Patient experiences of face-to-face and remote clinics in a cystic fibrosis service – what can we learn?

Introduction

Cystic fibrosis (CF) is a multi-organ disease which requires management by a specialist multi-disciplinary team located in one of 28 adult centres across the United Kingdom (UK). CF Trust guidelines recommend that adults with CF should be seen in a clinic by a CF specialist team consisting of a consultant, physiotherapist, dietitian and nurse at least 4 times per year to ensure that health is monitored and treatment is given appropriately (CF Trust 2011).

The Wessex adult cystic fibrosis service is based at University Hospital Southampton (UHS) with 300 adults with CF attending the service. Many of those attending the service in Southampton live more than 50 miles from the hospital, with some driving up to 3 hours one way to their hospital appointment and others flying in from the Channel Islands. Anecdotal evidence from patients at the Wessex adult cystic fibrosis service suggested that they found the clinic experience frustrating at times and were keen to seek alternatives to their routine three monthly face-to-face clinic appointments.

It was recognised by the Wessex adult cystic fibrosis team that clinic flow was sub-optimal. Analysis of clinic flow in 2018 demonstrated that on average patients spent 36% of their total clinic time waiting to be seen by the next clinician. Consequently the team implemented changes to streamline clinics and minimise wait times, including the introduction of a pre-clinic meeting which encouraged clinicians to prepare for clinic beforehand rather than on the day. Having made changes to the clinic structure it was decided to invite patients to share their views on the face-to-face clinic experience using a questionnaire, to ensure any future changes would be patient-centred and improve the clinic experience for patients as well as clinicians.

The initial questionnaire was completed in 2019 and the team began to discuss changes that could be made to improve clinics. However, in March 2020, the impact of the COVID-19 pandemic necessitated rapid changes to CF outpatient clinics; from a face-to-face to a remote (for example, telephone or video consultation) service with patients continuing to have three monthly clinic appointments. Evidence suggests that remote clinics are liked by people with CF (Wood et al. 2016) and it was hypothesised that remote clinics might address some of the challenges posed by face-to-face clinics, such as the need to travel long distances for an appointment. A 2nd questionnaire was conducted to understand the challenges and advantages of remote clinics from the patient’s perspective. The aim was to use the information gained in both questionnaires to offer an improved clinic service which met patient’s needs once it was possible to return to routine face-to-face clinics.

Method

Participant sampling and eligibility

Participants for both questionnaires were chosen from a convenience sample of adults attending a routine face-to-face clinic appointment at the Wessex adult cystic fibrosis service between 1st September and 1st October 2019 (questionnaire 1) or a remote clinic appointment between 1st–31st July 2020 (questionnaire 2). Participants were eligible if they had a diagnosis of CF confirmed by sweat test and genetics, had attended at least one face-to-face clinic appointment (questionnaire 1) or remote appointment (questionnaire 2) at UHS and had capacity to consent to their participation.

Ethics and approvals

The questionnaires were part of a service evaluation and therefore ethics and approvals were not required. Both questionnaires were registered at UHS as service evaluation (SEV/0288 – questionnaire 1) (SEV/0289 – questionnaire 2).

Procedure

For the 1st questionnaire, eligible participants were invited by clinicians to complete the questionnaire feedback when they attended their routine clinic appointment. Those who consented were contacted within 3 weeks of their appointment by a volunteer at UHS. The volunteer recorded a written summary of the participant’s answers for questions 1 to 3 and documented the participant’s 3 answers for question 4 which were given in order of the participants’ perceived priority. Proformas were stored in a locked, secure area and were anonymised.

For the 2nd questionnaire, eligible participants were also asked if they would like to participate in the questionnaire during their remote clinic appointment which occurred in lieu of a routine 3 monthly face-to-face appointment. Those who consented were contacted by telephone by the patient experience team who routinely undertake patient surveys at UHS. Answers were recorded anonymously on the Gather survey database (https://gthr.co.uk).

Questionnaire design

Both questionnaires were designed by the Wessex adult cystic fibrosis service quality improvement team. Questionnaire 1 aimed to understand the reasons participants attended CF face-to-face clinic appointments and the participants’ perspectives of the challenges and benefits of attending clinic. There were 4 questions in questionnaire 1 which are shown in Figure 1.

Figure 1: Questions asked during the face-to-face questionnaire.

Questionnaire 2 aimed to understand the patients’ perceived benefits and challenges of remote and face-to-face clinics and whether patients would want to continue with remote clinics in the future. The questionnaire comprised 15 questions (Appendix 1).

Data analysis

Written comments from questionnaires 1 and 2 were analysed using thematic analysis (Braun & Clarke 2006) to identify patterns within the data relating to participants’ experiences of face-to-face or remote clinics. Thematic analysis was chosen for its ability to be used with many types of data including summaries (Braun & Clarke 2013). Qualitative data analysis was carried out by KS, LD and ES and any discrepancies in themes and coding were discussed until a consensus was reached.

In questionnaire 1, data from question 4 were numeric and were analysed for frequency of answers reported. Quantitative data from questionnaire 2 were presented descriptively as percentage (categorical data) or mean and range (numerical data).

Results

Questionnaire 1: face-to-face clinics

25 participants (89% of those eligible) agreed to complete questionnaire 1. Each respondent answered all 4 questions. Participant demographics are shown in Table 1.

Table 1: Demographics of participants for questionnaire 1.

Purpose for attending clinic

Responses to question 1 showed that participants saw the main purpose of attending clinic as the opportunity to have their health reviewed by the multi-disciplinary team, particularly their CF-related diabetes and their lung function. It also gave them the chance to discuss their current treatments.

Factors that affected the clinic experience

5 themes were found to influence the clinic experience in a positive or negative way. These were travel, communication, logistics of clinic, support from the CF team and service development. The impact of these themes is shown in Table 2.

Table 2: Key themes affecting the participant’s experience of face-to-face clinics.

Most important aspects of face-to-face clinic appointments

Finally, participants highlighted the top three aspects of clinic they considered most important (Figure 2). Only 5 aspects of clinic were reported by respondents in total, with participants citing an ‘opportunity to complete pulmonary function tests’ (mentioned by 14/25 participants) as the most important reason for attending clinic.

See Figure 2: Frequency of the top three aspects of clinic considered most important by participants.

Questionnaire 2: comparison between face-to-face and remote clinics

A total of 48 participants completed the questionnaire (94% of those eligible). Participant demographics are shown in Table 3. Lung function is not included as this data was not available for most participants at this time as participants were not coming to the hospital for their clinic appointments due to the ongoing COVID-19 pandemic. Some participants did not answer every question. The questionnaire assessed the remote clinic experience in 2 areas: travel and technical. It also asked participants to compare remote and face-to-face clinics and to list the benefits and disadvantages of both types of clinic appointment.

Table 3: Demographics of participants in questionnaire 2.

Travel

Technical

Face-to-face compared to remote clinics

See Figure 3: Responses for better use of time for remote appointments versus face-to-face appointments.

See Figure 4: Participants perceived advantages and disadvantages of remote clinic appointments.

Discussion

Here we present work detailing attitudes of people with CF to different models of delivering outpatient adult CF care. The 2 questionnaires have highlighted the perceived advantages and disadvantages of both face-to-face and remote clinics and have shown that neither option offers an ideal clinic solution. Whilst remote clinic appointments were able to counteract some of the disadvantages of face-to-face appointments such as travel inconvenience, they also brought new disadvantages such as the difficulty of objectively assessing physical health remotely.

Participants viewed remote clinics positively overall with 71% of participants willing to continue with remote clinic appointments in the future with several participants keen to see the opportunity to alternate remote and face-to-face appointments in the future. Just over half of participants (52%) reported that the benefits of remote clinics outweighed the benefits of face-to-face clinics. They were perceived to be less expensive, were time efficient as they negated the need for participants to travel to their appointment saving an average of 2–3 hours travel time per appointment, and were easier to fit in with a person’s lifestyle. There were also unforeseen benefits such as a being able to physically check medication details rather than relying on memory at a hospital clinic appointment. However, they also offered less opportunity for a full physical assessment, particularly of pulmonary function. It is recommended that pulmonary function testing should be performed at each clinic visit (Cystic Fibrosis Trust 2011) and as with other chronic lung diseases it is a key outcome measure for assessing lung health. Subsequent to this work, solutions have been implemented to address this issue and the majority of patients at the Wessex adult cystic fibrosis service now have a home spirometer.

These results are broadly in line with patient experiences of remote clinics at other CF centres. An analysis of 79 video consultations at the Royal Brompton hospital found that patients saved time and money when their appointment was conducted remotely. They also demonstrated that remote spirometry was both feasible and showed a high degree of accuracy (Parrott et al. 2019).

Communication was seen as key to a successful clinic review for both clinic formats. Participants reported that they valued the opportunity to talk to the multi-disciplinary team at face-to-face appointments and to feel they had been listened to. In contrast, some participants found remote clinics made it more difficult to communicate with a clinician and technical issues with phone reception also increased frustrations around communication. However, communication issues did exist in face-to-face clinics and included the need to repeat the same information at each visit, for example, a medication list. Although this may be necessary to ensure that the patient has not stopped or started a medication without the clinician’s knowledge it is clearly a source of frustration for some.

The questionnaires have their limitations. The sample size for both questionnaires was small, although the completion rates were high, with less than 16% of the total adult CF population at the Wessex adult cystic fibrosis service interviewed for either questionnaire. However, similar themes were reported by a majority of participants for both questionnaires suggesting that the main advantages and disadvantages of both types of clinic appointment have been captured.

The two questionnaires have provided the CF multi-disciplinary team with valuable patient-led information to use to plan future services. CF care is rapidly changing. New life-changing medications, known as CFTR modulators, are available for over 90% of adults with CF and have been licensed for use since June 2020. CFTR modulators have been shown to reduce pulmonary exacerbations and increase lung function and may alter the need for regular face-to-face reviews as people with CF live longer, healthier lives (Heijerman et al. 2019). These questionnaires will provide the team with patient insights to allow them to deliver a service that meets their patients’ changing needs.

Conclusion

Clinicians should use the feedback from both questionnaires to improve both face-to-face and remote clinics. For example, explaining to patients why they may be asked about their medications at every appointment may alleviate frustration for some. Future changes should seek to provide a clinic service that offers some flexibility to patients, giving them the opportunity to choose their type of clinic appointment, where clinically appropriate. In addition, further evaluation of the optimal model of virtual clinic appointment is required, for example comparing video and telephone appointments. Any future model of outpatient care delivery is likely to involve a hybrid model of both face-to-face and remote clinic appointments and the use of technologies which enable objective assessments of health status in person and remotely. Finally, clinicians should work with local IT to ensure that the technology used during remote appointments works consistently for both patients and clinicians.

Key points

1. The majority (71%) of people with CF would be willing to include remote clinic appointments in the standard CF care.

2. People with CF perceive advantages and disadvantages to face-to-face and remote clinic appointments with neither type of appointment offering the perfect solution: a flexible approach to clinic appointments, where clinically appropriate, will therefore improve the clinic experience for many.

3. Further evaluation is needed to assess the effectiveness of any hybrid clinic models introduced in the future.

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