Developing a prostate cancer survivorship programme

The number of new patients attending the rapid access clinics is increasing year on year and this is expected to continue to rise by 3.5% annually.^1,2

Fortunately, with early detection of prostate cancer and the success of its treatments, the population of prostate cancer survivors is also increasing. Currently, prostate cancer survival rates are extremely favourable with a 10-year survival rate of 89%.³ Considering the volume of newly diagnosed prostate cancer patients and the favourable survival rates, it is extremely important to consider the management of potential physical and emotional complications following treatment for prostate cancer. 

Specialist services and medical staff are required to address the specific needs of cancer survivors.⁴ These specific needs are highlighted by the NCCN,⁵ and are identified in Table 1.

The CASE (Care, Advice, Support and Education) nurse project is an initiative developed by the Irish Cancer Society and the Movember Foundation, following a survey completed by prostate cancer survivors in 2011. This survey identified that men did not feel prepared for and had difficulty coping with prostate cancer treatment-related physical and emotional side-effects.⁶ Taking this into consideration, and indeed the prostate cancer statistics highlighted above, a CASE clinical nurse specialist in prostate cancer survivorship was appointed and a survivorship programme for prostate cancer patients was developed.

Setting and patient population

The Urology Unit in Galway University Hospital is one of eight centres of excellence in Ireland. Over 3,000 patients attended the rapid access prostate service in 2016, of which approximately 312 were newly diagnosed prostate cancers. A total of 167 prostate cancer surgeries were performed that year; this included robotic and open prostatectomy surgeries.⁷ The prostate team consists of eight surgeons, a CNS, a CNM, two staff nurses and three clerical staff. We also work closely with other members of the urology team including an advanced nurse practitioner (ANP) in urology (benign LUTs) and a candidate ANP (bladder), physiotherapist (special interest pelvic floor rehabilitation), an ANP radiotherapy (special interest sexual dysfunction) and a GP with specialist training in sexual medicine. 

Planning the survivorship service

Planning the new survivorship service began after the clinical nurse specialist was appointed. The priorities of the CNS in the first instance was to meet with the present uro-oncology team and to identify current services in place, to work with the team to further develop current services, and introduce new services for prostate cancer patients. In order to create awareness of the new service, the CNS held meetings with the urology, medical oncology and radiation oncology teams. The CNS also linked in with survivorship services in the US and the UK as well as meeting cancer support groups and staff at daffodil centres across the west of Ireland. The new initiative was presented on media interviews across local newspapers and radio stations and an article was submitted and printed by a nursing and GP journal.

Referral pathway 

All newly diagnosed prostate cancer patients from the rapid access prostate clinics and the general urology clinics were referred to the clinical nurse specialist in prostate cancer survivorship care and automatically entered into the survivorship pathway. Radiation patients and medical oncology patients are primarily cared for by the ANP in radiation oncology and the CNS in oncology. Referrals back to any of the survivorship programs from these parties are encouraged.

Survivorship projects

Figure 1 provides an overview of the survivorship projects that were developed and the objective of each project.

Survivorship programme discussion 

Prostate cancer diagnosis and treatment planning 

The prostate cancer survivorship programme was developed to equip our patients with as much knowledge and support throughout their cancer journey. This process begins by providing patients and their families with support at diagnosis. Following consultation with their urologist, the patient meets with the clinical nurse specialist and/or the CNM 2 of the urology unit. At this time we provide patients with the contact details for the unit and literature from the Irish Cancer Society on prostate cancer diagnosis and treatment options. Our dedicated prostate cancer nurse line endeavours to ensure that no patient’s questions go unanswered. 

Following staging imaging and further consultation with the consultant urologist and the radiation oncologist, patients are faced with the often difficult task of choosing a treatment option. We offer our patients an individualised decision support telephone consultation with the CNS. During this call we discuss the patient’s perceived pros and cons of each treatment type and how he feels his life would be impacted by each possible treatment implication. We utilise the decision support tool available within the early prostate cancer booklet from the Irish Cancer Society to guide our discussion (see Figure 2).

Patient education is one of our utmost priorities. The CNS developed a pre-operative education seminar at which patients are provided with a further detailed information package on what happens during their surgery, the immediate post-operative recovery process and post-operative recovery following discharge home, and treatment-related side-effects. 

Post prostatectomy rehabilitation

Following surgery all patients are automatically entered into the survivorship and rehabilitation phase of their journey. Patients attend a nurse-led clinic post-op for removal of their urinary catheter, wound review and general assessment post-op. At this visit an individualised survivorship and post-op recovery pack is given to each patient. This pack provides patients with information on incontinence, incontinence products, pelvic floor exercises, sexual dysfunction, penile rehabilitation, diet and exercise, and PSA testing following their operation. 

Eight weeks after surgery, post-op patients are scheduled to attend the nurse and physiotherapy rehabilitation and survivorship clinic. Patient assessment is performed using a holistic needs assessment (HNA), incontinence, sexual function and psychological symptom assessment tools. In future, patient progress and recovery can be monitored based on the outcome of these assessment tools at later visits. A physiotherapist meets with patients at this visit and provides men with further instruction and assessment on pelvic floor exercises and rehabilitation. A treatment summary and survivorship care plan is given to each patient with a copy sent to their GP and a copy filed in their medical records.

Post-op patient follow-up

One year following their prostatectomy, patients enter into nurse-led PSA follow-up. At this clinic we assess patients for cancer reoccurrence, monitor patients for treatment-related side-effects and refer patients to the relevant specialities to support and treat their symptoms. We follow patients’ recovery using a holistic needs analysis and record symptom assessment scores. 

The first visit is completed in the outpatients’ unit and, following assessment for suitability, all subsequent reviews are completed over the phone. At any stage should a patient require a physical assessment and review by a urologist they are immediately scheduled to return to the urology clinic. Having a virtual clinic such as this available reduces clinic wait times, increases clinic availability for complex cases and reduces the financial burden of travelling to hospital for our patients.

Psychological care

Considering prostate cancer survival rates and the potential implications of surgery, a prostate cancer group support and information series was developed. This initiative aims to provide men with information and support relating to the possible side-effects of prostate cancer treatments. The group meets four times a year and each session is facilitated by a prostate cancer nurse specialist and a psychologist. 

Meetings focus on a particular topic relating to prostate cancer recovery and survival with specialist speakers in attendance for each session. The feedback from our support evenings has been very positive. Men appreciate the informative nature of the meetings and also state that a feeling of comfort is felt knowing there are others ‘in the same boat’ as themselves.

Conclusion

The survivorship programme in Galway University Hospital was implemented to provide a streamlined survivorship service for men with prostate cancer. Over 900 patients have been referred to the survivorship programme over the past three years.

We have set up a pathway, which provides men with information and support to guide them on their prostate cancer journey. The survivorship pathway promotes early recognition of treatment-related side-effects and streamlines referral services to specialist healthcare professionals. Our nurse-led clinics are promoting patient-supported self-management by removing the need to physically attend the clinical setting. Over 100 patients have entered into nurse-led PSA follow-up. 

This clinic’s virtual monitoring is not only checking for physical and emotional side-effects but also alleviating the financial burden associated with work leave and travel expenses to and from hospital. Early intervention and a structured support system is key. The feedback we receive from our patients is largely positive. Evaluations from nurse-led clinic services and our support groups confirm this. 

Acknowledgements

A special thank you to all of the staff within the urology unit in Galway University Hospital for their support and guidance, particularly Muriel Moloney, CNM2 urology and Jean Boyle, urology unit co-ordinator who have contributed greatly to this programme and its development.

References

1. NCRI. Prostate cancer factsheet. Cork, 2017. Available at https://www.ncri.ie/sites/ncri/files/factsheets/prostate.pdf
2. National Comprehensive Cancer Network (NCCN). National Cancer Control Programme: Rapid Access Clinics Review. 2017
3. Department of Health. National Cancer Strategy 2017- 2026. Dublin, 2017
4. Chin CK, Rabinouich BH. Cancer survivorship in primary care: Barriers and recommendations for improving care and outcomes. Journal of Oncology Navigation and Survivorship 2017; 8(2): 70-77
5. National Comprehensive Cancer Network (NCCN). Clinical practice guidelines in oncology. 2016. Available at: http://docplayer.net/54607721-Survivorship-nccn-clinical-practice-guidelines-in-oncology-nccn-guidelines-version-nccn-org-continue.html.
6. Irish Cancer Society. Survey among men who had prostate cancer. Milward Browne Lansdowne, 2011
7. Saolta University Healthcare Group. Cancer Centre Annual Report, 2017; urological Cancer: 14-17
8. Irish Cancer Society. Understanding early prostate cancer. Caring for people with cancer. Decision aid tool. 2016; page 23