Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study

E Koffi; C S Padilla; C Drabbe; W H Schreuder; C Zemouri; D den Hollander; D J Grünhagen; S Sodergren; S Singer; R L Jones; I M E Desar; L Fauske; M Pinto; I Nixon; S Salah; Ø S Bruland; V L M N Soomers; M A J van de Sande; J J de Haan; C Verhoef; L C Steggink; W J van Houdt; T I Bootsma; M T Tesselaar; W T A van der Graaf; O Husson

doi:10.1002/hed.28226

Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study

E Koffi
, C S Padilla^*
, C Drabbe
, W H Schreuder
, C Zemouri
, D den Hollander
, D J Grünhagen
, S Sodergren
, S Singer
, R L Jones
, I M E Desar
, L Fauske
, M Pinto
, I Nixon
, S Salah
, Ø S Bruland
, V L M N Soomers
, M A J van de Sande
, J J de Haan
, C Verhoef

L C Steggink, W J van Houdt, T I Bootsma, M T Tesselaar, W T A van der Graaf, O Husson

^*Corresponding author for this work

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

Abstract

BACKGROUND: Patients with head and neck sarcomas (HNS) face unique health-related quality of life (HRQoL) challenges due to its disease rarity. This study examined and identified the prevalence of generic- and location-specific HRQoL issues. METHODS: Quantitative data from 72 HNS survivors (SURVSARC study), and qualitative data from 18 HNS patients (EORTC QoL VOICE study) were examined. Descriptive statistics was used for questionnaire data. Qualitative data was thematically analyzed. RESULTS: Quantitative findings showed fatigue (68%), speaking issues (50%), and dry mouth (48%) as common problems. Qualitative findings supported quantitative results and highlighted HNS-specific issues, including throat pain, impaired tongue mobility, and swelling in the face and neck. CONCLUSION: HNS patients share symptoms with other cancers, but location-specific issues, such as lack of tongue mobility, require tailored measurement strategies. Combining generic (EORTC QLQ-C30), location-specific (EORTC QLQ-H&N43) questionnaires, and an HNS-specific item list provides a comprehensive HRQoL assessment for future research and clinical practice.

Original language	English
Pages (from-to)	3086-3097
Number of pages	12
Journal	Head and Neck-Journal for the Sciences and Specialties of the Head and Neck
Volume	47
Issue number	11
Early online date	29 Jun 2025
DOIs	https://doi.org/10.1002/hed.28226
Publication status	Published - Nov 2025

Keywords

head and neck
health-related quality of life
mixed-method study
rare cancer
sarcomas

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Koffi, E., Padilla, C. S., Drabbe, C., Schreuder, W. H., Zemouri, C., den Hollander, D., Grünhagen, D. J., Sodergren, S., Singer, S., Jones, R. L., Desar, I. M. E., Fauske, L., Pinto, M., Nixon, I., Salah, S., Bruland, Ø. S., Soomers, V. L. M. N., van de Sande, M. A. J., de Haan, J. J., ... Husson, O. (2025). Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study. Head and Neck-Journal for the Sciences and Specialties of the Head and Neck, 47(11), 3086-3097. https://doi.org/10.1002/hed.28226

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title = "Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study",

abstract = "BACKGROUND: Patients with head and neck sarcomas (HNS) face unique health-related quality of life (HRQoL) challenges due to its disease rarity. This study examined and identified the prevalence of generic- and location-specific HRQoL issues. METHODS: Quantitative data from 72 HNS survivors (SURVSARC study), and qualitative data from 18 HNS patients (EORTC QoL VOICE study) were examined. Descriptive statistics was used for questionnaire data. Qualitative data was thematically analyzed. RESULTS: Quantitative findings showed fatigue (68\%), speaking issues (50\%), and dry mouth (48\%) as common problems. Qualitative findings supported quantitative results and highlighted HNS-specific issues, including throat pain, impaired tongue mobility, and swelling in the face and neck. CONCLUSION: HNS patients share symptoms with other cancers, but location-specific issues, such as lack of tongue mobility, require tailored measurement strategies. Combining generic (EORTC QLQ-C30), location-specific (EORTC QLQ-H\&N43) questionnaires, and an HNS-specific item list provides a comprehensive HRQoL assessment for future research and clinical practice.",

keywords = "head and neck, health-related quality of life, mixed-method study, rare cancer, sarcomas",

author = "E Koffi and Padilla, \{C S\} and C Drabbe and Schreuder, \{W H\} and C Zemouri and \{den Hollander\}, D and Gr{\"u}nhagen, \{D J\} and S Sodergren and S Singer and Jones, \{R L\} and Desar, \{I M E\} and L Fauske and M Pinto and I Nixon and S Salah and Bruland, \{{\O} S\} and Soomers, \{V L M N\} and \{van de Sande\}, \{M A J\} and \{de Haan\}, \{J J\} and C Verhoef and Steggink, \{L C\} and \{van Houdt\}, \{W J\} and Bootsma, \{T I\} and Tesselaar, \{M T\} and \{van der Graaf\}, \{W T A\} and O Husson",

year = "2025",

month = nov,

doi = "10.1002/hed.28226",

language = "English",

volume = "47",

pages = "3086--3097",

journal = "Head and Neck-Journal for the Sciences and Specialties of the Head and Neck",

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Koffi, E, Padilla, CS, Drabbe, C, Schreuder, WH, Zemouri, C, den Hollander, D, Grünhagen, DJ, Sodergren, S, Singer, S, Jones, RL, Desar, IME, Fauske, L, Pinto, M, Nixon, I, Salah, S, Bruland, ØS, Soomers, VLMN, van de Sande, MAJ, de Haan, JJ, Verhoef, C, Steggink, LC, van Houdt, WJ, Bootsma, TI, Tesselaar, MT, van der Graaf, WTA & Husson, O 2025, 'Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study', Head and Neck-Journal for the Sciences and Specialties of the Head and Neck, vol. 47, no. 11, pp. 3086-3097. https://doi.org/10.1002/hed.28226

TY - JOUR

T1 - Health-Related Quality of Life in Patients With a Head and Neck Sarcoma

T2 - A Mixed-Methods Study

AU - Koffi, E

AU - Padilla, C S

AU - Drabbe, C

AU - Schreuder, W H

AU - Zemouri, C

AU - den Hollander, D

AU - Grünhagen, D J

AU - Sodergren, S

AU - Singer, S

AU - Jones, R L

AU - Desar, I M E

AU - Fauske, L

AU - Pinto, M

AU - Nixon, I

AU - Salah, S

AU - Bruland, Ø S

AU - Soomers, V L M N

AU - van de Sande, M A J

AU - de Haan, J J

AU - Verhoef, C

AU - Steggink, L C

AU - van Houdt, W J

AU - Bootsma, T I

AU - Tesselaar, M T

AU - van der Graaf, W T A

AU - Husson, O

PY - 2025/11

Y1 - 2025/11

N2 - BACKGROUND: Patients with head and neck sarcomas (HNS) face unique health-related quality of life (HRQoL) challenges due to its disease rarity. This study examined and identified the prevalence of generic- and location-specific HRQoL issues. METHODS: Quantitative data from 72 HNS survivors (SURVSARC study), and qualitative data from 18 HNS patients (EORTC QoL VOICE study) were examined. Descriptive statistics was used for questionnaire data. Qualitative data was thematically analyzed. RESULTS: Quantitative findings showed fatigue (68%), speaking issues (50%), and dry mouth (48%) as common problems. Qualitative findings supported quantitative results and highlighted HNS-specific issues, including throat pain, impaired tongue mobility, and swelling in the face and neck. CONCLUSION: HNS patients share symptoms with other cancers, but location-specific issues, such as lack of tongue mobility, require tailored measurement strategies. Combining generic (EORTC QLQ-C30), location-specific (EORTC QLQ-H&N43) questionnaires, and an HNS-specific item list provides a comprehensive HRQoL assessment for future research and clinical practice.

AB - BACKGROUND: Patients with head and neck sarcomas (HNS) face unique health-related quality of life (HRQoL) challenges due to its disease rarity. This study examined and identified the prevalence of generic- and location-specific HRQoL issues. METHODS: Quantitative data from 72 HNS survivors (SURVSARC study), and qualitative data from 18 HNS patients (EORTC QoL VOICE study) were examined. Descriptive statistics was used for questionnaire data. Qualitative data was thematically analyzed. RESULTS: Quantitative findings showed fatigue (68%), speaking issues (50%), and dry mouth (48%) as common problems. Qualitative findings supported quantitative results and highlighted HNS-specific issues, including throat pain, impaired tongue mobility, and swelling in the face and neck. CONCLUSION: HNS patients share symptoms with other cancers, but location-specific issues, such as lack of tongue mobility, require tailored measurement strategies. Combining generic (EORTC QLQ-C30), location-specific (EORTC QLQ-H&N43) questionnaires, and an HNS-specific item list provides a comprehensive HRQoL assessment for future research and clinical practice.

KW - head and neck

KW - health-related quality of life

KW - mixed-method study

KW - rare cancer

KW - sarcomas

U2 - 10.1002/hed.28226

DO - 10.1002/hed.28226

M3 - Article

SN - 1043-3074

VL - 47

SP - 3086

EP - 3097

JO - Head and Neck-Journal for the Sciences and Specialties of the Head and Neck

JF - Head and Neck-Journal for the Sciences and Specialties of the Head and Neck

IS - 11

ER -

Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study

Abstract

Keywords

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