Annie Young

The prostate cancer survivorship program: A new concept for holistic long-term support and follow-up.

72 Background: Previously cancer follow-up was based in secondary care. Survivors were seen in overburdened clinics, receiving brief clinic appointments and limited holistic care. We have piloted a new community based model in prostate cancer survivors in order to reduce service load. Patients are discharged from clinic, and entered into a specially developed web based database. This reviews PSA results, triggers alerts, resulting in specialist nurses (CNS) bringing patients back to clinic. This is supplemented by an annual survivorship conference, where patients have access to heathcare professionals. Patients also have access to community based services including a newly built community centre for patients where they have access to a range of healthcare professionals, ranging from dieticians to psychologists. We present our results, and evaluate this model independently with Pickering Institute patient questionnaires distributed one month pre and post conference and focus groups to develop further recommendations for the programme.nnnMETHODSnWe have developed a team composed of a consultant urological lead, commissioners, a GP, a specialist nurse, patient representatives and an IT specialist. Patients were entered into this programme over the past 1 year (323 so far). Inclusion criteria specify patients must be: 2 years post radical prostatectomy (unrecordable PSA), 3 years post radical radiotherapy with/ without hormones or 3 years post brachytherapy (both with stable PSA) according to the Phoenix criteria.nnnRESULTSnPatients completed an outcome questionnaire before the conference and one month afterwards (55 in total). Perceived control pre-conference was 7.19, post conference 7.38. Concern pre-conference was 3.56, 3.46 post conference. Understanding pre-conference was 7.49, 7.85 post-conference. Focus Group Results: The advantages of community based follow up were having an approachable primary contact, speedy referral, saving time, money and stress over prolonged waits and brief hospital appointments.nnnCONCLUSIONSnWe discuss how the programme can be developed, including: PSA feedback, a buddying system, and how this can be put into use across other tumour sites and other specialities.

The Worcestershire Prostate Cancer Survivorship Programme.

Two million people in the UK have had a cancer diagnosis and, due to improvements in diagnosis and treatment, the numbers of survivors are increasing. According to the National Cancer Institute, cancer survivorship encompasses the ‘physical, psychosocial, and economic issues of cancer from diagnosis until the end of life.’1 Hospital clinics are often overbooked with follow-up of survivorship patients, with little time available for each patient. Involvement of community-based care in survivorship has been shown to be beneficial. Follow-up for prostate cancer survivors through the UK varies, with some being discharged back to their GP and others remaining under secondary care. Cancer survivors may present to their GP after surgery and hospital discharge with a range of problems.

Prostate cancer survivorship and psychosexual care

There have been a number of papers recently that raise significant issues in the treatment of erectile dysfunction in the survivorship population. Cancer survivorship is an increasing issue. Currently, within the UK, 250 000 patients have prostate cancer. According to the National Cancer Institute in the USA, cancer survivorship encompasses the ‘physical, psychosocial, and economic issues of cancer from diagnosis until the end of life’ (Geiger et al. 2008). These unmet needs and large numbers of patients are a significant burden on the healthcare system (Richards et al. 2011). To identify and address this, the National Cancer Survivorship Initiative was created (Maher 2013). As part of their work, ‘key’ shifts in attitude towards care were noted. The focus of this work conducted by the National Cancer Survivorship Initiative was to help patients to get back to a normal life once cured. Normal life – this can be extended to include normal sexual function. There are three points that need to be addressed here. First, while we are monitoring the patient for recurrence, are we addressing their co-morbidities? Beehler et al. (2009) demonstrated survivors had many primary care visits, but no contact with ‘holistic’ care support, for example dieticians, nutritionists, exercise rehabilitation. Presence of serious co-morbidity has also been closely linked to health-related quality of life. Khan et al. (2010) demonstrated a robust follow-up system of primary care is required as part of this. Furthermore, erectile dysfunction was studied by Neese et al. (2003). Educational materials were used as part of the study, to determine the impact. Despite this, 43% of men found their partners did not encourage them to find other sources of support. This work was also covered by Schover et al. (2012), who conducted a survey style intervention and discovered sexual counselling is very often the key. Further contributing to this ‘unspoken’ epidemic, Baker et al. (2005) demonstrated 68.1% of patients involved were concerned that their disease had recurred, with psychological problems focusing on fear. This indicates a valid role for healthcare professionals in prevention of depression and anxiety within this cohort. Despite this, not many have psychosexual counsellors available to address this need as part of a structured survivorship programme. Only 43% of men said their partners had encouraged them to find help with sexual impairment (Neese et al. 2003). This can be an area, which patients, are not comfortable discussing themselves. This could be addressed by adequate Survivorship care and guidelines, which are lacking. Great steps forward have been taken by addition of a section to the European Association of Urology congress on Prostate Cancer Survivorship and Supportive Care, but this can be further developed and supported, with the development of guidance for this cohort.

The Prostate Cancer Survivorship Care Assessment Tool: development of a new way to assess survivorship care quality

Over 2 million people in England have a diagnosis of cancer (Maher 2013). Of this figure, over 250 000 have been diagnosed with prostate cancer (Maddams et al. 2009) and around 130 000 people per year die from the disease (Demark-Wahnefried et al. 2005). To this day, no guidance has been addressed for this cohort. We present development of a new tool for assessment of Prostate Cancer Survivorship care (we have previously published our findings on community-based care in this cohort) Current systematic reviews on prostate cancer survivorship cover a range of topics. These include symptoms include physical limitations, cognitive limitations, depression/anxiety, sleep problems, fatigue, pain, and sexual dysfunction (Harrington 2011). A systematic review was previously conducted (S.S. Goonewardene et al. unpublished manuscript). Based on these search results, a number of unmet patient needs were highlighted (Fig. 1). Every study to date has made the same mistake of examining only one aspect of survivorship. Survivorship is not just one aspect or another, it is examining the patient as a whole. In order to review current programmes, we have developed a Prostate Cancer Survivorship Care Assessment tool, based on themes identified in this systematic review (Fig. 2). The Prostate Cancer Survivorship Assessment Tool looks at assessment of factors applicable to follow up care in the community, but also holistic care. Factors assessed are:

Prostate Cancer Survivorship Experience:Patient Reported Outcome Measures andFocus Group Results

Introduction: There are an ever increasing number of prostate cancer survivors. These patients are currently followed up in secondary care. Focus of care is on recurrence and acute management, not holistic care. nMethod: Over a 3 year period, patients attending follow-up appointments having completed treatment for organ confined prostate cancer and satisfying entry criteria were offered to join the programme. This comprises a database for PSA tracking and holistic assessment of patient needs run by a specialist nurse. The programme is supplemented by a Survivorship conference once a year, where patients have access to healthcare professionals discussing a range of topics related to prostate cancer. We assess patient satisfaction with questionnaires both pre and post conference and with a focus group in order to develop recommendations for the programme. nResults: We currently have 178 on the database 55 patients and friends visited the conference, with the majority specifying they would re-attend. The majority also ranked the conference as worthwhile re-attending. After the conference, we demonstrate patient concern decreases, with disease control and understanding increasing. We also show patients prefer the community based follow-up scheme, as opposed to a hospital based follow up. nConclusion: Survivorship care has yet to be developed fully in clinical practice; this paper demonstrates how we can do this as part of a co-led approach with patients.

Prostate cancer survivorship: a new path for uro‑oncology

Over 2 million people in England have a diagnosis of cancer [1]. Of this figure, over 250,000 have been diagnosed with prostate cancer [2]. However, during the next decade, a rapid increase in the number of new cancer diagnoses as well as a growing number of cancer survivors is predicted [3]. This increase in cancer prevalence results from improved earlier detection and improved treatment an attendant decrease in cancer-related mortality. Yet few studies or guidelines address the broader, multifaceted aspects of cancer survivorship including self-responsibility and patient empowerment, where appropriate.

Prostate cancer survivorship and psychosexual care: PROSTATE DISEASE

With increasing numbers of prostate cancer survivors, it is vital that follow‐up care meets their needs. The authors propose that psychosexual education and rehabilitation should become a standard element of survivorship care.With increasing numbers of prostate cancer survivors, it is vital that follow-up care meets their needs. The authors propose that psychosexual education and rehabilitation should become a standard element of survivorship care.

Prostate Cancer Survivorship: A Systematic Review

Background: Due to advances in cancer diagnosis and treatment, the number of prostate cancer survivors are increasing. Yet, with this expanding cohort of patients, very little has been done to develop services. Objective: A systematic review was conducted to explore prostate cancer survivorship issues. This analysis will inform development of interventions. Design/setting: A systematic review was conducted using the following databases from 2000 to Decembers 2013: CINAHL and MEDLINE (NHS Evidence), Cochrane, AMed, BNI, EMBASE, Health Business Elite, HMIC, PschINFO. The papers were retrieved and a quality assessment was conducted using a new tool for survivorship care standards. Participants/Interventions/ Outcome measurements/ results: 76 papers met the criteria for inclusion. These specified papers must be on primary research, related to prostate cancer AND Survivorship OR any one of the categories of nutrition, exercise therapy, psychology, treatment outcomes. Discussion: The literature is reviewed and the way forward for survivorship discussed. We also identify possible themes for research. Patient summary: Based on these results, we develop a prostate cancer survivorship care assessment tool and identify areas of practice that can be targeting for further research.

Prostate cancer survivorship

The authors present pilot study results from a new scheme for prostate cancer survivors developed at Worcestershire Acute Hospitals. Copyright

Re: Anna Bill-Axelson, Hans Garmo, Lars Holmberg, et al. Long-term Distress After Radical Prostatectomy Versus Watchful Waiting in Prostate Cancer: A Longitudinal Study from the Scandinavian Prostate Cancer Group-4 Randomized Clinical Trial. Eur Urol 2013;64:920–8.

We were glad to see the article on long-term distress after nradical prostatectomy versus watchful waiting in prostate ncancer [1]. This paper highlights a number of problems nexperienced worldwide with follow-up of this cohort and nthe lack of available holistic care facilities. nProstate cancer is one of the most frequently diagnosed ncancers in men [2]. Due to improvements in diagnosis and ntreatment, the number of survivors is increasing[3]. This often nresults in overbooked clinics, with patients only receiving ntreatment of acute medical conditions with no support for naccompanying physical and psychological conditions [4]. nTaking this into account, we developed a new model. nOnce patients with prostate cancer have entered the socalled nsurvivorship phase, they are offered the option of nentering the prostate cancer survivorship programme. nPatients are not followed up in clinic, but their prostatespecific nantigen (PSA) numbers are entered into a central ndatabase. Patients are also allocated a specialist nurse as a nkey worker should their clinical situation change or as a way nof informing patients to attend the clinic regarding PSA nchanges triggered from the database.