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Cited by 21Cancer survivorship and careNursing care and researchHead and Neck Cancer Studies

Disparity of perception of quality of life between head and neck cancer patients and caregivers

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Kassir, Zachary M., Li, Jinhong, Harrison, Christine, Johnson, Jonas T., Nilsen, Marci L.·2021·BMC Cancer
DOI 10.1186/s12885-021-08865-7PMC PMC8527693
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Abstract

Background: Caregivers are invaluable sources of support for individuals recovering from head and neck cancer (HNC). Accordingly, minimizing caregiver distress is essential to promote the well-being of both caregivers and their patients. This study assessed if psychosocial distress (i.e., anxiety and depression) among HNC caregivers is associated with a difference in how caregivers and their patients perceive patients’ quality of life (QOL) after treatment completion. Methods: Caregivers’ and patients’ perceptions of patient QOL were assessed using the University of Washington QOL Questionaire (UWQOL), a validated HNC-specific health-related QOL questionnaire. The survey is interpreted in terms of its two composite scores: a physical QOL score and a social-emotional QOL score with higher scores indicating better QOL. Caregiver anxiety was assessed using the Generalized Anxiety Questionaire-7 (GAD-7) and caregiver depression was assessed using the Patient Health Questionaire 8 (PHQ-8). Patients completed the UWQOL as part of clinic intake while caregivers were asked to complete the UWQOL for their patients in addition to the PHQ-8 and GAD-7 in private. Linear regression was used to analyze the association between differences in caregivers’ and patients’ QOL scores (both social-emotional and physical QOL subscale scores) and GAD-7 and PHQ-8 scores. Results: Of 47 caregivers recruited, 42.6% ( n = 20) viewed patients’ social-emotional QOL more negatively than patients themselves, while 31.9% viewed patients’ physical QOL more negatively. After controlling for covariates, differences in perception of social-emotional QOL ( p = .01) and differences in perception of physical QOL ( p = .007) were significantly associated with caregiver depression, but not anxiety. Caregivers who disagreed with patients regarding patients’ social-emotional QOL scored 6.80 points higher on the PHQ8 than agreeing caregivers. Caregivers who disagreed regarding patients’ physical QOL scored 6.09 points higher. Conclusion: Caregivers commonly view patients’ QOL more negatively than patients themselves. These caregivers tend to have greater psychosocial distress than caregivers who agree with their patients. Interventions designed to identify and aid at-risk caregivers are critically needed. We propose screening for differences in perception of patient QOL as a way of identifying distressed caregivers as well as provider-facilitated communication between patients and caregivers as possible interventions that should be examined in future research.

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  • 10 studies emphasized the need of enhancing social support by reinforcing support networks and facilitating access to support groups and associations.

    “Among the strategies described, 10 studies [28,29,31,32,36,39,41,50,54,57] emphasized the need of enhancing social support by means of reinforcing the support networks and facilitating access to support groups and associations.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [36]

    The Background discusses caregivers’ emotional support and losses to their social lives, while the Discussion and Conclusions propose caregiver screening, therapy referrals, and patient–caregiver communication. I found no passage recommending reinforcement of support networks or access to support groups or associations (searched those terms and social-support interventions). (LLM, conf=0.75)

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Cited by

Sorted by citations

  • Quality of Life in Caregivers of Cancer Patients: A Literature Review

    Guerra-Martín, M. D., Casado-Espinosa, M. D. R., Gavira-López, Y., Holgado-Castro, C., López-Latorre, I., & Borrallo-Riego, Á. (2023) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph20021570 · Cited by 80 · see citing works

    “Author/s and Year Objective Country/Period Type of Study/Instrument/Sample Main Findings Kilic y Oz, 2019 [24] Assess quality of life of family caregivers of patients with cancer in Türkiye.”
    BackgroundInfluential

Authors
Kassir, Z. M., Li, J., Harrison, C., Johnson, J. T., & Nilsen, M. L.
Affiliations
University of Pittsburgh (US)
Corresponding author
Nilsen, Marci L.
ORCID
Venue
BMC Cancer
Publisher
Springer Science and Business Media LLC
Published
2021-10-20
Volume
21
Issue
1
Pages
1127-1127
ISSN
1471-2407 (ISSN-L)
DOI
10.1186/s12885-021-08865-7
PMC
PMC8527693
OpenAlex
W3158528057
Cited by
21
References
4
Citations by year
2026: 7 · 2025: 2 · 2024: 5 · 2023: 7
FWCI
1.09
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Cancer (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, other-oa)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
University of Pittsburgh
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Otorhinolaryngology › Head and Neck Cancer Studies
Keywords
head and neck cancer, caregiver distress, quality of life, caregiver depression, caregiver anxiety, psychosocial distress, physical quality of life, caregiver screening, caregiver-patient communication
MeSH terms
Psychological Distress, Caregiver Burden, Aged, Anxiety, Cross-Sectional Studies, Depression, Female, Head and Neck Neoplasms, Humans, Male, Middle Aged, Perception, Quality of Life, Surveys and Questionnaires, Linear Models, Caregivers

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