Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: baseline results in a cluster preference randomised controlled trial

Simon N Rogers,Terry M Jones,Christopher Loh,Steven J Thomas,James Moor,Dominic Macareavy,Llinos Haf Spencer,Cher Lowies,Robert Flavel,Christine Allmark,Owais Khattak,Jeffrey Lancaster,Derek Lowe,Andrew Schache,Cherith Semple,Gerry Humphris ,Richard Shaw ,N J Roland ,Michael Ho ,Amit Prasai ,T.k Ong ,Sankalap Tandon ,G Fabbroni ,F Bekiroglu ,Rhiannon Tudor Edwards,Victoria Highet,Anastasios Kanatas

doi:10.1007/s00405-020-06077-6

Abstract

PurposeThe main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described.MethodsThis is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either ‘using' (n = 8) or ‘not using’ (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments).ResultsFrom 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71–162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from − 0.7 to + 2.2 min).ConclusionUsing the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.

Highlights

Following head and neck cancer (HNC) patients can experience substantial physical, emotional, and social dysfunction as post-treatment consequences effects many aspects with a detrimental impact on health-related quality of life (HRQOL) [1, 2]
There are various tools available to assist the clinician in the identification of potential unmet needs in the HNC setting, of which the Patient Concerns Inventory (PCI) is one
The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial

Summary

Introduction

Following head and neck cancer (HNC) patients can experience substantial physical, emotional, and social dysfunction as post-treatment consequences effects many aspects with a detrimental impact on health-related quality of life (HRQOL) [1, 2]. These in turn can lead to a significant burden of unmet supportive care needs [3]. The PCI is a conditionspecific item prompt list [6] and is based on the literature around the use of questionnaire prompt lists in consultations [7] It consists of 56 items, which patients select from before their appointment, to help guide the outpatient consultation, which covers a range of symptoms and potential problems individuals may confront after treatment. The PCI helps to focus the consultation, to aid doctor-patient communication,

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