Some practical difficulties were encountered during this study. The principal investigator was not part of the breast cancer surgical team. That created recruitment difficulties that were imposed by the Research Ethics Committee (REC).
Following four meetings and presentation of the research protocols to the local REC, it was agreed that the clinical team should approach the patients initially for this study. This
allowed a period of four weeks for every patient to decide whether they wished to participate in one of the four phases of this study. It is difficult to know the precise impact of this decision on this research. It may have affected the participation rate. On the other hand, it may have reduced potential investigator bias by not allowing an initial contact with the principal investigator.
The methods section is an accurate reflection of the initial protocol. An aspect that was different was step 2 of phase 1. This had to be modified because of time constraints in consultant led National Health Service clinics. The impact of this was likely to be minimal, taking into account the interaction with clinicians during the third and fourth phase of this study.
The development of the breast specific PCI was based on information generated by patients following diagnosis and treatment or during their treatment. For the PCI to be used during the pre-treatment phase it will need further development.
Evaluation in the clinical setting will be required for the validation process of the PCI. The longitudinal effect needs to be assessed. It is possible that patients will stop pointing out issues in the PCI if these are consistently ignored or not resolved. This is a classical method of generating a persisting unmet need.
During this work, several points with a direct effect on patient care were recognised. As clinical standards of care increase, expectations on the clinical team also increase. As an inevitable consequence, there is a clear need to develop a new set of skills for the proper provision of modern care. In addition, the National Health Service as an organisation, is currently undergoing significant scrutiny in terms of cost effectiveness, with services in the secondary care sector being rationalised, and where possible being relocated to primary care settings. The breast cancer specific PCI has the potential to provide the multidisciplinary team (MDT) with a tool that could form part of the clinical framework that ensures appropriate, optimal, and accessible care. For example, it may be possible to provide a
146
Pa
ge
146
username and password to all newly diagnosed patients with breast cancer; with minimal guidance these patients could use the PCI in their home environment, thereby ensuring continuous care and a ‘point of contact’ with the clinical team. The results from the PCI could then be directed electronically to a designated member of the extended team with the responsibility to triage and direct the patients to an appropriate member of the clinical team. The PCI may be of benefit if used by the clinician as an aid memoire in a busy outpatient clinic. This would ensure that the clinician includes all relevant or most common patient generated (and therefore of significance to the patient) issues in their consultations.
The use of the PCI in a community setting could divert clinical services away from hospitals for transient and less significant symptoms that do not require specialist intervention. Properly trained in the use of the PCI, specialist primary care services could offer significant cost-savings compared with an approach that is based on the delivery of those same
procedures being carried out in a consultant-led service. This would be of even greater significance in the putative consultant (or specialist based service). In order to ensure optimal clinical care provision, it is essential that consistency should also be assessed for quality assurance, and this may be incorporated into a PCI training programme. Equally, the PCI may be used in the primary care setting where the General Practitioner or community nurse could utilise the tool to identify issues, before communication with the relevant clinical team.
The PCI may be the start of a model of care that has the ‘expert patient’ as the central figure. This would ensure that all key aspects of care are examined, and that those aspects are those that matter most to the individual patient. Only in this situation will any Health Service be able to deliver a truly tailored (patient centric) service that ensures patient satisfaction over their complex and uniquely individual cancer journey. This journey may be completely different to that which textbooks, training, and peer pressure lead clinicians to believe in. A patient centric evidence base may describe multiple diverse journeys, which intersect with the clinician and pathology led journey only at specific “hard” points.
The overriding purpose of modern medical training is to create a competent clinician at specialist level who can provide core medical or surgical treatments, which meet the needs of their patient population. Sometimes there is an over-emphasis on clinical rather than
communication or personal skills. A balance must be found between the anatomical, physiological, and pathological based cognitive and psychomotor skills and those based in the interpersonal and attitudinal domains. The PCI can be used as both a communication- skills tool and a tool that focuses the consultation, thereby bridging this gap.
147
Pa
ge
147
The use of the PCI could aid the clinician in the identification and management of
traditionally difficult issues, such as those related to social or sexual function. Some patients find the clinical setting intimidating and may not feel able to express their concerns to clinical staff regardless of attempts by those staff to appear open to enquiry despite attending regularly as part of their cancer surveillance program. Indeed, it may be because they are appearing in a “cancer clinic” where they are “glad to be alive” that they feel unable to engage. The PCI can help patients in this group to vocalise their concerns in multiple and varied environments with consistency, therefore ensuring that some concerns are not missed completely.
The PCI encourages the interaction and use of the expertise of multiple teams that can collaboratively accommodate and resolve difficult clinical problems. Integrated care pathways describe, for a specific clinical condition, the tasks to be carried out together with the timing and sequence of these tasks and the discipline involved in completing the task (Baker J, 1996). Further research is needed to provide evidence that the incorporation of the breast cancer specific PCI in integrated care pathways can make a real clinical difference. There is a need to assess the presence of a relationship between PCI use, and a variety of measurable outcomes including patient recovery, physical function, and emotional health. Screening interventions are designed to identify disease in a community early, thus enabling earlier intervention. A screening tool for the identification of psycho-oncological treatment need in breast cancer patients has been developed (Meraner et al, 2009). However, this is only applicable to the psycho-oncological treatment need rather than to the range of issues that may be present in breast cancer patients. The breast cancer PCI includes a range of items that are part of validated health-related quality of life tools and has the potential to be used on its own. Further work will be essential in order to verify the ability of the PCI to be used as a screening tool on its own, or together with a health-related quality of life measure. Drawn from the experience of the breast cancer patients participating it appears that there are several issues that breast cancer patients would like to discuss. As clinicians, it seems we have a tendency to discuss the cancer and its treatment but these may not be what our patients want to discuss in an outpatient clinic. During this work, the principal investigator published papers related to the head and neck PCI and the details of these have been given in chapter 11. A direct comparison of the issues that patients would like to discuss in the head and neck and breast cancer clinics has been made (Kanatas et al, 2013). For 447 HNC patients, 8% (37) wanted to discuss ‘mood’, 13% (57) ‘anxiety’, 9% (41) ‘depression’, with one or more of these 20% (91). HNC patients wanted most (39%, 174) to discuss fear of recurrence. For 200 BC patients, 15% (30) wanted to discuss ‘mood’, 21% (41) ‘anxiety’, 17% (33) ‘depression’, with one or more of these 35% (70). Also, 62% (124), wanted to
148
Pa
ge
148
discuss fear of recurrence, 39% (78) fear of cancer spreading and 32% (63) fear about the future, with 72% (143) one or more of these. These are presented in detail, in Figures 13 and 14 below.
Figure 13 A typical PCI profile of issues patients wish to talk about in their consultation with their head and neck cancer consultant / doctor
(N=447 patients) H&N domains-Physical and functional well-being (GOLD), Treatment related (BLUE), Social care and well being (Yellow), Psychological, emotional, spiritual (GREEN), Others (GREY)
149
Pa
ge
149
Figure 14 A typical PCI profile of issues patients wish to talk about in their consultation with their Breast cancer consultant / doctor
(N=200 patients) Breast Cancer domains-General Information (YELLOW), Body image (BLUE), Physical Functioning and health (GOLD), Psychological, emotional (GREEN), Sexual Functioning (GREY), Social functioning /Family related (PURPLE)
150
Pa
ge
150
There is a range of items and there is variation between the two different types of cancers. Considering these variations there is scope for the development of the PCI for other cancer types as well as for chronic diseases such as diabetes and osteoarthritis.
Finally, the PCI allows patients to tell us what they want to discuss, and facilitates
collaborative care. Through the PCI, patients can communicate their concerns and needs as adults in partnership with the clinical team managing their illness, allowing for improved assistance in managing their cancer and its consequences. This is very much in keeping with the move away from paternalism within modern clinical practice and embracing the issues around survivorship in cancer.