First patient passport for gynaecological oncology patients launched by the Trinity St James’s Cancer Institute

The Trinity St James’s Cancer Institute (TSJCI) has announced the roll-out of ‘My Gynaecology Patient Passport,’ a resource for patients diagnosed with, or undergoing investigation for, gynaecological cancer which will be carried by patients throughout their cancer journey.

The first of its kind for gynaecological cancers in Ireland, the patient passport will be provided to patients being treated for ovarian, uterine, cervical, vaginal and vulval cancers during their first visit with the St James’s Hospital Gynaecology Team. The document, which is filled in collaboratively by patients and their clinicians, will include important information and visual aids related to the patient’s diagnosis and care plan, and will provide helpful resources to support patients both before and after treatment. It has been designed to allow patients to take ownership of their care and improve communication between patients, specialist healthcare teams and primary care physicians.

Prof. Catherine O’Gorman, Consultant Gynaecological Oncologist at the TSJCI, said, “We are really pleased to have developed this simple but effective document that aims to empower patients with a clearer understanding of their diagnosis and care. Importantly, clinicians and patients collaboratively fill in personalised details of diagnosis, treatment and survivorship. Patients diagnosed with gynaecological cancer can understandably be fearful and overwhelmed by the information they receive during their initial appointments. We hope that the patient passport will improve how information is absorbed and shared with family or other healthcare practitioners.”

‘My Gynaecology Patient Passport’ has been developed by the multidisciplinary team providing care to patients with gynaecological cancers at the TSJCI, as well as patients who have been diagnosed with gynaecological cancers. Noting the importance of patient involvement, Ashley Lilly, Gynaecology Oncology Advanced Nurse Practitioner, said: “The reallife experiences of patients have been crucial to the development of the gynaecology patient passport.

Throughout the process, patients have been centrally involved so that their main concerns are addressed in the passport, including those related to exercise, diet and sexual wellness.”

Clinicians at the TSJCI treat approximately 300 gynaecological cancer patients each year and, as treatments for gynaecological cancers improve, focus is turning towards cancer survivorship.

Professor John Kennedy, Clinical Professor of Oncology at Trinity College Dublin and Co-Director of the Trinity St James’s Cancer Institute said: “Given the growing number of cancer survivors in Ireland, survivorship is regarded as a distinct phase in a patient’s cancer journey. The Trinity St James’s Cancer Institute views survivorship as part of the continuum of patient care. Initiatives such as the gynaecology patient passport and our recently opened Gynae Oncology Survivorship Clinic, which caters for the holistic needs of patients, underline how important all elements of cancer care are, not just surgical, radiation or medical oncology treatments.”

The first print of ‘My Gynaecology Patient Passport’ has kindly been funded by the Crosby family in memory of their daughter and sister Niamh, who sadly died from ovarian cancer in 2016 and was cared for by the St James’s Gynaecology Team. Peter Crosby, Niamh’s father, said: “We are extremely grateful for the dedicated care Niamh received from the gynaecology team at St James’s Hospital. Throughout Niamh’s illness, the team were always on hand to answer any questions and ease concerns. We are delighted to support the first print of the patient passport which will hopefully give some comfort and reassurance to patients receiving treatment for gynaecological cancer.”

We spoke to both Prof. O’Gorman and Ashley Lilly to find out more about this important initiative.

What is included in patient passport?

A lot of information is provided at initial visits to cancer care clinics, and it is well known that people will not absorb all of it. Often what we are discussing is very new to the patient, it’s out of their normal conceptual framework and with their associated anxiety it is very understandable that not all is absorbed. The passport contains more information than we can provide in clinic, but the value is more that the patient owns it. They can take it home, go through it in their own time and pace, and can share it with their family, their GP and other healthcare providers.

“It also contains a structured treatment summary part where we can say very precisely and succinctly, what the diagnosis was, and what the treatment was and that’s going to be very useful for sharing with their family or GP or other healthcare practitioners. There is advice or recommendations for GPs, for long-term kind of care and followup as well.”

So how do they envisage this will change, or improve the care for patients? Prof. O’Gorman believes that the function is to empower patients. She adds, “It’s about giving patients all of the information so they can take ownership of their care. They will know what to expect from hospital stays, what they should and shouldn’t do before or after treatment, including for example easy to understand advice on pelvic floor exercises. There is advice on what to look out for and when to seek medical attention.

“We as hospital professionals are always delighted to see a well-informed patient, a patient taking ownership of their health. Many survivorship issues can be appropriately dealt with by patient education and self-management at home, with signposting to relevant resources and services. This passport aims to improve just that, and hopefully will result in better survivorship care for women with gynaecological cancers, and reduce unnecessary clinic attendances at busy cancer care clinics.

“We hope to improve patients’ general health after their cancer because of the recommendations around bone health or other types of screening or a healthy lifestyle after cancer or HRT after cancer.”

Ashley adds that the treatment summary page will be particularly useful. “Within the passport, there is a treatment summary page that the clinician fills out. The idea being that when the patient finishes all their appointments in hospital, they can go to their GP and say, ‘This is my diagnosis, this is what I have done. This is the follow-up that I’m going to have. This is the recommendations for you. I need to make sure that I’ve got a DEXA scan booked, I need to make sure that this is monitored.’

“Our clinicians can write in this and improve the communication between us and their GP through the patient, empowering the patient to advocate for themselves.”

Is there a plan for this initiative to be rolled-out across other hospital groups in Ireland? “We are collaborating with the NCCP to create a national Gynae working group with a view to roll-out our initiative nationally,” says Ashley.

Prof. O’Gorman adds, “We were keen to develop a passport specific in our centre so that we were able to have a little bit more information to it that would be particular to our patients. We will have to make it a little bit more generic when rolling it out nationally, and we’d be developing it with representation from all of the gynae-cancer units in Ireland.

“I think it is absolutely key that we have good engagement with the passport from healthcare providers. I believe patients will value it and engage with it more if they see their healthcare providers engaging with it. To this end we really focused on involving all of our multidisciplinary team in its design, and its evaluation. Their feedback was very valuable. It needs to be user friendly for both patient and healthcare provider if we are to achieve the levels of engagement and value that we are aiming for.”

Will there be any future editions or updates?

Ashley says, “We have tried to leave quite a lot of space for say notes or additions or other options. So if there are new clinical trials – there is space to add additional information. I suppose long-term we would like to go digital. But I think it’s important that we utilise and learn from this before we go down that line.

“A hard copy version is useful given our patient population are not all IT literate, though IT literacy in our older patients is increasing over time. The next phase will be moving into digital and interactive applications or platforms,” adds Prof. O’Gorman.

Ashley continues, “We have a survivorship clinic which has just been set up as well, which goes hand in hand with the passport and is like the other end of the journey, once patients are finished treatment, we will have a consultation with them, around six months post-diagnosis and because that’s when we feel that patients are kind of just getting back on their feet. Their acute appointments and treatment and everything has been completed and that’s when they feel a little bit lost.

“They are wondering who will look after them when their appointments are not as regular. People stop treating them like a patient and they are often expected to go back to their normal lives. But these women have been through such a massive ordeal . We are using a holistic needs assessment as the structure for the clinic. Therefore, it is not only about their clinical symptoms, it includes their sexual health, mental health, day-to-day living, their relationships, and their sleep. It’s a more general holistic approach to make sure support is provided in all aspects of their lives.

“To conclude we would like to note, the print and design of the passport was funded by one of our patient’s families. The patient unfortunately passed away but her parents are still very involved in fundraising for the service and for St James’s Gynaecology Department. They have funded the first print and design. They are an incredible family, the Crosby family, and we are very appreciative of all their efforts.”

Ashley Lilly, ANP, Gynaecology Oncology – alilly@stjames.ie

Catherine O’Gorman, Consultant Gynaecological Oncologist – caogorman@stjames.ie

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