What is patient-triggered follow-up? Currently there are two main methods of follow-up; planned appointments, scheduled at specific times apart or an open access approach. With the second approach, people contact us if they have any concerns. We then arrange to see them, usually very quickly.

We are calling it patient-triggered follow-up but are there other terms people might hear? Hospitals will tend to use their own terminology, so there may be many different names, but patient-triggered follow-up, patient-led follow-up, supported self-management or remote monitoring are commonly used.

How does this differ from appointments people are used to having? In the past, once treatment had finished, or for people on active monitoring, we would give people routine clinic appointments.

We started to realise that it was very unusual for someone to wake up on the morning of their follow-up appointment with symptoms that were causing concern. Instead, people would either turn up without any problems, or would be telephoning us between appointments because they had concerns. So much of our management depends on symptoms and so that is when we need to see people. Patient-triggered follow-up means that appointments are only made when there are concerns to discuss.

Who is likely to be offered patient-triggered follow-up? We tend to use this more often for people with low-grade lymphoma, who previously would have been seen once or twice a year.

We know many won’t need treatment unless they have symptoms, so we make sure they have our contact details and give them the flexibility to contact us with any concerns.

For people with high-grade non-Hodgkin lymphoma, the follow-up period is usually much shorter. Some hospitals discharge people at one year, because it is in the first year there is the highest risk of relapse. Other hospitals might follow-up for two years and discharge at two years, often using telephone follow-up appointments during that time.

Although in Newcastle we have been using this more for people with low-grade non-Hodgkin, there is starting to be a move towards patient-triggered follow-up for people with high-grade non-Hodgkin lymphoma and Hodgkin lymphoma.

Can you be on patient-triggered follow-up if you are on maintenance therapy? People on maintenance therapy with obinutuzumab or rituximab are coming into clinic every two months for their infusion and are usually seen by chemotherapy trained nurses. People are told to get in contact if they have any concerns or problems and so generally, unless there is a new clinical problem, they don’t need additional clinic visits.

When would blood tests and imaging be carried out? The majority of people with lymphoma don’t need routine blood tests or scans. For most lymphoma types, there is good evidence that blood tests are not a good way of picking up any problems and that for most people it is all about symptoms.

For people with Hodgkin lymphoma, high-grade non-Hodgkin lymphoma and follicular lymphoma, so long as they haven’t had any bone marrow involvement, then blood tests and imaging aren’t part of routine follow-up. However people should contact us if they have new clinical symptoms, such as significant weight loss or drenching sweats.

There are a few people where blood tests are used, for example people with Waldenström’s macroglobulinaemia, where we are looking for abnormal proteins in the blood. For these people blood tests are carried out once or twice a year in clinic.

For those on patient-triggered follow-up, how will they know that something has changed, and what should be the trigger for them to get back in touch?

There are key symptoms that I explain to people:

• Significant weight loss. It is not changing a few pounds here or there, and I don’t ask people to weigh themselves. But if someone notices that their clothes are a lot looser, then I would want them to get in contact.
• Drenching sweats. These are usually at night and are so significant that bed sheets may need to be changed. People tell me it feels like someone has thrown a bucket of water over them. If these happen for a week or so, I would want to see the person in clinic.
• Abnormal swelling. If someone notices a lump or a change in the lymph glands. For people with low- grade non-Hodgkin lymphoma, if the swelling is not bothering them, and they don’t have any other symptoms, we are likely to keep them on active surveillance. We know lymph node swellings can fluctuate and treatment is only beneficial if they have associated symptoms. However they should get in contact if the swelling is significant or causing problems.
• Feeling generally unwell. If someone is feeling different, perhaps more tired, this could be related to lymphoma, and this should be a trigger to contact your medical team.

People are given direct access to a clinical nurse specialist (CNS) or another member of the medical team. It is better to pick up the phone and discuss concerns rather than spend time worrying. The concern may be completely unrelated, and the person can be reassured, or an appointment can be made at the clinic. If there is an emergency, people should have a 24-hour contact number.

How are late effects monitored if a person is on patient-triggered follow-up? Late effects we are concerned about depend on the treatment the person has received. For example, if someone has had radiotherapy that involved breast tissue, they would automatically be put onto a screening path within the NHS. If they have had radiotherapy affecting their thyroid gland, then thyroid function would be checked once a year, usually through their GP.

We consider late effects when new symptoms appear. For example, if someone becomes breathless, we may consider heart function when we see them in clinic.

What about questions around living with lymphoma? At follow-up appointments, people often ask questions, like ‘How do I get a letter for health insurance?’, ‘Are massages safe?’, ‘How can I access psychological support?’ or ‘Is it safe for me to travel to the USA?’

People regularly contact their CNS with questions like these and nine times out of ten they can answer these on the phone or signpost them to areas of support such as Lymphoma Action or Maggie’s Centres.

If a doctor needs to answer the question, someone will phone back or a clinic appointment will be arranged.

If someone is on patient-triggered follow-up for several years and has had no reason to get in touch, are they considered out of the system?

The longer the period of time after treatment with no problems, the less likely there is to be one. For people with high-grade non-Hodgkin lymphoma or Hodgkin lymphoma we tend to discharge them after two years. After one year we tend to move them more to patient led follow-up for the final year where they can ring us if there is a problem. We may add in one phone follow-up appointment.

For people with low-grade non-Hodgkin lymphoma, it depends on how much treatment they have had. With follicular lymphoma, 20% of people will never need treatment, and as years go on many people feel confident that they are in that group.

At the moment, most people with low-grade non-Hodgkin lymphoma will remain in the system. A few people ask to be formally discharged, which is fine, although we emphasise that they should contact their GP if they have any concerns. Their GP will contact us if anything changes and they will be back in the system.

What do you feel are the real benefits of this approach?

Some people get anxious just before and after follow-up appointments, so this approach avoids the anxiety this can create. However, they have the reassurance of knowing they have someone they can contact if they need to.

I am also conscious that our clinics are busier. We have many more lines of therapy which is fantastic, and our time is focussed on people who need treatment or whose lymphoma may have relapsed for example. Because of that, the clinic appointments are getting shorter and sometimes I fear that well patients who don’t need any input as they are clinically well, may feel rushed. As long as people know they can contact us at any point, it seems to work well for the majority of people. There are always exceptions, and these are discussed in the team.

“The main benefit is that people can get on with their lives.

They’re not fitting their life around six-monthly appointments, where it is extremely unlikely that a change would be picked up. The problems are likely to happen outside clinic and will be investigated at the most appropriate time.