Wide-Angle Panoret Camera for LOOC Patients

Thanks to our benefactors, LOOC now has a wide-angle camera for imaging tumours at the back of the eye. This camera greatly enhances patient care by enabling us to perform more detailed ocular examination.

Unlike conventional cameras, this equipment provides panoramic images, which capture the entire margins of large tumours, including areas beyond the reach of standard devices. For example, the photograph shown here is of choroidal melanoma of the left eye, which was successfully treated with a ruthenium radioactive plaque. One can see the white radiational changes completely surrounding the regressed melanoma. The optic nerve and fovea are healthy so that the patient continues to enjoy good vision. The panoramic photograph makes it easier for us to recognize any tumour re-growth, preventing treatment delay.

The Panoret camera is highly advanced technologically and has only recently been developed. The system at LOOC is the first to be installed in the UK and one of the first ten in use worldwide.

Our Panoret camera, which cost us over £45,000, was funded entirely with donations from grateful patients, relatives and other benefactors, to whom we are very grateful. The use of our Eye Tumour Research Fund for this purpose was authorised by the Charitable Funds Committee of the Royal Liverpool University Hospital.

The Panoret camera greatly increases our ability to plan eye-preserving treatment and to ensure that there is satisfactory tumour shrinkage afterwards. The panoramic images provided by our new camera also enhance our lectures and scientific publications, so that we can share our experience with others, thereby improving patient care in other parts of the world.

Peter Forrester. Employee of the Month, December 2006

Many patients will know Pete as the cheerful receptionist, who welcomes them on their arrival at our clinic and who seems to have an incredible memory for names and faces.

Behind the scenes, Pete also prepares all the casenotes and photographs before each clinic and ensures that everything is safely stored away afterwards. He is also very helpful when we need any records or images for our research and is always prepared to go out of his way to ensure that everything is ready as soon as possible.

We are all delighted that Pete’s dedication has been recognized by the Royal Liverpool University Hospital and we are very grateful to him for his contribution to patient care at the Oncology Service.

Published chapter on 15-gauge biopsy of uveal tumours

Bertil Damato and Carl Groenewald have just published a chapter in a textbook on vitreo-retinal surgery, in which they describe their techniques for sampling intraocular tumours, such as melanoma. These methods use a 25-gauge vitreous cutter ('mini-vacuum cleaner'), which enables a relatively large tumour sample to be obtained quickly and safely, under local anaesthesia.

This biopsy technique has greatly enhanced our ability to distinguish melanomas originating in the eye from metastases spreading to the eye from distant parts of the body.

Larger samples of intraocular melanoma also allow us to perform cytogenetic studies to determine whether or not the tumour is life-threatening. This information is very reassuring to patients with a 'good melanoma' and therefore with a normal life-expectancy. Furthermore, patients with a 'bad melanoma' can be offered more intensive care, optimising any chances of prolonging life.

We are currently undertaking quality-of-life studies to check whether the psychological benefits justify any risks to the eye. Our initial impressions suggest that we may soon be offering biopsy of intraocular melanoma to all patients, including those treated by radiotherapy.

(Vitreo-retinal surgery. Eds Kirchhof B and Wong D. Essentials in Ophthalmology. GK Krieglstein and Weinreb RN. Springer. Berlin. 2007).

Treating thick uveal melanoma saving vision - a collaborative study

It is difficult to save the eye and useful vision when an intraocular melanoma is very thick. We tend to remove such tumours surgically, through a trapdoor in the wall of the eye. At Helsinki University Central Hospital, Finland, these tumours are treated with radiotherapy, using an iodine-125 plaque.

Ilkka Puusaari, Tero Kivelä and Bertil Damato therefore merged their results to compare the two treatments. Local resection was more likely to conserve vision, but at a greater risk of local tumour recurrence.

Since patients in this study were treated, local resection techniques have developed so that local recurrence is much rarer than before. This improvement has been achieved by giving a small dose of radiotherapy after the local resection, using a ruthenium-106 plaque.

Another approach is to give proton beam radiotherapy and then to remove the tumour surgically before it causes toxic damage to the eye. Recently, thanks to this combined approach, the captain of a passenger jet was able to keep his pilot’s licence and to continue to fly jumbos internationally. (Puusari I, Kivelä T and Damato B. Transscleral local resection versus iodine brachytherapy for uveal melanomas that are large because of tumour height. Graefes Arch Clin Exp Ophthalmol. 2006 Nov 18; [Epub ahead of print]).

Bertil Damato awarded Bjerrum medal by Danish Ophthalmological Society

On the 25th November 2006, Professor Damato delivered the 2006 Bjerrum Lecture in Copenhagen. He was also awarded the Bjerrum medal by Professor Jan Ulrik Prause, President of the Danish Ophthalmological Society. The lecture and medal are named after the famous Danish Ophthalmologist, Jannik Bjerrum, who in the late nineteenth century, greatly advanced visual field examination and our understanding of glaucoma.

The lecture was entitled 'Can visual field screening improve the survival of patients with choroidal melanoma? In his presentation, Professor Damato described a variety of visual field tests, which he has developed with the aim of making visual field examination more widely available in situations where conventional methods are impractical. These include a disposable paper chart for examining central vision and a portable test for use in the community. A computerised test has also been developed, together with Carl Groenewald, and this is freely available on the internet (www.testvision.org). Some results obtained with these tests can be seen at flickr.com.

Professor Damato also gave an overview of intraocular melanomas and their treatment, summarizing the research performed at LOOC and reporting exciting new developments, which promise to improve treatment of patients with these tumours.

Another grant for ocular melanoma research

Dr Sarah Coupland and Professor Bertil Damato have been granted £3000 from University Research Development Funds and £1500 by the Department of Pathology for research into genetic mutations in ocular melanoma.

In the 1990's, it was discovered that ocular melanomas develop mutations that correlate strongly with survival probability. These mutations are not present in the rest of the body and are not inherited or passed on to the next generation.

Since 1999, the Liverpool Ocular Oncology Centre has routinely offered patients genetic analysis of their melanoma if they had tumour removed as part of their treatment. Investigation of chromosome 3, chromosome 8, and chromosome 6 enables us to determine whether or not the melanoma is life-threatening. However, the technique we are currently using, known as FISH, is expensive, time-consuming and only about 90% accurate at detecting 'good' melanomas.

A new laboratory test has recently been developed, which is known as MLPA (multiplex ligation-dependent probe amplification). This is more reliable than FISH, because it provides information on about 100 mutations on a large number of chromosomes. It is also less expensive. Another advantage is that it works not only with fresh tumour tissue but also with old, archival tissue.

In this research project, we will be comparing MLPA with FISH, to validate the technique. We will also investigate whether MLPA identifies any mutations in the small number of patients who have died despite a false-normal FISH result.

Another important aim is to determine whether a small sample obtained from a large melanoma is representative of the entire tumour. If so, then this will make it easier for us to biopsy all melanomas, even those treated with radiotherapy instead of resection. Such analysis will extend the benefits of precise prognostication to all patients. Those with a good prognosis will no doubt feel greatly relieved whereas those with a poor prognosis can be referred to an oncologist for further investigation and treatment.

Ocular lymphoma research sponsored by LOOC patients

Dr Sarah Coupland, Senior Lecturer in Pathology, Royal Liverpool University Hospital, has just been granted £18,000 for research into ocular lymphoma. This money was provided by the Eye Tumour Research Fund of LOOC, which consists entirely of donations from grateful patients attending our ocular oncology service. The research grant was independently reviewed and authorized by the Charitable Funds Committee of the hospital. Dr Coupland has an international reputation for her previous research into lymphoma and this study therefore has an excellent chance of success.

Lymphomas are cancers arising from lymphocytes, which are white blood cells providing immunity against infection. They can arise within and around the eye, causing local discomfort and visual loss. A minority of these ocular lymphomas also cause generalized disease and can be fatal (Coupland SE and Damato B. Lymphomas involving the eye and ocular adnexa. Curr Clin Ophthalmol, 2006, 17: 523-531).



It has recently been discovered that a gene known as FOXP1 predicts survival prognosis in patients with stomach lymphoma. Thanks to this breakthrough treatment is ‘personalized’ according to the degree of malignancy of the gastric lymphoma. More aggressive treatment can now be given selectively to patients with more dangerous lymphoma, improving their survival prospects, while sparing patients from unnecessary treatment if they have the indolent form of the disease.

Our aim is to find out whether lessons learnt from gastic lymphomas can be applied to ocular forms of the disease. We will examine FOXP1 gene expression in ocular lymphomas, determine its frequency, and assess its prognostic implications. We are confident that this project will greatly improve the treatment of patients with ocular lymphoma of the ‘MALT’ type, enhancing survival and quality of life.

Prize for Jon Durnian, Specialist Registar

Jon Durnian, Specialist Registrar in Ophthalmology, recently presented a case report at a national competition and won a free trip to the Annual Conference of the American Academy of Ophthalmology 2006, which is being held in Las Vegas.

Mr Durnian reported the case of a patient with an intraocular melanoma, who developed retinal detachment and severe glaucoma after proton beam radiotherapy.

Conventionally, this painful complication is treated by removal of the eye. This patient, however, did very well after successful local resection of the 'toxic tumour' by Professor Damato. The retinal detachment resolved completely within a day of the operation and the intraocular pressure eventually returned to normal, so that it was possible to discontinue all drops and tablets.

This case report is important because it demonstrates that many of the problems arising after radiotherapy of intraocular melanoma are caused by leakage of fluid and various noxious substances from the dying tumour. This discovery creates many new opportunities for conserving a comfortable, seeing eye after radiotherapy.

Local resection is not the only method of treating 'toxic tumour' after radiotherapy. We have also had success with transpupillary thermotherapy (TTT), which consists of infra-red laser treatment. Intraocular steroid injections have helped some patients. Very recently, we have started treating patients with intraocular injections of Avastin, which stops fluid leakage from abnormal blood vessels. These treatments are still being evaluated but our initial findings are encouraging and indicate that they all have a valuable role in reducing the side-effects of radiotherapy.

We hope that Jon Durnian learns a great deal at the conference and that he enjoys any spare time without being robbed by one-armed bandits.

Glowing peer review report for Liverpool Ocular Oncology Service

The Liverpool Ocular Oncology Service was visited by a team of external assessors, who included workers from other ocular oncology centres in the UK and observers from the National Specialist Commissioning Advisory Group (NSCAG).

NSCAG is an NHS organization that commissions national NHS services providing treatments for rare conditions. It is therefore involved in planning, funding and monitoring such services. Ocular oncology service for adults is one of the areas it supports.

To merit sponsorship from NSCAG ocular oncology services such as ours are required to comply with National Ocular Oncology Standards. The purpose of the peer review visit was to ensure that we are meeting the national standards.

The full text of the peer review report is appended below.

In summary, we received a very favourable assessment. The visiting team were impressed that we offered such prompt treatment but wondered whether patients needed more time at home to reflect on their diagnosis and treatment options before starting treatment. Until now, we have always let patients decide whether to have their treatment immediately or after a delay. In any case, we are planning to conduct a survey, with the involvement of our health psychologist and medical ethicist.

The visiting team also queried whether treatment decisions should be taken by a multidisciplinary team (i.e. including nurses, psychologist, oncologist, pathologist, radiotherapist, etc - in the patient's absence) as happens in other specialties. Our policy is first to select treatment together with the patient and any relatives, and then confirm this decision at a multidisciplinary meeting involving nurses, a pathologist, a vitreoretinal surgeon, and junior members of the ocular oncology team. Other specialists are consulted only if the need arises. We will be holding discussions with all members of the multidisciplinary team on these matters and we will report back to NSCAG in due course.

___________________________________________________________________

REPORT OF THE PEER REVIEW VISIT TO THE OCULAR ONCOLOGY SERVICE AT THE ROYAL LIVERPOOL UNIVERSITY HOSPITAL,

27TH JUNE 2006

VISITING TEAM

Ewan Kemp: Consultant Ophthalmologist, Glasgow
Susie Masser: Service User, Sheffield
Rhona Jacques: Clinical Nurse Specialist, MacMillan Nurse, Sheffield

Observers:
Adam Bryson: Medical Director, National Services Division, NHS Scotland
Bill Gutteridge: Medical Adviser, National Specialist Commissioning Group (NSCAG)
Sarah Watson: Commissioning Manager, NSCAG

LIVERPOOL OCULAR ONCOLOGY TEAM

Bertil Damato Consultant Ocular Oncologist, Service Lead
Sarah Coupland Consultant Pathologist
Marie Dewhurst Matron, Ophthalmology
Jane Humphreys Ocular Oncology Nurse Specialist
Jean Hannah Ophthalmology Sister
Esther Kirby Lead Macmillan Cancer Nurse
Sarah Quinn Macmillan Cancer Nurse
Claire Jacobson Finance Manager
Eileen Nasserabadi Directorate Manager
Harry Stockdale Medical Physics
Julie Sudlow Secretary to Service Lead
Lisa Dixon Photographer
Amber Tierney Compliance Officer

BACKGROUND

In February 2005, the National Ocular Oncology Group was convened with the following terms of reference:

· to be a source of national clinical advice on ocular oncology to NSCAG;
· the development of national standards and guidance;
· the development of a programme of self-assessment and peer review related to the national standards;
· to be a forum for strategic development of the national ocular oncology service.

The Group developed National Ocular Oncology Service Standards using the standards for commoner cancers contained in the Manual for Cancer Services (2004) as a model. The standards are designed for self-assessment by each ocular oncology centre to be followed by a peer review visit as occurs with services for commoner cancers in England.

OBJECTIVE OF THE VISIT

The objective was an independent assessment to follow-up and validate the centre’s self-assessment against the national standards. A subsidiary objective was to test the appropriateness of the standards, which may later be revised in the light of experience gained in the course of the visits to the four UK centres.


OVERVIEW OF THE SERVICE

Bertil Damato gave a presentation on the service covering the following: the history of the service; composition of the ocular oncology MDT; the range of conditions treated; operational policies for dealing with referrals, initial assessment, treatment and follow-up activity; treatments provided; accommodation and information for patients and relatives; procedures and outcomes; audit; research.

COMPLIANCE WITH THE NATIONAL OCULAR ONCOLOGY STANDARDS

The presentation also provided information relevant to compliance with the standards and the centre’s self-assessment against the standards. In addition, the NSCAG team (BG and SW) verified compliance with all the standards by viewing the documents provided by the service. All the documents cited in the standards document for demonstration of compliance were provided. These included the following: an operational policy covering the MDT, MDT meetings, cover, information to patients and notice of cancer diagnosis to GPs by the end of the next working day; job descriptions of lead clinicians and the ocular oncology nurse specialist; waiting time audit; patient satisfaction survey; minimum data set (procedures, enucleations, recurrence, eyes preserved); nurse training and professional development certificates.

Discussions of specific issues are summarised below.

MDT Structure and meetings
There was a clear statement of the core and extended membership of the MDT. There is one consultant ocular oncologist supported by a fellow, two specialist ophthalmic pathologists and a photographer. Discussions are taking place between the service, the Trust and NSCAG on appointing a second consultant. The service has an ocular oncology nurse specialist, who has undergone and is continuing to undergo appropriate continuing professional development. She is supported by a ward ophthalmic nurse. The extended team includes personnel not seen at other centres, such as a medical ethicist and statistician.

Treatment plans are determined at the patient’s first assessment and the patient is given an audiocassette of the consultation. There is an MDT meeting (attended by the consultant, specialist nurses, outpatient nurse, fellow, SpR, data manager and vitreoretinal surgeon) at the end of the clinic. This was been introduced following the development of the national standards and is viewed as helpful in confirming decisions and occasionally resulting in modification of decisions; and the availability of digital photographs had proved very useful, especially for teaching purposes. Treatment usually takes place the next day (70%) or later in the same week as the assessment. Wider MDT discussion occurs monthly with the histopathologists, radiotherapists and medical oncologist. The visiting team raised the question of whether there should be wider MDT discussion before the treatment decision is made. There is further discussion of these issues below in the section on patient-centred care.

There are good facilities for MDT meetings. Histopathology and photographs can be considered together and integrated in a permanent record for each patient.

Operational policies
Decisions on management are made weekly and recorded in the patient notes.
The service assigns a named key worker for each individual patient and this is recorded in the patient’s notes. There is a clear policy on contact for patients both during the working day and out-of-hours. All patients are given contact details. A discharge letter (detailing the diagnosis and treatment plan)for each patient is dictated by the consultant immediately after the patient is seen in clinic and is faxed to the referring ophthalmologist and GP by the end of the next working day. A follow up letter is sent if anything changes thereafter.

The service has a clear follow-up policy. The extent to which patients receive follow-up by the service itself or through shared-care in collaboration with the local ophthalmologist, and the decision on when they are discharged, depend on their diagnosis, treatment, prognosis and their own preference. There is a guide for practitioners giving advice on follow-up. The consultant ocular oncologist sees all follow-up patients when they attend the centre. After discharge, the patients can keep contact with the service through annual quality of life questionnaires, the website and telephone helpline; a newsletter is also planned. Patients with complications following treatment can gain access either to the service itself or local ophthalmologists depending on their wishes and the nature of the problem.

National audit
The service had participated in the national audit with an excellent result of 95% of patients starting treatment within 60 days of the receipt of the referral. One patient was delayed longer owing to a mislaid referral, which has led to a change in the protocol for dealing with referrals. Ninety per cent of patients are seen within 14 days of referral. Procedures and outcomes were reported and included choroidal haemangioma. The National Ocular Oncology Group needs to define more precisely what procedure and outcome data (standard 42) should be reported. In addition, the visiting team learnt of audits within the Liverpool service of local tumour control in choroidal melanoma, with proton beam therapy and conservational treatment generally.

Patient-centred care
All patients are contacted before the first appointment is arranged and are sent a 70-page guidebook. The service also offers a full range of information leaflets relevant to the patient’s condition and the treatments available. An innovatory initiative is the information “kiosk” in outpatients. There are plans to have a kiosk on the ward as well. The service runs a continuous satisfaction survey, which reports a high level of satisfaction.

There was considerable discussion of the timing of treatment (i.e. most patients starting treatment on the next day after their assessment) and whether patients might benefit by having more time to consider their diagnosis and treatment options and discuss these with their families. While some patients – particularly if they already know that they have cancer – may appreciate the speed with which they receive treatment, the visiting team made two points. Firstly, immediate treatment is not necessary clinically. Secondly, some patients may not be aware of the nature and implications of their condition and treatments, when they first attend, and may benefit from more time for reflection. It was noted that the health psychologist assessed patients on the ward after treatment and before discharge, and the visiting team raised the possibility of whether the health psychologist might be involved before treatment is given. The service responded to these comments by saying that they ensured a family member accompanied the patient at their assessment, that most patients knew they had a tumour, and both the consultant and the specialist nurse spoke with the patients. In addition, the service had received no negative feedback from patients on this issue. However, the satisfaction survey does not specifically address this question.

The visiting team also asked about the emotional support available to patients discharged after enucleation. They can contact the ocular oncology nurse specialist and the health psychologist. There is also an audit on the type of prosthesis taking place and the service is undertaking a quality of life survey on the anniversary of their treatment, which will inform future advice to patients on what they may feel following treatment and help develop a quality of life questionnaire specific to ocular oncology.

Participation in approved clinical trials
The service has nine publications listed in PubMed for 2005 and 10 for 2006. The National Ocular Oncology Group will in the future need to re-visit standard 41 and consider what is feasible with a view to joint research by the four UK centres. Because of the relatively small number of patients compared with commoner cancers, it is difficult to secure funding for large-scale trials. The GEOCONDA database has potential to carry out audit and research with higher numbers of patients by collaboration with other centres at home and abroad.

ADDITIONAL FEATURES OF THE SERVICE

The Liverpool ocular oncology service is unique in the UK in carrying out cytogenetic studies, which used together with the clinical and pathological features of tumours can indicate the risk of metastatic disease. Patients at low risk can benefit greatly from this knowledge. Patients at high risk are referred to a medical oncologist with an interest in melanoma for surveillance. The importance of patients fully understanding the implications of cytogenetic testing before being tested and the ethical implications are recognised.

The service has increasingly been using proton beam treatment as complications are amenable to new vitreoretinal techniques.

Bertil Damato has written and disseminated well-received optometrist referral guidelines including a CD.

FACILITIES

The visiting team visited the in-patient and out-patient facilities. The ward environment was good. The out-patients accommodated consulting rooms, a private counselling room, ultrasound scanning, photography suite and prosthetics.

CONCLUSIONS

The Liverpool ocular oncology service is compliant with all the national standards and has many examples of excellent practice and innovation. Outcomes have been extensively audited, and the service is grounded on clear clinical leadership and a committed team. It is well supported by other services including the nationally designated ophthalmic pathology service.

The only issues the visiting team wished to raise were (a) the speed with which patients progress from assessment to treatment and whether a clear choice between such prompt treatment and allowing time for reflection on the diagnosis and treatment options should be emphasised, and (b) whether treatment decisions should be definitively taken in an MDT setting.

RECOMMENDATIONS

The visiting team recommended that consideration should be given to the following:
the balance of benefit between immediate treatment and allowing patients and their families more time for reflection; making a choice between these two approaches clearly available to patients; ascertaining what patients know about their condition when they first attend;including a question in the patient satisfaction survey on the time between assessment and starting treatment (i.e. Was the time about right, too long or too short?); whether the treatment decision should definitively be taken in the context of the MDT.

The National Ocular Oncology Group should:
define more precisely the outcome data to be reported (standard 42); re-visit standard 41 on national trials in ocular oncology and consider what is feasible with a view to joint research by the four centres.

June 2006