The shocking findings from a recent Cystic Fibrosis Trust survey - that 1 in 3 people with CF in the UK have missed critical hospital appointments because of how much it costs - illustrates just one of the many difficulties people with chronic respiratory conditions face in attending out-patient check-ups. Here we talk about the issues patients experience in attending clinics, the impact on patient outcomes, healthcare services and the environment, and why clinicians now have realistic alternatives to saying “We’ll see you again in another three months”.
Why do we need alternatives to clinic visits for chronic respiratory conditions?
Barrier to Care Access and Patient Outcomes
Physical hospital attendance can be a significant barrier to care access for people with chronic respiratory conditions, with geographical distance from a specialist respiratory centre being associated with adverse impacts on patient outcomes. A multi-centre analysis of patient access to ILD centres in Canada found that whilst patients with fibrotic ILD who had a longer travel distance to their ILD clinic had better prognostic indices at baseline they had significantly worse outcomes, with a higher risk of death or lung transplant. In the US analysis from 2838 patients showed geographical distance from the transplant centre was associated with greater risk of death for adult CF lung transplant recipients. Prior to introduction of a shared care protocol clinicians at Manchester University NHS Trust ILD centre reported patient journeys of around 200 miles to attend their centre, and that several patients eligible for disease modifying therapy declined referral for treatment due to the travel distance and monitoring scheduled this involved.
Impact on Service Providers
Missed appointments - often called the “did not attend” or “DNA” rate - have a significant impact on service delivery and efficiency. A review of NHS respiratory out-patient services in England found a median DNA rate of 12%, noted to be a significant waste of time, resources and workforce labour with impacts on referral to treatment time. If all NHS trusts reduced their DNA rate to 9% it was estimated that 79,000 respiratory outpatient appointments would be saved across England per year, resulting in annual savings of £13.4 million. Physical attendance also impacts clinical capacity, particularly in the COVID-19 era where infection control measures limit patient throughput.
Impact on the Environment
Physical attendance means travel-related carbon emissions. 10% of all carbon emissions related to the NHS in the UK are due to staff, patient and visitor travel, with an outpatient appointment estimated to have a carbon footprint of 76kg of CO2.
Patient Experience
Travelling to hospital appointments can be really difficult for people with severe chronic respiratory conditions. These are some of the key challenges patients face:
1. Distance to respiratory specialist centres - Whilst the average distance travelled to attend general hospital services is relatively small (e.g. median of around 10 miles/16 km for emergency departments in the UK) specialist lung centres are more geographically dispersed, requiring longer distance travel. For example, there’s just six lung transplant centres covering the UK, with no service located in either Northern Ireland, Scotland or Wales.
2. Frequency of out-patient visits - Patients with progressive interstitial lung disease (ILD), cystic fibrosis (CF) or those post lung transplantation may need to attend hospital every three months for check-ups. Add to this appointments for comorbidities and interventions such as pulmonary rehabilitation, and it becomes clear that hospital attendance is a frequent occurrence for patients with chronic respiratory conditions.
3. Financial Cost - Travel to hospital appointments places a significant financial burden on patients and their families - and rising fuel prices are only one part of the cost. Parking fees, tolls, congestion charges all add up, and those travelling longer distances may even need to pay for hotels and meals.
4. Time - Attending hospital means time away from patients’ normal routines and responsibilities, and with improvements in treatments for conditions such as CF it can mean missed time from work or education.
5. Public transport not an option - Even when available, there are multiple considerations which means public transport is often not a realistic option for those with a chronic respiratory condition; oxygen requirements, the need to travel with back-up cylinders, the risk of exposure to infection, plus the additional physical exertion required.
6. Reliance on family members or friends - The need to rely on others to drive and support them to attend a hospital appointment can have multiple impacts for both patients (e.g. feelings of independence and well-being, relationship strain) and carers (e.g. missed time from work or other duties).
7. Physical ability - For those with more severe disease the physical exertion required to attend clinic can cause considerable symptoms and impacts such as breathlessness, fatigue and emotional distress.
Virtual Care as a Realistic Alternative to Hospital Attendance
There is increasing evidence that digital transformation of care - with virtual appointments supported by remote monitoring to replace in-clinic assessments - increases access to care for patients with chronic respiratory conditions. This model of care is also being recommended as a way of increasing care delivery efficiency, with the NHS England “Get It Right First Time Programme” National Specialty Report for Respiratory recommending that respiratory outpatient services should be optimised by reducing DNAs with increased use of virtual consultations and moving care closer to home. Furthermore, a systematic review found that papers unanimously report that telemedicine reduces the carbon footprint of healthcare, primarily by reduction in transport-associated emissions.
Audits from programmes which have used patientMpower remote monitoring technology for data-enabled virtual consultations have shown very impressive results in terms of care access and patient outcomes. Twelve month data from the virtual care programme for adult CF at Galway University Hospital found that care transformation resulted in 29 hours per patient per year saved in travel time, €898 per patient per year saved in fuel and car-parking charges and 34 days saved in missed attendance from work or education for patients and carers. There was a zero DNA rate and an 11 fold increase in the number of physiotherapy appointments delivered. In terms of environmental impact, there was an estimated 284 kg reduction in CO2 emissions resulting from travel avoidance. In terms of clinical outcomes, there was a 28% increase in patient reported quality of life (as assessed by CFQ-UK), 39% improvement in patient reported symptom score (as assessed by CFRSD) and 65% reduction in length of hospital stay (7.75 days to 4.25 days).
Some clinicians have concerns about patient acceptance of the virtual care approach. In our experience this is not supported in actual clinical practice. For example 100% of patients in the National Lung Transplant remote monitoring programme in Ireland wanted the project to continue. It should also be noted that virtual care is not an all or nothing approach, it is most often used in hybrid virtual and face-to-face care pathways, is complementary to shared care protocols and facilitates rapid triage for in-clinic assessment for those with signs of deterioration.
So at your next clinic consider asking your patients about their experiences of making it to hospital to see you that day. Or why they missed their last appointment.
Get in touch with us to find out about alternative, more patient-centric models of care.