P ROGRAMAS DE FORMACIÓN Con el fin de organizar la variedad de titulaciones y planes de estudios y hacer

2.2.1. The concept of patient-centred care

‘Patient-centredness’ in medicine was introduced in the mid 1950s [Balint, 1955]. This concept suggests that patients should be understood as a unique being, and seen in their biopsychosocial entirety [Mead & Bower, 2000]. Central to this approach is where the provider ‘tries to enter the patient’s world to see illness through the patient’s eyes’ [McWhinney, 1989] and the resultant care provided is ‘closely congruent with, and responsive to patients' wants, needs and preferences' [Laine & Davidoff, 1996]. A comprehensive definition for patient-centred care is proposed by the US Institute of Medicine [Committee on Quality of Health Care in America, 2001] as being care

with the following characteristics: (a) responsive to consumer needs, values and preferences; (b) integrated and coordinated; (c) relieves physical discomfort; (d) provides emotional support; (e) allows for the involvement of family and friends; and (f) supports the provision of information, communication and education to enable patients to understand and make informed decisions about their care.

As new directions and models in health care systems evolve, patient-centred care has acquired an increasingly prominent role in achieving quality care for patients and their caregivers [Jayadevappa & Chhatre, 2011]. Fundamental to patient-centred care is enhanced clinician–patient communication with the primary attributes of compassion, empathy, and responsiveness to the needs, values, and expressed preferences of the individual patient [Perrochia et al, 2011; Committee on Quality of Health Care in America, 2001].

Research evidence relating to patient-centred care may be categorised in two ways [Lutz & Bowers, 2000]. The first category considers patient-centred care in re- organisation of services around patients’ needs. This approach considers implementation of patient-centredness in restructuring and integration of services [Wakefield et al, 1996], and provides the benchmark for delivery of quality care, particularly in those with chronic conditions [Harrison et al, 2009]. This approach in cancer is exemplified in the incorporation of patient-centred care as a key strategy in NHS policy for cancer care services [DOH, 2004], the National Cancer Survivorship Initiative [DOH, 2010] and the most recent NHS cancer policy, the Cancer Strategy Implementation Plan [NHS England, 2016].

The second category defines patient-centred care as efforts towards understanding and meeting patient-perceived needs, priorities, and expectations for health care in clinical practice. This approach is influenced by the quality of the interaction between the provider and the patient. According to Street et al [2009], the principle functions of patient-centered communication are the exchange of information, supporting patients' self-management, the management of uncertainty and emotions, decision making and enhancing the physician-patient relationship.

A patient-centred approach is widely acknowledged as a core value in clinician-patient interactions in the management of chronic conditions, in primary care settings [Hudon

et al, 2012], and in cancer care [Zucca et al, 2014].

2.2.2. Patient-centred care in cancer

From a practical standpoint, patient-centred care in cancer is unlikely to occur without a good understanding of patient needs and factors that influence them [Richardson et al, 2007]. Communication during cancer care is particularly challenging due to the involvement of multiple clinicians over an extended period of time, the emotional and psychological impact of the disease, the use of complex multimodality treatments, and the uncertainties associated with disease progression and treatment toxicities [Mazor et al, 2013; Epstein et al, 2007]. Patient-centred cancer care places a premium on patient- centred communication skills that facilitate patient’s needs to be articulated, addressed, supported and incorporated into the delivery of care in each phase of the cancer care

continuum [Committee on Quality of Health Care in America, 2001; Baile & Aaron, 2005].

The cancer care continuum demarcates a patient’s cancer experience into six phases, namely prevention, screening, diagnosis, treatment, (post-treatment) survivorship, and end of life [Epstein et al, 2007]. The patient’s position in the cancer care continuum is one of the most important contextual elements that determines the nature of concerns raised during clinical encounters [Epstein et al, 2007]. The post-treatment survivorship phase is potentially the longest phase in the continuum as it begins immediately after treatment and extends to the end of life phase. Here is where potentially the greatest gap between the biomedical perspective i.e. cure or remission, and the patient’s illness experience can occur [Epstein et al, 2007]. Through the patient-centred approach, meeting patients needs with appropriate supportive care i.e. care that helps patients and their family cope with cancer and its treatment [Gysele et al, 2004], can enable patients to journey the survivorship trajectory better, as many experience high levels of unmet need, particularly unmet psychosocial need [Sanson-Fischer et al, 2000] and experience dissatisfaction with their care [McDowell et al, 2010] during this phase.

2.2.3. The oncology outpatient setting

During treatment and the immediate period after can be extremely challenging times for HNC patients and the need for supportive care is greatest [Chen et al, 2009A; Chen et

al 2009B; Chen et al, 2009C; Oskam et al, 2013]. Post-treatment outpatient clinic

follow-up (FU) appointments are opportunities for patients to gain access to their clinicians/surgeons and other members of the HNC multidisciplinary team in addressing their concerns, distress and needs for supportive care. However, the clinical encounter during these appointments can be demanding for both the patient and clinicians, making the task of identifying and addressing patient concerns difficult.

Ghazali & Rogers [2011] outline the multiple challenges faced by patients and doctors

in undertaking a holistic assessments while attending a busy outpatient oncology clinic, where appointments are time-constrained. Patients who attend these clinics may be unwell. Some patients have had to travel for long distances from where they live to attend centralised cancer clinics. Many experience long waiting times before being seen [Clayton & Dudley, 2009]. As a result, some visits are rushed due to demands on

meeting hospital transport arrangements. Patients commonly experience psychological distress, as many are anxious and fear recurrence, while other experience depression [Rogers et al, 2009; Llewellyn et al, 2008].

Patients’ beliefs and social pressures can contribute to why some patients may be unwilling to disclose their distress or discuss psychological concerns [Epstein et al,

2007]. Some patients believe that they should be ‘glad that treatment was successful’,

and believe that others expect them to feel this way [Epstein et al, 2007]. Some patients do not want to appear weak, and the fear of being stigmatised for seeking psychological help may prevent them from seeking support [Holland & Bultz, 2007]. Many patients fear of being a burden on clinicians who they believe are very busy with more important things to address [Zucca et al, 2014]. Patients are reticent in discussing sensitive and embarrassing issues, like intimacy [Low et al, 2009] and sexual dysfunction [Rogers et

al, 2015A]. Those with lowered self-esteem and who have a lack of knowledge or

information about their condition can find the clinical setting intimidating. In this situation, they are unable to voice their concerns, are reluctant to complain and are conscious of taking up valuable consultant time [Rogers et al, 1999]. Thus, patients may take a stoical view and are unwilling to disclose their concerns, worries or complaints.

Because patients tend not to disclose these concerns spontaneously, clinicians need to enquire about their concerns [Epstein et al, 2007]. However, clinicians are under pressure to perform cancer surveillance tasks, examine prosthesis/wounds, and provide information, advice and reassurances during this small window of opportunity at clinic appointments. When given the opportunity, patients have indicated a wide range of items of concern they wish to discuss and may wish to do so with the multiple healthcare providers they interact with throughout the survivorship phase [Rogers et al,

2009]. Patients want healthcare providers to enquire about their physical and emotional needs [Richardson et al, 2007], and their spiritual wellbeing [Best et al, 2014].

One barrier in assessing patient needs and concerns has been the absence of best practices in identifying needs and concerns by healthcare providers [Wen & Gustafson,

2004]. Assessments can be chaotic and unsystematic, and healthcare providers infrequently capture accurately what patients are trying to tell them [Richardson et al, 2007]. In a survey of HNC clinical nurse specialists (CNS), over three-quarters felt

strongly about their personal role in uncovering unmet needs in patients, and their preference was to rely on counselling and communication methods to identify patients’ concerns rather than structured screening tools [Rogers et al, 2011A]. The extent to which needs and concerns are identified this way is likely to depend on the quality of that ʻone-to-oneʼ contact, which may not be reliable and consistent across the board. Indeed, healthcare providers vary widely in their ability to elicit relevant information, and equally, patients vary in their ability to voice their concerns and anxieties [Richardson et al, 2007].

Patients with inadequately addressed concerns and/or unrecognised issues may fail to get the multidisciplinary supportive care they need. Persistent unmet needs can lead to poorer overall health, inefficient use of healthcare [Barg et al, 2007], dissatisfaction [McDowell et al, 2010] and poorer health status. In these circumstances, there is benefit in introducing a framework-based approach to ensure that the needs and concerns might be identified in a standardised and structured manner [Richardson et al, 2010].