maybe like, you know, ‘It’s highly supported by evidence, the last Cochrane Review said this’. Like just one or two statement that really give you confidence.”

Table 4

Perceived ability to access PR.

Frame of reference (current PR/menu-based approach pathway) and Item type	Participation rate (%)	Category	Sub-category
Current; Hindering	96	A patient’s receptiveness	A patient’s social circumstances AB12H: “COPD is a poor person’s disease and because of that you’ve got all the health economics and the kind of sociology all wrapped up in that… These patients probably have a lifetime of not accessing healthcare and this is just another thing for them not to access.”
Current; Hindering	84	Constraints of the PR service	Constraints of PR delivery AB14H: “I think that’s the biggest thing, the point at which you introduce it, the point at which they’re able to access it can be a barrier in itself. We can refer somebody, they can be offered a place that gap can change their motivation and the factors that will make them decide are they going to go or are they not.” Constraints of PR referral process AB17H: “Knowing who does the referral always used to be a problem. It’s difficult when you’re a trainee and you rotate round cos you get used to one way… in some hospitals I’ve worked in it has to be a primary care referral so you would write back to the GP and ask the GP to refer them. And then it would seem like either the GP hadn’t done it or the patient didn’t want to go but would say that they’d never been sent. So you would never really know cos you didn’t have access to any of the primary care records. And then when you work in a new centre you don’t really know who the person is, so you kind of write these letters like ‘Dear…’ to whoever ‘…Please [put name in] can you refer this patient for pulmonary rehab…’ so it’s probably just knowing who the person in your trust is…”
Current; Hindering	40	Constraints of the healthcare service	The barrier of time AB05P: “I think [HCPs’ are] so limited for time. You go in there and they haven’t got time to speak to you let alone anything else.”
Menu; Hindering	28	Constraints experienced by the healthcare service	Time AB04H: “I think if we are resourced well enough to spend half an hour for a COPD review then I think it’s possible… So whilst this is really positive, talking through all these options takes time and I think that’s your biggest factor here in what would stop a clinician in primary care from sharing all of this.”
Current; Helping	64	Having PR programmes for all	PR design and delivery AB02P: “…not everyone wants to come to hospital twice a week…they prefer to work from home. I’m the other way round, I had an office-based job and I enjoyed going to the office each day which is how I would view this rather than trying to get up in the morning as my son-in-law does and he works 100% from home on his job. Well I couldn’t do it, I’d find other things to do…” PR accessibility AB14H: “…our local rehab programme, that’s specifically pulmonary, happens at a local village hall. So, it’s in the adjacent village and I would say probably that most of our patients who attend pulmonary rehab, not exclusively but most of them, would choose to go to that venue because of the locality, because it’s geographically easier for them… familiarity of the people who might be there and for getting there.”
Current; Helping	32	Valued support	Support from family and peers to access PR Interviewer: “You said you received a letter?” AB22P: “Well I looked at the letter with my son and he said ‘Go for it Mam,’ so I filled it in and he posted it in the letterbox.”
Current; Helping	32	Engaging in problem solving with patients AB14H: “You get people that say they don’t like working in groups. But again you’ve got the alternatives, and that you can play to your advantage. Cos sometimes people say that thinking ‘well I’m out of jail…’ So they can say ‘Oh I don’t like working in groups,’ ‘Oh well if you don’t like working in a group, maybe you’d be interested in this programme you can do yourself at home. We’ll support you…’ So, sometimes people say it thinking it’s an out, but actually it’s an in. So yeah [we] can turn it around.”
Current; Helping	32	Having a targeted approach AB17H: “If you’re trying to say, ‘Look you’ve got this symptom, it’s not responded to all of these other things you’ve tried. I really think that there’s good evidence that this is something that’s gonna get better with physio or with rehab’ then they’d be a bit more inclined to do it and they will usually try it.”
Menu; Helping	28	Engaging in problem solving AB07H: “’If it’s not going to work with you coming into the classes here to do it, well can we get you closer to home? Can we get classes closer to home? Are you savvy enough to do it online?’ You know, rehab has evolved so much over the last 15 years… there’s lots of opportunities to involve patients some way in a rehab programme.”
Menu; Helping	88	Facilitating choice AB06P: “You’ve made it available to me. I can’t drive, I’m working full time and it’s available.”
Current; Wish list	72	Improving access to PR	Improve how PR is delivered AB19H: “I just want [there] to be an easier way to do it really. It would be good if there was something in-house either onsite or locally because people are very, very reluctant to go to the hospital or somewhere further.” Improve the PR referral pathway AB03H: “…it could even pop up, if the GP is thinking of referring to a Respiratory Consultant for advice with COPD, you know ‘Have you considered pulmonary rehab instead?’ Something like that and you can catch more patients.”
Menu; Wish list	56	Developing a PR service for all	Continue to develop the service AB25P: “Six months is a long time, do you know what I mean? It’s long enough but sometimes it might not be long enough for some people… It’s like, with myself, I’d just fool myself that I’m doing okay and I’m not… I don’t work cos of my disabilities and I can’t afford a personal trainer. Interviewer: Yeah. So you need that extra step… longer membership at the gym or another programme type thing? AB25: Yeah.”

Table 5

A desire to accept PR.

Frame of reference (current PR/menu-based approach pathway) and Item type	Participation rate (%)	Category	Sub-category
Current; Hindering	96	A patient’s receptiveness	A patient’s beliefs AB07H: “Patients, particularly with COPD, are really hard on themselves. ‘I’ve smoked, I deserve it’ or ‘I smoked, I didn’t know…’ they almost apologise sometimes for ‘Well I tried rehab before. I don’t want to waste anybody more resources.’” A patient’s health and their experience of healthcare AB01H: “…when you’re feeling unwell in hospital the last thing you want to think about [is PR] and I think that’s always been our barrier that we’re approaching people that are feeling breathless and terrible and they don’t want to think about anything.”
Current; Helping	56	Making PR meaningful to patients AB01H: “I’ve told that story lots of times about the patient that couldn’t walk for 2 min and [after PR] could walk for 15 min. And you can see sort of a lightbulb… people thinking ‘Well you know what I can only walk for 2 min.”
Current; Helping	60	Patient receptiveness to PR referrals AB09P: “I’ve got a brother in law who’s about two years older than me and he’s had COPD, well emphysema same as me for about four years, and he’s never attempted to do anything about it. He’s just sort of gone down and down and down with it. I mean now he’s on oxygen fifteen hours a day and I don’t wanna get like that.”

Table 6

Supporting the offer.

Frame of reference (current PR/menu-based approach pathway) and Item type	Participation rate (%)	Category	Sub-category
Current; Hindering	40	Constraints of the healthcare service	Varying healthcare priorities AB05P: “Well my daughter was given lots of papers to talk about COPD. She was given 4 monthly check ups… She was sent to xxx for her breathing exercises…the only thing I had was two steroids and a yearly visit from the nurse.”
Current; Hindering	36	A lack of HCP–patient relationship AB17H: “…if I’m seeing somebody on a ward I don’t know that well but just fits into a particular category… a patient with COPD who’s come in with an infectious exacerbation then you say ‘There’s good evidence for pulmonary rehab so at some point, maybe not now but when you’ve recovered, it would be a good idea for you to do this…’ Whereas, with some of the asthma patients… you know a particular element of their symptoms is due to deconditioning and their breathlessness isn’t responding to things like inhaled steroids then you might spend a bit more time going through it and saying ‘This is why I think you particularly might benefit from this cos it will build your muscle strength and over time I think you’ll see an improvement in that particular symptom.’”
Menu; Hindering	36	The beliefs of HCPs AB13H: “I personally think physically going to a group run by physios with other people there and turning up on the day I would be more likely to maintain the exercise…”
Current; Helping	48	HCP engagement in PR	Facilitating a joined-up service AB12H: “Because of the type of intervention it is they need to be empowered to do it… so sometimes trickling [the idea of PR] in and definitely putting on my plan to revisit and revisit and revisit… a really good example would be that somebody else has gone along, normally a COPD nurse specialist, and they’ve spent loads of time talking about inhaler technique and maybe future care planning but they haven’t spent that much time around pulmonary rehab and I can go along sometimes and because of the slight different perspective, slight different training, can change their view on that and get them in a different way.”
Current; Helping	32	Valued support	Support from HCPs AB07H: “…you’re sort of left on your own [when completing home-based PR] and [patients] could do with a bit of interaction. So it’s just making them aware that as part of that, ‘Oh that’s fine but you can call the rehab office and they’ll help you if you’re not sure about anything or if you’re worried about something.’”
Current; Helping	44	The HCP–patient relationship AB04H: “I think the person who’s actually counselling them to go on pulmonary rehab. What sort of relationship do they have with that particular professional? What’s their consultation skills like? You know, cos consultation skills and being in synch with somebody’s health behaviours and psychology I think is really, really important… So if you’re gonna have somebody completely out of the blue trying to counsel patients to go to pulmonary rehab it won’t work as well as perhaps as having somebody who knows the patient, who has a trust with the patient and they’ve got a rapport built in.”
Current; Wish list	72	Improving access to PR	Improve how PR is offered AB08P: “I’ve learned I can perhaps do something about [my COPD]… I can do that and try and help myself or other people can help me as well… If I’d seen this about 8 years ago [I] might have… I’ve never heard of it.”
Menu; Wish list	56	Developing a PR service for all	Introduce the menu of programmes to all AB15H: “I think it’s nice before they actually come to have some awareness…to say that ‘This is something that’ll be discussed when you go for your assessment, but these are the different options that are available. So have a think about what you think might work for you.’”
Menu; Wish list	48	Guiding patient decisions AB24P: “…it’s okay giving you all these choices but you do need somebody to go through it with you…”