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

Simon Rogers; Christine Allmark; Fazilet Bekiroglu; Rhiannon Tudor Edwards; Gillon Fabbroni; Robert  Flavel; Victoria Highet; Michael W S Ho; Gerald M. Humphris; Terry M. Jones; Owais Khattak; Jeffrey Lancaster; Christopher Loh; Derek Lowe; Cher Lowies; Dominic Macareavey; James Moor; T. K. Ong; A Prasal; Nicholas Roland; Cherith Semple; Lllnos  Haf Spenser; Sank Tandon; Steven J Thomas; Andrew Schache; Richard J. Shaw; Anastasios Kanatas

doi:10.1007/s00405-020-06533-3

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

Simon Rogers, Christine Allmark, Fazilet Bekiroglu, Rhiannon Tudor Edwards, Gillon Fabbroni, Robert Flavel, Victoria Highet, Michael W S Ho, Gerald M. Humphris, Terry M. Jones, Owais Khattak, Jeffrey Lancaster, Christopher Loh, Derek Lowe, Cher Lowies, Dominic Macareavey, James Moor, T. K. Ong, A Prasal, Nicholas RolandCherith Semple, Lllnos Haf Spenser, Sank Tandon, Steven J Thomas, Andrew Schache, Richard J. Shaw, Anastasios Kanatas

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Abstract

Purpose The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss
issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics
for one year after treatment on health-related QOL (HRQOL).
Methods A pragmatic cluster preference randomised control trial with 15 consultants, 8 ‘using’ and 7 ‘not using’ the PCI
intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible.
Results Consultants saw a median (inter-quartile range) 16 (13–26) patients, with 140 PCI and 148 control patients. Of the
pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) socialemotional
subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full
adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary
outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (− 2.9%, 12.9%) but
without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant
level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected
decreased over time.
Conclusion This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means
of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.

Original language	English
Journal	European Archives of Oto-Rhino-Laryngology
Early online date	21 Dec 2020
DOIs	https://doi.org/10.1007/s00405-020-06533-3
Publication status	E-pub ahead of print - 21 Dec 2020

Keywords

Head and neck cancer
Patient concerns inventory
quality of life
patient-reported outcome
intervention
randomised trial

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Rogers, S., Allmark, C., Bekiroglu, F., Edwards, R. T., Fabbroni, G., Flavel, R., Highet, V., Ho, M. W. S., Humphris, G. M., Jones, T. M., Khattak, O., Lancaster, J., Loh, C., Lowe, D., Lowies, C., Macareavey, D., Moor, J., Ong, T. K., Prasal, A., ... Kanatas, A. (2020). Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial. European Archives of Oto-Rhino-Laryngology. https://doi.org/10.1007/s00405-020-06533-3

Rogers, Simon ; Allmark, Christine ; Bekiroglu, Fazilet ; Edwards, Rhiannon Tudor ; Fabbroni, Gillon ; Flavel, Robert ; Highet, Victoria ; Ho, Michael W S ; Humphris, Gerald M. ; Jones, Terry M. ; Khattak, Owais ; Lancaster, Jeffrey ; Loh, Christopher ; Lowe, Derek ; Lowies, Cher ; Macareavey, Dominic ; Moor, James ; Ong, T. K. ; Prasal, A ; Roland, Nicholas ; Semple, Cherith ; Haf Spenser, Lllnos ; Tandon, Sank ; Thomas, Steven J ; Schache, Andrew ; Shaw, Richard J. ; Kanatas, Anastasios. / Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial. In: European Archives of Oto-Rhino-Laryngology. 2020.

@article{19150400631547b686a958a24704b3bd,

title = "Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial",

abstract = "Purpose The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discussissues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinicsfor one year after treatment on health-related QOL (HRQOL).Methods A pragmatic cluster preference randomised control trial with 15 consultants, 8 {\textquoteleft}using{\textquoteright} and 7 {\textquoteleft}not using{\textquoteright} the PCIintervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible.Results Consultants saw a median (inter-quartile range) 16 (13–26) patients, with 140 PCI and 148 control patients. Of thepre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) socialemotionalsubscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after fulladjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primaryoutcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (− 2.9%, 12.9%) butwithout achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultantlevel also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selecteddecreased over time.Conclusion This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost meansof benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.",

keywords = "Head and neck cancer, Patient concerns inventory, quality of life, patient-reported outcome, intervention, randomised trial",

author = "Simon Rogers and Christine Allmark and Fazilet Bekiroglu and Edwards, {Rhiannon Tudor} and Gillon Fabbroni and Robert Flavel and Victoria Highet and Ho, {Michael W S} and Humphris, {Gerald M.} and Jones, {Terry M.} and Owais Khattak and Jeffrey Lancaster and Christopher Loh and Derek Lowe and Cher Lowies and Dominic Macareavey and James Moor and Ong, {T. K.} and A Prasal and Nicholas Roland and Cherith Semple and {Haf Spenser}, Lllnos and Sank Tandon and Thomas, {Steven J} and Andrew Schache and Shaw, {Richard J.} and Anastasios Kanatas",

note = "Funding Information: This trial is funded by the RfPB on behalf of the NIHR (PB-PG-0215-36047). This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. This trial is funded by the RfPB on behalf of the NIHR (PB-PG-0215-36047). Funding Information: This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. In addition, this research was supported by the National Institute for Health Research (NIHR) infrastructure at Leeds (DenTCRU|). Publisher Copyright: {\textcopyright} 2020, The Author(s). Copyright: Copyright 2020 Elsevier B.V., All rights reserved.",

year = "2020",

month = dec,

day = "21",

doi = "10.1007/s00405-020-06533-3",

language = "English",

journal = "European Archives of Oto-Rhino-Laryngology",

issn = "0937-4477",

publisher = "Springer Verlag",

}

Rogers, S, Allmark, C, Bekiroglu, F, Edwards, RT, Fabbroni, G, Flavel, R, Highet, V, Ho, MWS, Humphris, GM, Jones, TM, Khattak, O, Lancaster, J, Loh, C, Lowe, D, Lowies, C, Macareavey, D, Moor, J, Ong, TK, Prasal, A, Roland, N, Semple, C, Haf Spenser, L, Tandon, S, Thomas, SJ, Schache, A, Shaw, RJ & Kanatas, A 2020, 'Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial', European Archives of Oto-Rhino-Laryngology. https://doi.org/10.1007/s00405-020-06533-3

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial. / Rogers, Simon; Allmark, Christine; Bekiroglu, Fazilet; Edwards, Rhiannon Tudor; Fabbroni, Gillon; Flavel, Robert ; Highet, Victoria; Ho, Michael W S; Humphris, Gerald M.; Jones, Terry M.; Khattak, Owais; Lancaster, Jeffrey; Loh, Christopher; Lowe, Derek; Lowies, Cher; Macareavey, Dominic; Moor, James; Ong, T. K.; Prasal, A; Roland, Nicholas; Semple, Cherith; Haf Spenser, Lllnos ; Tandon, Sank; Thomas, Steven J; Schache, Andrew; Shaw, Richard J.; Kanatas, Anastasios.

In: European Archives of Oto-Rhino-Laryngology, 21.12.2020.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial

AU - Rogers, Simon

AU - Allmark, Christine

AU - Bekiroglu, Fazilet

AU - Edwards, Rhiannon Tudor

AU - Fabbroni, Gillon

AU - Flavel, Robert

AU - Highet, Victoria

AU - Ho, Michael W S

AU - Humphris, Gerald M.

AU - Jones, Terry M.

AU - Khattak, Owais

AU - Lancaster, Jeffrey

AU - Loh, Christopher

AU - Lowe, Derek

AU - Lowies, Cher

AU - Macareavey, Dominic

AU - Moor, James

AU - Ong, T. K.

AU - Prasal, A

AU - Roland, Nicholas

AU - Semple, Cherith

AU - Haf Spenser, Lllnos

AU - Tandon, Sank

AU - Thomas, Steven J

AU - Schache, Andrew

AU - Shaw, Richard J.

AU - Kanatas, Anastasios

N1 - Funding Information: This trial is funded by the RfPB on behalf of the NIHR (PB-PG-0215-36047). This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. This trial is funded by the RfPB on behalf of the NIHR (PB-PG-0215-36047). Funding Information: This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. In addition, this research was supported by the National Institute for Health Research (NIHR) infrastructure at Leeds (DenTCRU|). Publisher Copyright: © 2020, The Author(s). Copyright: Copyright 2020 Elsevier B.V., All rights reserved.

PY - 2020/12/21

Y1 - 2020/12/21

N2 - Purpose The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discussissues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinicsfor one year after treatment on health-related QOL (HRQOL).Methods A pragmatic cluster preference randomised control trial with 15 consultants, 8 ‘using’ and 7 ‘not using’ the PCIintervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible.Results Consultants saw a median (inter-quartile range) 16 (13–26) patients, with 140 PCI and 148 control patients. Of thepre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) socialemotionalsubscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after fulladjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primaryoutcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (− 2.9%, 12.9%) butwithout achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultantlevel also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selecteddecreased over time.Conclusion This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost meansof benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.

AB - Purpose The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discussissues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinicsfor one year after treatment on health-related QOL (HRQOL).Methods A pragmatic cluster preference randomised control trial with 15 consultants, 8 ‘using’ and 7 ‘not using’ the PCIintervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible.Results Consultants saw a median (inter-quartile range) 16 (13–26) patients, with 140 PCI and 148 control patients. Of thepre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) socialemotionalsubscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after fulladjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primaryoutcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (− 2.9%, 12.9%) butwithout achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultantlevel also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selecteddecreased over time.Conclusion This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost meansof benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.

KW - Head and neck cancer

KW - Patient concerns inventory

KW - quality of life

KW - patient-reported outcome

KW - intervention

KW - randomised trial

UR - https://link.springer.com/article/10.1007/s00405-020-06533-3

U2 - 10.1007/s00405-020-06533-3

DO - 10.1007/s00405-020-06533-3

M3 - Article

JO - European Archives of Oto-Rhino-Laryngology

JF - European Archives of Oto-Rhino-Laryngology

SN - 0937-4477

ER -