It acts as a memory prompt to help patients address the issues that are important to them during the consultation. The PCI-H&N is completed just before to the consultation and allows patients to choose from a list of 56 items or issues that they would specifically like to mention or discuss at their consultation. The items are grouped together into five domains: physical and functional well-being (29 items), treatment related (3 items), social care and social well-being (9 items), psychological, emotional and spiritual well-being (14 items), other (1 item which is free text). Ideally each item identified by the patient should be discussed but if there are too many items selected it might be prudent to ask the patients to choose their top three or four priorities for that clinic or make arrangements for a longer consultation.
The Patient Concerns Inventory is a free tool for use in modern clinical practice.
There are currently two versions of the Head and Neck Cancer PCI.
This version has been specifically designed for patients who have been diagnosed, but not yet received treatment.
When diagnosed with cancer there is potentially a lot of information to take in. Some patients and family/carers like relatively little information other much more. It is very hard to get the amount of information right and it needs to be tailored for each individual patient. Also the information needs to be at the 'right' time for the patient and this can be both before treatment and at any time after treatment.
Also we need to get the context and format of the information right, having said that there is arguably nothing better than one to one advice with the clinical team (consultant oncologist, consultant surgeon, Clinical Nurse Specialist, Emotional Support therapist, Clinical Psychologist, Speech and Language Therapist, Dietician, Oral Rehabilitation/ dentist etc. Ideally the information needs to be specific as possible to the individual, the cancer site, type, and treatment.
To try to help facilitate the sharing of information with patients at the most appropriate time for them we developed a PCI-pre-treatment (diagnosis). This can be given to the patient at diagnosis and used as often as necessary by the patient in any of the subsequent consultations / hospital visits.
The PCI HaNC-PT consists of 57 clinical and other items which patients are asked to select to help guide their outpatient consultation through the symptoms and problems that they are experiencing following treatment for head and neck cancer. It helps to direct the consultation and can act as a trigger for on-ward referral for areas of patient concern.
Following extensive research we have discovered that;
It generally provides tremendous support from patient, nurse, and consultants.
The vast majority of patients wish to carry on using the PCI
It was easy to adopt in clinic with minimal disruption to the routine out-patient review consultations.
It makes the consultations more holistic and help patients to raise issues that otherwise tend to be missed.
It increases patient satisfaction with consultations.
It raises patients expectations but these are met through he use of the PCI.
Most issues are addressed in clinic with only a relatively small number needing formal new onward referral.
There is no restriction to the use of the PCI by colleagues however please remember that the copyright and intellectual property remains with Edge Hill University and Aintree University Hospital. Although we would not encourage adding new items, colleagues could try this if they feel strongly an item is missing, but please include this as part of an audit and feedback to us the reason behind including the item and any 'evidence' that patients felt it necessary to add it to the current 57 item PCI.
PCI-H&N (oral rehab)
Prof Maria Lucia Aguilar (MAGUILAR@dental.ufl.edu)
Prof L. P Kowalski and Mrs Ivy Jungman (firstname.lastname@example.org)
PCI-oral rehabilitation and implantology
Prof Dr Zoran Pesic, Professor of Maxillofacial Surgery, University of Nis Medical School, Serbia, (email@example.com)
Dr Daniel Harman (Daniel.Harman@hey.nhs.uk) and Mr Ian Harvey.
Prof Galina Velikova (G.Velikova@leeds.ac.uk) and Mr Anastasios Kanatas (firstname.lastname@example.org)
Prof Rob Moots (R.J.Moots@liverpool.ac.uk)
Prof Simon N Rogers (email@example.com)
Marina Anderson (Marina.Anderson@liverpool.ac.uk)
Paula Pyrkotsch (Paula.Pyrkotsch@liverpool.ac.uk)
Prof Jennifer G Doss (firstname.lastname@example.org) and Miss Julie Mashita
Dr Cherith Semple <email@example.com>
Dr Robin Grant (Robin.Grant@luht.scot.nhs.uk) and Dr Ally Rooney Ally (firstname.lastname@example.org)
Dr Mary Wells (email@example.com)
Victoria Hospital, Kirkcaldy
Steve Leung (NHS FIFE) (firstname.lastname@example.org)
PUBLISHED or IN PRESS
1. Rogers SN, El-Sheikha J, Lowe D. The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic.Oral Oncol. 2009; 45: 555-561.
2. Rogers SN, Scott B, Lowe D, Ozakinci G, Humphris GM. Fear of recurrence following head and neck cancer in the outpatient clinic. Eur Arch Otorhinolaryngol. 2010 Dec;267(12):1943-9.
3. Ghazali N and Rogers SN. The Head and Neck Cancer Patient Concerns Inventory (PCI): A Practical Holistic Assessment Tool in Outpatient Setting. PRO Newsletter #45 (Spring 2011)
4. Rogers SN. How developments in Maxillofacial Surgery have contributed to improved quality of life for patients. ENT & Audiology News 2011; 20: 46-48.
5. Ghazali N, Kanatas A, Langley DJ, Scott B, Lowe D, Rogers SN. Treatment referral before and after the introduction of the Liverpool Patients Concerns Inventory (PCI) into routine head and neck oncology outpatient clinics.Support Care Cancer. 2011 Nov;19(11):1879-86.
6. Rogers SN. Clifford N, Lowe D. Patient and carer unmet needs: a Survey of the British Association of Head and Neck Oncology Nurses. .BJOMS 2011; 49: 343-348.
7. Moots RJ, Rogers SN. Rheumatology today and in the future. Rheumatology (Oxford). 2011 Dec;50(12):2149-50.
8. Ghazali N, Rogers SN. Identifying Undisclosed Concerns and needs using the Pateint Concerns Inventory (PCI). Oncology News 2012; 6: 195-198.
9. Kanatas A, Ghazali N, Lowe D, Rogers SN. The identification of mood and anxiety concerns using the patients concerns inventory following head and neck cancer. Int J Oral Maxillofac Surg. 2012 Jan 18. [Epub ahead of print]
10. Flexen J, Ghazali N, Lowe D, Rogers SN. Identifying appearance-related concerns in routine follow-up clinics following treatment for oral and oropharyngeal cancer. Br J Oral Maxillofac Surg. 2012; 50: 314-320
11. Ghazali N, Cadwallader E, Lowe D, Humphris G, Ozakinci G, Rogers SN. Fear of recurrence among head and neck cancer survivors: longitudinal trends. Psychooncology. 2012 Mar 27. doi: 10.1002/pon.3069. [Epub ahead of print]
12. Ghazali N, Lowe D, Rogers SN. Enhanced patient reported outcome measurement suitable for head and neck cancer follow-up clinics. Head & Neck Oncology 2012, 4:32
13. Rogers SN, Lowe D. An evaluation of the Head and Neck Cancer Patient Concerns Inventory across the Merseyside and Cheshire Network. Br J Oral Maxillofac Surg. 2014 Sep;52(7):615-23. doi: 10.1016/j.bjoms.2014.04.011. Epub 2014 Jun 11. PubMed PMID: 24927654.
14. Mahmood R, Butterworth C, Lowe D, Rogers SN. Characteristics and referral of head and neck cancer patients who report chewing and dental issues on the Patient Concerns Inventory. Br Dent J. 2014 Jun 13;216(11):E25. doi: 10.1038/sj.bdj.2014.453. PubMed PMID: 24923963.
15. Rogers SN, Hazeldine P, O'Brien K, Lowe D, Roe B. How often do head and neck cancer patients raise concerns related to intimacy and sexuality in routine follow-up clinics? Eur Arch Otorhinolaryngol. 2014 Mar 14. [Epub ahead of print] PubMed PMID: 24627075.
16. Rooney AG, Netten A, McNamara S, Erridge S, Peoples S, Whittle I, Hacking B, Grant R. Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic. Support Care Cancer. 2014 Apr;22(4):1059-69. doi: 10.1007/s00520-013-2058-2. Epub 2013 Nov 29. PubMed PMID: 24292015.
17. Hatta JM, Doss JG, Rogers SN. The feasibility of using Patients Concerns Inventory (PCI) in managing Malaysian oral cancer patients. Int J Oral MaxillofacSurg. 2014 Feb;43(2):147-55. doi: 10.1016/j.ijom.2013.08.006. Epub 2013 Sep 25. PubMed PMID: 24074487.
18. Scott B, Ghazali N, Lowe D, Bekiroglu F, Rogers SN. The Patients Concerns Inventory in head and neck cancer: comparison between self-completed paper and touch screen versions in the clinic setting. Eur J Oncol Nurs. 2013 Dec;17(6):863-9. doi: 10.1016/j.ejon.2013.05.002. Epub 2013 May 31. PubMed PMID: 23732013.
19. Ghazali N, Roe B, Lowe D, Rogers SN. Uncovering patients' concerns in routine head and neck oncology follow up clinics: an exploratory study. Br J OralMaxillofac Surg. 2013 Jun;51(4):294-300. doi: 10.1016/j.bjoms.2012.08.002. Epub2012 Aug 24. PubMed PMID: 22922097.
20. Rogers SN, Cleator AJ, Lowe D, Ghazali N. Identifying pain-related concerns in routine follow-up clinics following oral and oropharyngeal cancer. World J ClinOncol. 2012 Aug 10;3(8):116-25. doi: 10.5306/wjco.v3.i8.116. PubMed PMID:22905338; PubMed Central PMCID: PMC3421024.
21. Kanatas A, Ghazali N, Lowe D, Udberg M, Heseltine J, O'Mahony E, Rogers SN. Issues patients would like to discuss at their review consultation: variation by early and late stage oral, oropharyngeal and laryngeal subsites. Eur ArchOtorhinolaryngol. 2013 Mar;270(3):1067-74. doi: 10.1007/s00405-012-2092-6. Epub 2012 Jun 29. PubMed PMID: 22743645.
22. Ghazali N, Lowe D, Rogers SN. Enhanced patient reported outcome measurement suitable for head and neck cancer follow-up clinics. Head Neck Oncol. 2012 Jun 13;4:32. PubMed PMID: 22695251; PubMed Central PMCID: PMC3448513.
23. Ghazali N, Cadwallader E, Lowe D, Humphris G, Ozakinci G, Rogers SN. Fear of recurrence among head and neck cancer survivors: longitudinal trends.Psychooncology. 2013 Apr;22(4):807-13. doi: 10.1002/pon.3069. Epub 2012 Mar 27. PubMed PMID: 22451036.
24. Kanatas A, Ghazali N, Lowe D, Rogers SN. The identification of mood and anxiety concerns using the patients concerns inventory following head and neck cancer. Int J Oral Maxillofac Surg. 2012 Apr;41(4):429-36. doi: 10.1016/j.ijom.2011.12.021. Epub 2012 Jan 20. PubMed PMID: 22264641.
25. Ghazali N, Kanatas A, Langley DJ, Scott B, Lowe D, Rogers SN. Treatment referral before and after the introduction of the Liverpool Patients Concerns Inventory (PCI) into routine head and neck oncology outpatient clinics. Support Care Cancer. 2011 Nov;19(11):1879-86. doi: 10.1007/s00520-011-1222-9. Epub 2011 Jul 3. PubMed PMID: 21725827.
26. Flexen J, Ghazali N, Lowe D, Rogers SN. Identifying appearance-related concerns in routine follow-up clinics following treatment for oral and oropharyngeal cancer. Br J Oral Maxillofac Surg. 2012 Jun;50(4):314-20. doi:10.1016/j.bjoms.2011.05.005. Epub 2011 Jun 15. PubMed PMID: 21680066.
27. Rogers SN, Scott B, Lowe D, Ozakinci G, Humphris GM. Fear of recurrence following head and neck cancer in the outpatient clinic. Eur Arch Otorhinolaryngol. 2010 Dec;267(12):1943-9. doi: 10.1007/s00405-010-1307-y. Epub 2010 Jun 27. PubMed PMID: 20582704.
28. Rogers SN, El-Sheikha J, Lowe D. The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic. Oral Oncol. 2009 Jul;45(7):555-61. doi: 10.1016/j.oraloncology.2008.09.004. Epub 2008 Nov 22. PubMed PMID: 19028135.
29. Ghazali N, Kanatas A, Scott B, Lowe D, Zuydam A, Rogers SN The Use of Patients Concerns Inventory (PCI) in Identification of Speech and Swallowing Problems Following Treatment for Oral and Oropharyngeal Cancer. The Journal of Laryngology & Otology.
30. Ghazali N, Roe B, Lowe D, .Rogers SN Uncovering patients agendas in routine head and neck oncology follow-up clinics: an exploratory study. Manuscript number: BJOMS-D-12-00134R1
31. Kanatas A, Ghazali N, Lowe D, Udberg M, Heseltine J, O'Mahony E, Rogers SN.Issues patients would like to discuss at their review consultation: variation by early and late stage oral, oropharyngeal and laryngeal subsites. European Archives of Oto-Rhino-Laryngology and Head & Neck. Ref.: Ms. No. EAORL-D-12-00297
32. Kanatas A, Velikova G, Roe B, Horgan K, Ghazali N, Shaw RJ, Rogers SN. Patient Reported Outcomes in Breast Oncology- A Systematic Review of Validated Outcome Instruments. Tumori.
33. PCI-Faz: Introduction of the PCI H&N into a consultants clinic: a before and after pilot study (Annals RCS Eng)
34. Rogers SN, Cleator AJ, D Lowe D, N Ghazali N. Identifying Pain-related Concerns in Routine Follow-up Clinics Following Treatment for Oral and Oropharyngeal Cancer. World Journal of Clinical Oncology.