Summary
The hospital’s research found that patients were ill-informed about chemotherapy so a project was initiated to address the educational needs of patients and their carers prior to starting treatment. Demystifying Chemotherapy sessions were designed and tailored by a patient focus group based on its chemotherapy experience to fulfil patient needs. The group continues to support the project. Sessions have now been running for four years and have recently seen delivery support from other professionals in oncology, reinforcing the same messages and the importance of information remaining current.
Challenge
The National Action Cancer Team suggested around 50% of patients experience levels of anxiety and depression at diagnosis which are severe enough to affect their quality of life (QoL) adversely. Macmillan suggests the numbers could be as high as 66%, with only a third seeking intervention. This may affect treatment compliance and in extreme cases, overall prognosis. Distress will affect patient experience and may hinder rehabilitation.
Objectives
Provide timely information across all cancer sites and increase patient self-management skills. To address psychological needs and reduce anxiety, encouraging peer support. To reduce admissions that could be avoided with appropriate self-management and early interventions. To introduce patients to chemotherapy day unit then supply a resource pack with general information reflecting the session content and providing contact numbers.
Solution
‘Demystifying Chemotherapy’ sessions emerged from a focus group of patients who have had chemotherapy. The sessions address the physical effects with an emphasis on recognition, prevention and interventions of emotional distress. Our resources did not stretch to seeing all patients individually for chemotherapy education and we wanted to address both physical and emotional aspects of diagnosis and treatment in a more holistic approach. A 12-week pilot commenced in May 2011, with weekly sessions led by two band seven nurses lasting 3 hours: 131 attended over this period, 64 patients and 57 supporters.
We introduced relaxation techniques and educated the audience to recognise early signs of anxiety and depression. Four years on, a rota of senior nurses deliver the sessions. The Macmillan Information centre co-ordinates the bookings: using this department encourages patients to enter an area offering a wealth of support. Volunteers help with administration and ’meeting-and-greeting’. Intravenous chemotherapy patients are invited to attend the demystifying session, a one-to-one with a senior chemotherapy nurse practitioner, or both. The Lymphoma CNS leads this weekly patient and carer intravenous chemotherapy education session for all cancer sites prior to commencing treatment.
Results
In the pilot, 131 attended over 12 weeks: 64 patients and 57 supporters. 85% of patients stated the session gave them more confidence to have chemotherapy and 100% of supporters had a greater understanding of their relatives’ need for support to maintain a sense of control. 81% of patients and 74% of supporters thought their overall anxiety levels had reduced as a result of the session. 95% of the supporters found suggested changes to cope with disruptions while their partner/family member was receiving chemotherapy, helpful. In the 2014/2015 session evaluations (663 attendees): 96% found session extremely useful, 94% stated questions had been answered fully and they now had the "tools" to search out their queries, 100% of attendees would recommend the session to others. For staff, 100% reported an increase in confidence and knowledge for those having attended a session. Each week approximately 22 patients and carers attend. To date, 2,924 have attended. The number of anxious phone calls going through our Acute Oncology Service and the number of inappropriate A & E admissions has reduced.
Learnings
Oncologists report a noticeable difference with patients who have attended an education session. Patients are more confident and have greater awareness of effects of treatment, enabling their consultations to remain focused and concise, resulting in increased understanding and compliance. As more patients survive cancer, we have increased numbers going into second- and third-line treatments. If we can develop self-management skills with patients at an early point in pathway, their experience should be improved.Evaluation
Evaluations of every session are collected and further audits and surveys are completed annually. All demonstrate a group session encourages self-management skills, instils confidence and reduces some anxiety. It demonstrates this is an ideal platform to maintain knowledge. Evaluations from 25 patients and 17 carers 8 weeks into treatment revealed:
100% of patients and supporters found the sessions useful, while friendly and relaxed.
95% of supporters found suggested changes to cope with disruptions while their supporter was receiving chemotherapy, helpful. Many thought that meeting others starting treatment (92%) and visiting the chemotherapy day unit (85%) helped reduce anxiety. Another significant factor was meeting a service user who having completed chemotherapy was available to answer questions around coping with effects management. We have identified several patients with pre-existing depression that required interventions prior to commencing treatment. We presented this evidence to a local CCG who commended our achievement and requested notification of their patients’ attendance. We have since devised a letter which is sent to GPs following the session. Audit of Acute Oncology Service (50 patients) demonstrated only 0.08% of those phoning for advice had attended demystifying chemotherapy and these were appropriate requests.
