The Patients Concerns Inventory in head and neck cancer: Comparison between self-completed paper and touch screen versions in the clinic setting

Abstract

Background

The Patients Concerns Inventory (PCI) is a practical tool for patients to highlight their concerns and needs for discussion in consultations.

Objective

To use paper and touch-screen technology (TST) versions of the PCI, to see if there were differences in issues raised by patients before consultation and in issues discussed during consultation.

Methods

Two consultants participated. Also 105 of their post-operative head and neck cancer patients in 122 consultations completed paper or TST versions of the PCI before consultation, April 2010 to April 2012.

Results

There were no statistically significant differences between paper and TST in how many PCI concerns were selected by patients or discussed in consultation, nor in length of consultation. Fear of recurrence, chewing/eating, dental health, swallowing, salivation, head & neck pain, speech and sleeping issues were common concerns across both paper and TST. Fewer than 10% of patients encountered any problems when completing either form of PCI. Interestingly, the two consultants used the PCI differently, reflected in different levels of agreement between items highlighted on the PCI and items subsequently discussed – κappa-coefficients of agreement were 0.68 for the paper and 0.66 for the TST version of the PCI (consultant A) and 0.55 for the paper and 0.32 for the TST version of the PCI (consultant B).

Conclusions

This study found that the paper version of the PCI was an acceptable alternative to the TST version.

Introduction

The Patients Concerns Inventory (PCI) provides a simple, practical tool for patients to highlight their concerns and needs for discussion in their consultations (Rogers et al., 2009). At Aintree University Hospitals NHS Foundation Trust, the PCI has been used alongside the University of Washington Quality of Life version 4 (UW-QOLv4) (Rogers et al., 2002) to enable patients to influence the content of their imminent discussion as well as providing the clinician with information to help guide the consultation.

The use of the PCI has not increased substantially the length of consultation time (Rogers et al., 2009), but has allowed for a whole range of different issues led by the patient to enter into discussion at the consultation (Ghazali et al., 2013a). Its use has not lead to additional resource burden with more inter-departmental multidisciplinary referrals as it is appropriate for the majority of patients to have Multi Disciplinary Team (MDT) involvement during their cancer journey (Ghazali et al., 2011). The PCI has shown how common recurrence fears are and allows this subject to be more easily broached in the clinic setting (Ghazali et al., 2013b; Rogers et al., 2010). The PCI also helps in the identification of various concerns such as mood and anxiety (Kanatas et al., 2012a), appearance (Flexen et al., 2012), speech and swallowing (Ghazali et al., 2012), and pain (Rogers et al., 2012). It also identifies issues that are both common and also those that are different across the head and neck cancer tumour sites and stages (Kanatas et al., 2012b). The PCI is being developed in several other conditions such as Rheumatology (Moots and Rogers, 2011) and breast cancer (Kanatas et al., 2012c).

Though the PCI was devised to work within a clinical setting using touch-screen technology (TST) (Millsopp et al., 2006) it is recognised that many units may only be amenable to adopting a paper version of the PCI due to issues such as lack of Information Technology investment or equipment, limited space within the clinical setting, or lack of resources to trial the TST prior to purchasing equipment. Confidentiality and clinical governance issues may also hinder the progress from paper to TST with the PCI having to have restricted access, password and firewall protection, and to be available in computer programmes such as N3 and ACCESS.

The aim of this study was to use both paper and TST versions of the PCI and to see if there were any notable differences in terms of what issues were raised on the PCI by patients themselves and also in terms of what was discussed during the consultation.