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Variations in concerns reported on the patient concerns inventory in patients with head and neck cancer from different health settings across the world

Rogers SN 1 , Alvear A 2 , Anesi A 3 , Babin E 4 , Balik A 5 , Batstone M 6 Show all authors , Brockmeyer P 7 , Carrasco CC 2 , Chien CY 8 , Chirila M 9 , Dholam KP 10 , Doss JG 11 , Finizia C 12 , Ghani WMN 13 , Gurav SV 10 , Kadir K 14 , Kolator M 15 , Lima R 16 , Lin YT 8 , Nhongo S 6 , Ozdemir-Karatas M 5 , Peker K 17 , Pesic Z 18 , Ransy P 19 , Santos I 16 , Schliephake H 7 , Shah K 20 , Souza F 16 , Sunil G 21 , Thankappan K 21 , Ehrsson YT 22 , Tiple C 9 , Tuomi L 12 , Valerini S 23 , Lara PV 2 , Zatoński T 15 , Lowe D 24

Affiliations 

  • 1 Evidence-Based Practice Research Centre (EPRC), Faculty of Health and Social Care, Edge Hill University, Liverpool, UK
  • 2 Instituto Nacional del Cancer, Santiago, Chile
  • 3 Cranio-Maxillo-Facial Surgery Unit, University Hospital of Modena, Modena, Italy
  • 4 Hospital Côte de Nacre, ANTICIPE, University Caen-Normandy
  • 5 Department of Prosthodontics, Faculty of Dentistry, Istanbul University, Istanbul, Turkey
  • 6 Royal Brisbane and Women's Hospital, University of Queensland, Queensland, Australia
  • 7 Department of Oral and Maxillofacial Surgery, University Medical Centre, Goettingen, Germany
  • 8 Department of Otolaryngology, Kaohsiung Chang Gung Memorial Hospital and Chang Gung University College of Medicine, Kaohsiung, Taiwan
  • 9 Department of Otorhinolaryngology, Iuliu Hatieganu University of Medicine and Pharmacy Cluj-Napoca, Romania; Emergency County Hospital, Cluj-Napoca, Romania
  • 10 Department of Dental and Prosthetic Surgery, Tata Memorial Hospital, Homi Bhabha National Institute (HBNI), Mumbai, India
  • 11 Department of Community Oral Health & Clinical Prevention, University Malaya, Kuala Lumpur, Malaysia
  • 12 Department of Otorhinolaryngology, Head and Neck Surgery, Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Sahlgrenska University Hospital, Gothenburg, Sweden
  • 13 Oral Cancer Research & Coordinating Center, University of Malaya, Kuala Lumpur, Malaysia
  • 14 Department of Oro-Maxillofacial Surgical & Medical Sciences, University Malaya, Kuala Lumpur, Malaysia
  • 15 Department of Otolaryngology, Head and Neck Surgery, Wroclaw Medical University, Wrocław, Poland
  • 16 Brazilian National Health Institution, Rio de Janeiro, Brazil
  • 17 Division of Basic Sciences, Department of Dental Public Health, Faculty of Dentistry, Istanbul University, Istanbul, Turkey
  • 18 Department of Maxillofacial Surgery, Clinic of Dentistry, Medicine Faculty, University of Nis, Nis, Serbia
  • 19 Otorhinolaryngology-Head and Neck Surgery Department, C.H.U. Liege, Liège, Belgium
  • 20 Morriston Hospital, Swansea, UK
  • 21 Head and Neck Surgery and Oncology, Amrita Institute of Medical Sciences, Amrita Vishwa Vidyapeetham, Kochi, Kerala, India
  • 22 Department of Surgical Sciences, Section of Otorhinolaryngology and Head & Neck Surgery, Uppsala University, Uppsala, Sweden
  • 23 Department of Otolaryngology, University Hospital of Modena, Modena, Italy
  • 24 Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University, Ormskirk, UK
Head Neck, 2020 03;42(3):498-512.
PMID: 31833121 DOI: 10.1002/hed.26027

Abstract

BACKGROUND: The aim was to collate and contrast patient concerns from a range of different head and neck cancer follow-up clinics around the world. Also, we sought to explore the relationship, if any, between responses to the patient concerns inventory (PCI) and overall quality of life (QOL).

METHODS: Nineteen units participated with intention of including 100 patients per site as close to a consecutive series as possible in order to minimize selection bias.

RESULTS: There were 2136 patients with a median total number of PCI items selected of 5 (2-10). "Fear of the cancer returning" (39%) and "dry mouth" (37%) were most common. Twenty-five percent (524) reported less than good QOL.

CONCLUSION: There was considerable variation between units in the number of items selected and in overall QOL, even after allowing for case-mix variables. There was a strong progressive association between the number of PCI items and QOL.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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