Promoting integrated care in prostate cancer through online prostate cancer-specific holistic needs assessment: a feasibility study in primary care

Prostate cancer is the most common cancer in men living in the UK, with over 47,000 cases diagnosed annually [1]. Ten-year survival rates are high (84%), but cancer survivorship is placing an increasing demand on already stretched specialist services [1]. Consequently, many men living with or beyond prostate cancer report on-going needs, with concerns around urinary, bowel and sexual dysfunction, as well as general information [2]. Patient-perceived unmet needs have been shown to be associated with decreased quality of life in cancer survivors [3]. Changes to the organisation of services are required to ensure needs are more effectively addressed.

Primary care has traditionally had limited involvement in comprehensive cancer care [4]. However, patients who are stable or whose cancer has been successfully treated are increasingly being offered primary care follow-up in line with recommendations from the National Institute of Care Excellence [5]. Guidance on follow-up for these patients, however, has been very limited.

Integrated models of care have been proposed as a way of optimising the treatment of cancer and follow-up care [6]. However, primary and secondary care services are often fragmented; with poor communication, lack of coordination, and role definition indicated as persistent problems [7]. Furthermore, patients living with and beyond cancer often report a desire to be actively involved in their care, but many feel excluded from care planning and shared decision making [8].

Holistic needs assessments (HNA) are recommended in the treatment and follow-up care for cancer and aim to provide a mechanism to help patients more easily identify and disclose their needs to healthcare professionals (HCPs), and aid the development of person-centred care plans. The sharing of care plans has been identified as a facilitator to improve communication and care coordination [8]. However, HNA are not routinely carried out during follow-up for men with prostate cancer.

Digital health technology has the potential to better enable an integrated model of care via improvements in communication and information transfer [9]. When applied to the context of HNA, digital health technology could facilitate the sharing of identified needs and care plans, between services and with the patient.

We developed an online prostate cancer-specific holistic needs assessment (sHNA) [10] with the aim of promoting an integrated approach to care through enhanced communication between the patient and health care providers in specialist and generalist settings. The sHNA includes 11 domains that encompass prostate cancer symptoms and a range of broader issues. The system is adaptive, enabling patients to choose domains for self-assessment that are deemed personally relevant, and it also encompasses external links to curated sources of information in response to specified concerns. In this way, it is intended to support men in identifying and communicating their on-going needs to their HCPs and to facilitate self-management. It also allows the online sharing of care plans between HCPs and the patient, thus promoting an integrated approach to care through enhanced communication.

The aim of the current study was to test the feasibility of undertaking a primary care-based randomized cluster controlled trial in terms of recruitment, retention, engagement, and acceptability of the intervention. This paper addresses implementation (extent to which the intervention was delivered as intended), practicality (extent to which the intervention was carried out with intended participants), and acceptability (extent to which the intervention is deemed attractive to those delivering it or programme recipients) [11].

The primary aim of our feasibility study was to assess the recruitment, retention, acceptability, and engagement of patients and nurses with the sHNA.

Initial patient engagement with the sHNA was high, with all but one patient receiving nurse-led follow-up and an individualised care plan following the completion of the sHNA. The sHNA also proved useful in identifying concerning or ‘red flag’ symptoms for discussion, and helping practice nurses decide when to seek or arrange further medical care for the patients, thus contributing to important components of safety netting within primary care [17]. This coupled with positive feedback indicated by the TAM suggests that online assessments and joint care planning during nurse-led consultations are acceptable to men living with and beyond prostate cancer. However, care plans are often not routinely provided to cancer patients [18]. Furthermore, it is widely reported that older adults are underrepresented in cancer related-trials [19], yet ~ 50% of men recruited to this study were over the age of 76 years. Despite the positives that can be drawn from this, progression criteria in terms of recruitment and engagement were not met. Overall, patient recruitment was low for both the intervention group (22%) and control group (13%) and lower than the 61% recruitment of eligible men reported by a recent pilot study looking at a nurse-led psycho-education intervention for men with prostate cancer [20]. However, the mentioned study recruited only participants who self-reported unmet needs related to urinary, bowel, and sexual or hormone-related functioning/vitality. In contrast, our study included both a digital element and also a broader sample of men (i.e. those who had ever had a prostate cancer diagnosis, regardless of the perceived level of need). Whilst reasons for poor uptake were not recorded, a recent systematic review reported that retention is lower among cancer patients allocated to web-based intervention arms [21], and thus such interventions may also achieve lower recruitment. Difficulties engaging primary care practices to participate in the study and the mandatory Macmillan training for the nurses’ also impacted recruitment. Training dates were limited, and some practice nurses were not able to attend, and as such were not eligible to run an intervention site. Smaller than anticipated practice patient lists also limited the numbers of eligible participants.

Our descriptive analyses showed no difference between older and younger participant groups in terms of retention. However, the majority of men in the older age category received additional support and encouragement from a peer supporter ‘ITmate’ which likely enhanced their retention in the study. As such, the ITmate may represent a promising model for improving recruitment and retention rates among older adults for digital-based clinical trials. Furthermore, we observed that median time since diagnosis was longer among study completers (120 vs 60 months), but given the small number of participants other confounding factors e.g. co-morbidities and disease severity were not controlled for. As such, we make no inferences from this. However, our previously published qualitative study [22], concluded that the sHNA may be most relevant if implemented at an early stage closer to diagnosis. As such, time since diagnosis should be explored in a larger trial, with tailored strategies for retention developed if this factor is shown to be predictive of drop out.

Our findings demonstrate a potential for the sHNA to be implemented as intended, with ~ 70% of intervention participants accessing sHNA 1 and 2. However, sHNA completion rates failed to meet progression criteria, given the low number of participants who completed sHNA 3. This was due to a number of factors including a late starting site and cumulative effects of study withdrawals and death. Most patients opted for a telephone consultation rather than a face-to-face meeting with the nurse, suggesting this as an acceptable and likely time saving way to communicate. The median consultation length was 15 min. Duration included time taken by the nurses to open and log-in to the IT software, speak with the patient, and update their care plan and records. Previous studies evaluating specialist nurse-led telephone follow-up in men with prostate cancer have shown high levels of satisfaction, with patients finding the service both informative and useful [23]. Given the increasing role of primary care in cancer care follow-up, it is encouraging to see that telephone consultation remains a favourable way of contact; as when coupled with novel digital health technology as in our study, this has the potential to improve intervention accessibility and reach [24].

Practice nurses made seven patient referrals to other services. Whilst it is unclear from the findings if these referrals were above and beyond that of routine care, it does indicate a need for this type of follow-up. The vast majority of needs identified by patients through the sHNA were managed by the practice nurse, highlighting the ability of this professional group to deal with the broader concerns of men with prostate cancer and coordinate their care. Interventions using nurse navigators have previously been shown to improve patient experience and reduce problems in care for patients with breast, colorectal, and lung cancer [25]. Using the sHNA outcomes and patient clinical information, nurses were able to determine any problems requiring further management, and refer patients quickly and directly to a specialist nurse. Whilst this achieved coordination of care, integration in terms of a shared approach to patient management did not take place. The major limiting factor to the integration of care was a lack of integration between the IT platform that held the sHNA output and the NHS Trust clinical data management system. This necessitated a manual process for alerting specialist clinicians to study patients with forthcoming clinic appointments and required clinicians to register and login to a website outside of their clinical portal. As a result, and knowing practice nurses would be likely to make contact if required, clinicians failed to access the system.

Emotional concern was the most common domain accessed in the sHNA, suggesting that men seek greater support with emotional concerns. It is well evidenced that depression in men with prostate cancer is a significant and complex issue [26]; however, whilst this study was not powered to detect changes in outcomes, pre-and-post WEMWBS scores did not denote a change of improvement for the intervention. This suggests that sHNA and joint care-planning may not be enough to support the emotional needs of men with prostate cancer, but may help to identify men requiring emotional support.

The sHNA was perceived as useful by patients, with nurses’ indicating a willingness to implement it routinely. However, these findings should be interpreted with caution given the low patient numbers for the adjusted TAM. Acceptability of the study protocol was low when considering the high level of missing data within the PROMs. Reasons for missing data are not known, but may be indicative of the high volume of PROMs and resulting questionnaire fatigue. Further work is required to ensure questionnaires are suitable and acceptable to patients. This could include undertaking cognitive interviews with patients to ensure acceptability of the questionnaires [27], allowing for adaptions to be made where indicated, as well as user testing to ensure acceptability of the digital format they are presented in.

In conclusion, although the findings from this feasibility study failed to meet the progression criteria for undertaking a randomised controlled trial in the current context of primary care, the sHNA was acceptable to patients and showed promise in facilitating focused and timely patient consultations, identifying ‘red flag’ symptoms, and assisting with coordinated referrals to more specialist care. Furthermore, practice nurses were open to implementing the sHNA into their routine practice, but there may be a need for practices to be financially incentivised to take on this activity. The findings of this study underline known challenges to implementing digital technology to facilitate care integration across healthcare services. Whilst our study showed promise for improving care coordination, full integration did not occur as intended, and further work is required to overcome barriers related to IT system integration. However, with growing numbers of survivors, the landscape of cancer is changing [28], and primary care and specialist care communication is essential to ensuring the long-term and optimal management of these patients. With some small refinements to the sHNA together with IT systems in place that can support integration across primary and secondary care, there is clear potential for this system to facilitate holistic integrated care.