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. 2020 Mar;42(3):498-512.
doi: 10.1002/hed.26027. Epub 2019 Dec 13.

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

Simon N Rogers  1   2 , Alvaro Alvear  3 , Alexandre Anesi  4 , Emmanuel Babin  5 , Ali Balik  6 , Martin Batstone  7 , Phillipp Brockmeyer  8 , Claudia Celedon Carrasco  3 , Chih-Yen Chien  9 , Magdalena Chirila  10 , Kanchan P Dholam  11 , Jennifer G Doss  12   13 , Caterina Finizia  14 , Wan M Nabilah Ghani  13 , Sandeep V Gurav  11 , Kathreena Kadir  15 , Mateusz Kolator  16 , Roberto Lima  17 , Yu-Tsai Lin  9 , Simon Nhongo  7 , Meltem Ozdemir-Karatas  6 , Kadriye Peker  18 , Zoran Pesic  19 , Pierre Ransy  20 , Izabella Santos  17 , Henning Schliephake  8 , Ketan Shah  21 , Fernanda Souza  17 , Geethu Sunil  22 , Krishnakumar Thankappan  22 , Ylva Tiblom Ehrsson  23 , Cristina Tiple  10 , Lisa Tuomi  14 , Sara Valerini  24 , Pablo Vasquez Lara  3 , Tomasz Zatoński  16 , Derek Lowe  25
Affiliations

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

Simon N Rogers et al. Head Neck. 2020 Mar.

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.

Keywords: head and neck cancer; patient concerns inventory; patient prompt list; quality of life.

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Conflict of interest statement

The authors declare no potential conflict of interest.

Figures

Figure 1
Figure 1
Box‐plot showing unit variation in total number of patient concerns inventory (PCI) items selected. The PCI contains 56 items. An asterisk represents a value more than 3 box lengths from the upper or lower edge of the box, while a circle marks a value between 1.5 and 3 box lengths away from the box [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 2
Figure 2
Unit variation in the mean number of patient concerns inventory (PCI) items selected, total, and by PCI domain. The PCI contains 56 items [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 3
Figure 3
Funnel plot showing the percentage of patients selecting six or more patient concerns inventory items plotted against sample size, first unadjusted and second adjusted for case‐mix*. (*) Adjusted for age (<55, 55‐64, 65‐74, ≥75), sex (men, women), clinical stage (early T1N0, T2N0) or late), site (oral, oropharynx, larynx, other), treatment (surgery alone, radiotherapy, and/or chemotherapy in the absence of surgery, surgery combined with radiotherapy, and/or chemotherapy) and months from primary diagnosis (<12, 12‐23, 24‐59, ≥60) [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 4
Figure 4
Funnel plot showing the adjusted* percentage of patients in each of the 18 units that selected more than the median number of patient concerns inventory items in each domain, plotted against sample size. (*) Adjusted for case‐mix (known for 2053): Age (<55, 55‐64, 65‐74, ≥75), sex (men, women), clinical stage (Early T1N0, T2N0) or late), site (oral, oropharynx, larynx, other), treatment (surgery alone, radiotherapy, and/or chemotherapy in the absence of surgery, surgery combined with radiotherapy, and/or chemotherapy) and months from primary diagnosis (<12, 12‐23, 24‐59, ≥60) [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 5
Figure 5
Patient concerns inventory items selected overall in the study sample of 2136 patients [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 6
Figure 6
Funnel plot showing the percentage of patients reporting less than good overall quality of life, first unadjusted and second adjusted for case‐mix*. (*) Adjusted for case‐mix (known for 2213): age (<55, 55‐64, 65‐74, ≥75), sex (men, women), clinical stage (early T1N0, T2N0) or late), site (oral, oropharynx, larynx, other), treatment (surgery alone, radiotherapy, and/or chemotherapy in the absence of surgery, surgery combined with radiotherapy, and/or chemotherapy) and months from primary diagnosis (<12, 12‐23, 24‐59, ≥60) [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 7
Figure 7
Association between the total number of PCI items selected and the percentage of patients reporting less than good overall QOL (n = 2099, 19 units). PCI, patient concerns inventory; QOL, quality of life [Color figure can be viewed at http://wileyonlinelibrary.com]
Figure 8
Figure 8
Association between the total number of PCI items selected within each PCI domain and the percentage of patients reporting less than good overall QOL (n = 2099, 19 units). PCI, patient concerns inventory; QOL, quality of life [Color figure can be viewed at http://wileyonlinelibrary.com]
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References

    1. Fitzmaurice C, Allen C, Barber RM, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability‐adjusted life‐years for 32 cancer groups, 1990 to 2015: a systematic analysis for the global burden of disease study. JAMA Oncol. 2017;3(4):524‐548. - PMC - PubMed
    1. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68(6):394‐424. - PubMed
    1. Chaturvedi AK, Anderson WF, Lortet‐Tieulent J, et al. Worldwide trends in incidence rates for oral cavity and oropharyngeal cancers. J Clin Oncol. 2013;31(36):4550‐4559. - PMC - PubMed
    1. Handle on QOL. http://www.handle-on-qol.com/Search+the+database.aspx
    1. Martinelli F, Quinten C, Maringwa JT, et al. European Organisation for Research and Treatment of Cancer Clinical Groups. Examining the relationships among health‐related quality‐of‐life indicators in cancer patients participating in clinical trials: a pooled study of baseline EORTC QLQ‐C30 data. Expert Rev Pharmacoecon Outcomes Res. 2011;11(5):587‐599. - PubMed