Meet the Excellence in Cancer Research 2017 award winner Julie Hoole
When Calderdale and Huddersfield NHS Foundation Trust lead cancer nurse Julie Hoole saw that sexual and intimacy needs in her patients were not being addressed, she helped develop the MHK Tool – a sexual function and intimacy questionnaire – to act as a means for patients and clinicians to be open to discussion
Jim Brook was diagnosed with throat cancer in 2011. His wife Tracey was diagnosed with an identical throat cancer in 2015. ‘The treatment of most head and neck cancers leave the patient with decreased functions in the head and neck especially the mouth.
‘Loss of saliva makes the patient self-conscious as well as impaired when it comes to kissing and probing with tongues. Sometimes, in more severe case where surgery has been essential, the patient can experience physical deformity and this can also be very damaging to self-confidence.
‘These issues were never discussed with either my wife Tracey or me in either of our diagnoses or discussions regarding treatment.’
Tracey adds: ‘If people with head and neck cancers know from the beginning that things may change – but told at the outset not to worry as there is lots of advice and help available for them during and post treatment – it would help.’
The couple provided patient input for a tool to help health professionals advise head and neck cancer patients on how to deal with the changes and alterations in their sexual and physical relationships during and post treatment.
The MHK Tool – a sexual function and intimacy questionnaire – has been developed by Julie Hoole at Calderdale and Huddersfield NHS Foundation Trust lead cancer nurse and two consultant maxillofacial colleagues.
Her ‘excellent work, breaking taboos and making patients’ lives better’ saw her named winner of the Cancer Research UK-sponsored Excellence in Cancer Research category at the prestigious RCNi Nurse Awards.
Julie Hoole, who has been a head and neck cancer nurse specialist for more than 13 years, could see that sexual and intimacy needs in her patients were not being addressed. And it is an increasing need – oral cancer rates increased by 68% in the past 20 years. Oropharyngeal cancer is now being diagnosed in patients aged 20 upwards – in the main due to oncogenic HPV virus.
Julie says: ‘Even if gender-neutral vaccination is introduced now a decade’s cohort has been affected. This means intimacy and sexual problems are more openly expressed in head and neck cancer patients.
‘There may be sexual dysfunction issues before and after treatment as the patient’s body image changes and they lose confidence. There are also pressures on the patient’s relationship which can lead to breakdown, including the change of roles to a carer and the loss of identity in the relationship.’
‘Problems with intimacy and sexual dysfunction in patients with cancer of the head and neck are often not recognised by the clinical team. There are no formal training processes and no existing assessment tools’
There was nowhere to refer her patients so she trained as a psychosexual therapist in her spare time and began delivering psychosexual therapy for her patients.
‘It is not possible for an individual to meet this large need,’ she says. ‘Problems with intimacy and sexual dysfunction in patients with cancer of the head and neck are often not recognised by the clinical team. There are no formal training processes and no existing assessment tools. The gap in care is an “elephant in the room”.
Problems with intimacy
‘The way forward was to create an intimacy tool that could help identify the size of the problem and act as a mechanism for patients and clinicians to be open to discussion.’
Julie decided to research the tool, as chief investigator, with two maxillofacial consultant colleagues. A literature search found papers identifying the problem, but not what to do about it. There were plenty of services for gynaecological, breast or prostate cancer.
‘Problems with intimacy in patients with these cancers are often identified during consultations because of their obvious effects on sexual function, but this is not the case with cancer of the head and neck,’ Julie explains.
‘I and colleagues have argued strongly in favour of recognising the mouth in its widest context as a sexual organ. It is a major part of intimate interaction with our loved ones and it is extraordinary that this has not been recognised in the past.’
Julie held seven focus groups to find out what information on intimacy patients would have wanted and when.
‘They constantly refined a draft questionnaire generated by the researchers combined with input from recognised clinical leaders in the field,’ she says. ‘This resulted in the document used in the study.’
Crucial focus groups
The power of focus groups’ involvement proved crucial when she was securing ethical approval for the study.
Julie explains: ‘The people sitting on the ethics board openly said they were too anxious to take it forward. They were concerned about the language we were using, but I had evidence from the focus groups that that is what they wanted.’
In fact the delicate nature of the subject was a challenge ‘from the outset’ she says. ‘While I was trained in psychosexual therapy my medical colleagues were not.
‘Even in the medical and nursing world and using a strictly established scientific approach there was an ever-present risk of descent into prurience.
‘Again the open and honest involvement of patients was key. It showed that patients are asking for help in this area. This gave the drive for the medical teams, who came from a distinctly “hard” surgical background, the confidence to be on board with supporting the research and open to training sessions.’
‘Sexual function and intimacy is included in the health needs assessment pre-treatment, post-treatment and throughout follow-up with an educational toolkit on where to refer on to or how simple changes can be made’
The study validating the tool involves 200 head and neck cancer patients who are alive and disease free up to five years post diagnosis and treatment. The cross-sectional survey will gain an indication of the impact head and neck cancer has on intimacy and sexual function and compare clinical characteristics with the tool items such as age, stage, treatment, time since treatment, and established head and neck health-related quality of life measure.
The research is on top of her everyday work as her trust’s lead cancer nurse, which has led to recruitment being slower than anticipated. A teaching hospital – Leeds General Infirmary – has joined the study, which should boost numbers. However with colleagues, Julie has published the initial literature review and presented the results from the focus groups and first 50 cross-sectional study patients.
‘The intention is to use the tool in clinical practice where we hope to identify patient intimacy and sexual dysfunction concerns and improve consultations between professionals and patients so their concerns are addressed. But as we are still in the process of validation it is not yet in routine clinical use,’ says Julie.
‘It has, however, already raised awareness of the topic, allowed some patients to have unaddressed needs met and made clinicians finally address the “elephant in the room”.
‘Sexual function and intimacy is included in the health needs assessment pre-treatment, post-treatment and throughout follow-up with an educational tool kit on where to refer on to or how simple changes can be made.
‘Consultants within head and neck are including the discussion about possible sexual impact of the oral cavity during consent.’
Julie has delivered training sessions to consultants, nurses and allied health professionals on sexual function and intimacy, and has more planned.
‘Some of it is just about using simple language that patients can understand. The biggest issue with clinicians is opening the door to the discussion in the first place and I deliver hints and tips training for that.’
Training under way
Training is under way in two other trusts that want to bring it into their health needs assessment procedures. Julie is also looking at the development of an app for the tool and educational package so it can be as far reaching as possible.
‘Ultimately, this tool can be the scaffold to build educational courses for cancer nurse specialists in psychosexual therapy, to support psychosexual therapists specifically working with cancer patients, as well as direct education to anyone treated for cancer who maybe experience intimacy problems,’ she says. ‘It is not simply intended to be a tool to measure suffering.’
Maxillofacial/head and neck consultant David Mitchell says that as a Macmillan-trained cancer nurse specialist, psychosexual therapist, educator and researcher, Julie is uniquely qualified to take this work forward.
‘This award recognises and celebrates individual cancer nurses or teams who are involved in clinical research to discover new ways to prevent, diagnose or treat cancer and improve patient outcomes. Julie has done some fantastic work to address an area of unmet need for her patients’
He adds: ‘Her insightful contribution to the care and support of head and neck cancer patients cannot be overstated. Never before has this opportunity to “open the door” for patients to discuss intimacy and sexuality in relation to living with and beyond their cancer been enabled in such a pragmatic way.’
The Nurse Awards judges were impressed with the way Julie had broken down barriers and shown the importance of using frank language.
Cancer Research UK lead research nurse Anne Croudass says: ‘This award recognises and celebrates individual cancer nurses or teams who are involved in clinical research to discover new ways to prevent, diagnose or treat cancer and improve patient outcomes. Julie has done some fantastic work to address an area of unmet need for her patients.’
Bridging the knowledge gap
For Julie it is about bridging the knowledge gap for her colleagues to benefit patients with cancer. ‘I can see that it is making a difference,’ she says.
Tracey Brook and her husband Jim are grateful for the support and ‘sound practical advice’ Julie has given them.
Jim says: ‘The after-effects of our treatments made a difference to our intimacy and relations. However, Julie helped us accept the “new normal” and find different ways to discover each other again.
‘This has helped us to further strengthen our relationship.
‘She gives patients confidence as well as support and exudes enthusiasm. You can tell it is truly her vocation.’
The Excellence in Cancer Research Award is sponsored by Cancer Research UK