A paper format for the HN-PCI was developed from the TST version [Scott et al,
and logistical constraints in other clinical units. Furthermore, patient confidentiality and data protection issues with electronic data are clinical governance concerns raised by other institutions. These provided the rationale for introducing a paper format. In a prospective study comparing TST and paper HN-PCI versions [Scott et al, 2013], no statistically significant differences were noted between paper and TST in how many HN-PCI concerns were selected by patients or discussed in consultation, nor in length of consultation. FOR, chewing/eating, dental health, swallowing and salivation issues were the 5 most common concerns across both HN-PCI versions. Only a small proportion (< 10%) encountered difficulties when completing either form of HN-PCI. Based on these findings, it was concluded that the paper HN-PCI was an acceptable and fitting alternative to the TST version.
At the time of when the current work was developed and planned i.e. October 2010 to February 2011, there was only a small collection of published HN-PCI-related studies for consideration. These studies were composed of data that were predominately generated from a cohort composed of oral cavity cancer survivors, and were based on the experience gained by a single physician who had originally introduced this PRO. Thereafter, two explorative studies of HN-PCI use by other doctors unfamiliar with the HN-PCI were published [Scott et al, 2012; Ghazali et al, 2013A]. The lack of data demonstrating the feasibility of using the HN-PCI in other HNC subsites remained. While one HN-PCI-related study of various HNC subsites was available, the items of concern identified using the paper HN-PCI in that study were not obtained through the outpatient setting but rather through a postal survey as part of a service audit exercise
[Kanatas et al, 2013]. It can be argued that there was no evidence that the HN-PCI
could be successfully used in a wider clinical setting, testing whether various doctors and patients who had never used the HN-PCI, could utilise this tool effectively. Thus, the next critical step in the development of the HN-PCI at that stage was to demonstrate that HN-PCI could be rolled out effectively in other HNC clinics outside of the circle of familiarity. This sets the stage for this current doctorate study.
While this current doctorate study was being undertaken, other developments relating to the HN-PCI occurred, and these are discussed henceforth. In September 2015, the tenth UK nationwide audit of HNC commissioned by the Healthcare Quality Improvement Partnership, was published [DAHNO, 2015]. For the first time this annual audit exercise evaluated the compliance of HNC units with the Cancer Reform Strategy
[DOH, 2007] recommendation regarding patients receiving holistic assessments during
follow-up visits [NCAT, 2011] over a period from 1 November 2013 to 31 October 2014. In this audit, the HN-PCI was selected as a standard patient-reported HNC- specific measure suitable for national comparison based on the tool possessing the following features: (1) HNC-specific, (2) designed for routine use during follow-up visits, (3) enables patients to raise issues and concerns, (4) signposts access to other members of the MDT, and (5) enhances communication, and (6) provides support for holistic assessments [DAHNO, 2014]. The audit reported that not all HNC MDTs nationwide had used the HN-PCI. It estimated that only 539 patients (11.2%) had filled the HN-PCI within 6 months of their diagnosis compared with 754 patients (15.6%) who had not. The status was not recorded in 2859 patients (59.2%), and 680 (14.1%) patients were classified as being ‘not applicable’.
The underwhelming application of the HN-PCI across-the-board highlighted fundamental issues, which suggested barriers to its comprehensive acceptance. A major issue is the lack of specific evidence documenting the ability of HN-PCI as a holistic assessment tool that could bring about measureable improvement in patient care, and also in service delivery. For this to occur, there has to be a meaningful engagement between the HNC MDT and the supportive services with the holistic assessment process and with the tool selected. In addition, patients’ preferences for participating in holistic assessments need to be determined to ensure that this is useful from their perspectives. Common to other holistic assessment tools, many healthcare professionals were unfamiliar with the process and tools available [NCAT, 2011]. Other barriers to professionals’ acceptance relate to their beliefs regarding their direct role in managing distress and unmet psychosocial needs.
Exploration of patients’ views regarding the HN-PCI denotes a general favourable response [Rogers et al, 2009; Hatta et al, 2014; Rogers & Lowe, 2016; Jungerman
et al, 2017]. Formal workshops and training sessions have been undertaken since
November 2012 to provide healthcare professionals the theoretical and practical basis for using the HN-PCI [Rogers & Lowe, 2014]. However, there is still a lack of definitive guidelines for clinicians in managing concerns identified by the HN-PCI [Rogers et al, 2016]. The availability of a comprehensive ‘rehabilitative/supportive care’ guideline related to the HN-PCI can reassure cancer care professionals when using the tool. Having a template akin to the NCAT Rehabilitative Care Pathways (Head and
Neck) [NCAT, 2010] can help clinicians’ in addressing complex biopsychosocial issues identified by the HN-PCI. However, the guidelines will depend on the services available locally and the critical support of multiprofessionals, who may not be directly related to the HNC MDT.
While the gold standard evidence for establishing the HN-PCI as the standard of care is still work-in-progress, adoption of the HN-PCI is gaining pace in in the UK. Several HNC MDTs are currently involved in a randomised control trial with the HN-PCI intervention [Rogers et al, 2016] and other units whose core members of the HNC MDT have undergone HN-PCI training have adopted this tool in their local practices. Inclusion of the HN-PCI in the 2014 national HNC audit has also resulted in the wider acknowledgement of the tool internationally. This development allowed for exploration of cross-cultural differences in HNC patients’ concerns and needs.
The first non-UK HN-PCI application was reported in 2014, where the original HN-PCI version 1 was modified for use in Malaysia [Hatta et al, 2014]. The modification involved merging of several items into a single (i.e. ‘sexuality’ with ‘intimacy’; and ‘energy levels’ with ‘fatigue’), addition of two new items i.e. ‘health supplements’ and ‘diet restrictions’ and the removal of two items i.e. ‘mood’ and ‘temperament/personality’. Furthermore, an attempt to create domains for the HN-PCI was undertaken producing 7 domains (i.e. physical status, emotional status, personal function, social/family relationships, economic status, diet-related function, and others), although the detailed methodology was not provided. The HN-PCI underwent forward- back translation method to enable cross-cultural adaptation, and was translated into Malay, Tamil and Chinese languages for use in a multiethnic cohort in Malaysia In this cohort, the top five items of concern were predominantly related to physical and functional concerns namely, Chewing/eating (48.6%), Pain in head/neck (43.1%), Salivation (30.6%), Limited mouth opening (30.6%) and Fatigue/Tiredness (20%). The prevalence of selecting FOR was only 6.9% in this cohort, suggesting a possible influence of the East versus Western cultural differences in patients’ responses. This study reported high feasibility of the routine use of modified HN-PCI in the Malaysian setting. Most interviewed patients reported that the HN-PCI reminded them of the problems they needed to discuss, and majority agreed to use the HN-PCI in future visits. The majority of surgeons involved in this study felt that the HN-PCI helped guide them in addressing patients concerns in a more focused way during consultation [Hatta et al,
2014].
The HN-PCI (57-item) was recently translated into Portuguese language in a forward- back translation method, and was successfully adapted and validated in Brazil [Jungerman et al, 2017]. Modifications to the HN-PCI checklist were introduced to enable better understanding of the items and the terminology for professionals to suit the cultural/language and health service setting. The top five most prevalent items of concern were FOR (57%), dry mouth (45%), chewing/eating (44%), speech/voice/being understood (43%) and swallowing (40%). The median (IQR) number of HN-PCI items selected was 8 (5-13), range 0- 42 items, with 89% selecting at least one item of concern. The median and range of items selected by this cohort were generally higher than that originally reported by Rogers et al [2009A], although the top most prevalent concerns selected were similar. The top three specialists selected were speech therapist (26%), dentist (24%) and psychologists (18%). The median (IQR) number of specialists indicated was 1 (0-2), range 0-8 specialists, with 36% selecting at least one specialist. Compared with the findings reported by Rogers et al [2009A], there was a very similar selection profile in regard to professionals/specialists by this cohort, and the only difference being the selection of psychologists in this cohort. The overall patient impression was favourable and authors concluded that there was good user acceptability/ feasibility of the HN-PCI Portuguese version. Finally, the first reported use of the HN-PCI in North America was by Aguilar et al [2017] based in University of Florida, which was discussed in the previous section on using the HN-PCI in screening for oral health and function. The original HN-PCI version 1 was used unmodified in their study. This study did not attempt to address the potential cross-cultural and health care systems differences. This may explain why no mention was made regarding the selection of professionals by patients in their study.