Abstract:Background:
Early diagnosis is an important aspect of quality of cancer care.Analysis of the diagnostic delays and the reasons for delay helps to plan strategies to improve cancer care.
Objectives:
To determine the primary, secondary, and total diagnostic delay of patients diagnosed with head and neck cancer and to explore the reasons for the delay from the patient perspective.
Methods:
Explanatory mixed method design was used. Two hundred pe… Show more
“…2 ). Negligence (Ganesan et al 2020 ) and normalisation of initial symptoms due to ignorance (Sathwara et al 2017 ; Panda et al 2020 ) were barriers for the early detection of cancer, especially for the female patients, in the present study as well. Fig.…”
Section: Discussionsupporting
confidence: 46%
“…Similar reasons for delay in help seeking and diagnosis were reported from India as well. Studies showed that factors including lack of infrastructure facilities; financial constraints; gender related stigma; trivialisation of symptoms and lower awareness of the symptoms delayed cancer diagnosis in India (Broom and Doron 2012 ; Pati et al 2013 ; Krishnatreya et al 2015 ; Ganesan et al 2020 ). These are further intersected with socio-economic background, education, gender, place of residence and age of the patients and the type of cancer.…”
There is evidence that cancer mortality and morbidity could be reduced when the disease is diagnosed and treated at an early stage. The paper examines the pathways of delay of cancer diagnosis in an Indian setting. It draws on a qualitative study conducted among cancer survivors and family members of cancer patients in the city of Bengaluru, South India. The results show that a substantial part of the delay occurred at the stage of initial formal help seeking wherein patient and family-led, disease-related and systemic factors together played a major role. Patient-led factors included trivialisation and normalisation of symptoms as part of general fatigue and aging; unrealistic risk perceptions that linked causality of cancer merely to heredity and behavioural risk factors; fear of being diagnosed as cancer patient; gender related reasons including family’s gender performance expectation, lower agency of women to seek help and lower prioratisation of women’s health in the household and access related issues including financial constraints and unavailability of specialised hospitals nearby. Disease-related factors included the presence of comorbidity, cancer’s mimicking of symptoms of other diseases and absence of distinguishable symptoms at the initial stage for certain types of cancers. The practitioner-led and system-led factors such as trivialisation of symptoms by general practitioners, non cancer-specific referrals, and lack of cancer screening facilities accounted for a major part of delay after the formal help seeking. The paper argues that the mere knowledge of cancer symptoms did not always lead to early diagnosis due to the interplay of these factors. The ongoing cancer prevention and control interventions in India need to be informed of these micro level factors while developing strategies to prevent avoidable delays in cancer diagnosis.
“…2 ). Negligence (Ganesan et al 2020 ) and normalisation of initial symptoms due to ignorance (Sathwara et al 2017 ; Panda et al 2020 ) were barriers for the early detection of cancer, especially for the female patients, in the present study as well. Fig.…”
Section: Discussionsupporting
confidence: 46%
“…Similar reasons for delay in help seeking and diagnosis were reported from India as well. Studies showed that factors including lack of infrastructure facilities; financial constraints; gender related stigma; trivialisation of symptoms and lower awareness of the symptoms delayed cancer diagnosis in India (Broom and Doron 2012 ; Pati et al 2013 ; Krishnatreya et al 2015 ; Ganesan et al 2020 ). These are further intersected with socio-economic background, education, gender, place of residence and age of the patients and the type of cancer.…”
There is evidence that cancer mortality and morbidity could be reduced when the disease is diagnosed and treated at an early stage. The paper examines the pathways of delay of cancer diagnosis in an Indian setting. It draws on a qualitative study conducted among cancer survivors and family members of cancer patients in the city of Bengaluru, South India. The results show that a substantial part of the delay occurred at the stage of initial formal help seeking wherein patient and family-led, disease-related and systemic factors together played a major role. Patient-led factors included trivialisation and normalisation of symptoms as part of general fatigue and aging; unrealistic risk perceptions that linked causality of cancer merely to heredity and behavioural risk factors; fear of being diagnosed as cancer patient; gender related reasons including family’s gender performance expectation, lower agency of women to seek help and lower prioratisation of women’s health in the household and access related issues including financial constraints and unavailability of specialised hospitals nearby. Disease-related factors included the presence of comorbidity, cancer’s mimicking of symptoms of other diseases and absence of distinguishable symptoms at the initial stage for certain types of cancers. The practitioner-led and system-led factors such as trivialisation of symptoms by general practitioners, non cancer-specific referrals, and lack of cancer screening facilities accounted for a major part of delay after the formal help seeking. The paper argues that the mere knowledge of cancer symptoms did not always lead to early diagnosis due to the interplay of these factors. The ongoing cancer prevention and control interventions in India need to be informed of these micro level factors while developing strategies to prevent avoidable delays in cancer diagnosis.
“…Questions and response options in Supplement A were derived from the 2010 National Health Interview Survey section on adult access to health care and utilization 9 and the Carolina Head and Neck Cancer Epidemiology Study 10 . In addition to the literature that informed the creation of these 2 surveys, there is evidence supporting the specific patient‐reported barriers queried in our study across a variety of cancer types 11–16 …”
Section: Methodsmentioning
confidence: 98%
“…10 In addition to the literature that informed the creation of these 2 surveys, there is evidence supporting the specific patient-reported barriers queried in our study across a variety of cancer types. 11-16…”
Section: Methodsmentioning
confidence: 99%
“…10 In addition to the literature that informed the creation of these 2 surveys, there is evidence supporting the specific patientreported barriers queried in our study across a variety of cancer types. [11][12][13][14][15][16] Clinical data were extracted from patient medical records, including tumor site, American Joint Committee on Cancer stage (seventh edition), and p16 tumor status. HRQOL outcomes were measured with the PROMIS questionnaire (Patient-Reported Outcomes Measurement Information System) 17 and the FACT-GP questionnaire (Functional Assessment of Cancer Therapy-General Population), 18 which is divided into physical, social, emotional, and functional domains.…”
Section: Questionnaires and Data Extractionmentioning
Objective To examine the prevalence and predictors of patient-reported barriers to care among survivors of head and neck squamous cell carcinoma and the association with health-related quality of life (HRQOL) outcomes. Study Design Retrospective cohort study. Setting Outpatient oncology clinic at an academic tertiary care center. Methods Data were obtained from the UNC Health Registry/Cancer Survivorship Cohort. Barriers to care included self-reported delays in care and inability to obtain needed care due to cost. HRQOL was measured with validated questionnaires: general (PROMIS) and cancer specific (FACT-GP). Results The sample included 202 patients with head and neck squamous cell carcinoma with a mean age of 59.6 years (SD, 10.0). Eighty-two percent were male and 87% were White. Sixty-two patients (31%) reported at least 1 barrier to care. Significant predictors of a barrier to care in unadjusted analysis included age ≤60 years ( P = .007), female sex ( P = .020), being unmarried ( P = .016), being uninsured ( P = .047), and Medicaid insurance ( P = .022). Patients reporting barriers to care had significantly worse physical and mental HRQOL on the PROMIS questionnaires ( P < .001 and P = .002, respectively) and lower cancer-specific HRQOL on the FACT-GP questionnaire ( P < .001), which persisted across physical, social, emotional, and functional domains. There was no difference in 5-year OS (75.3% vs 84.1%, P = .177) or 5-year CSS (81.6% vs 85.4%, P = .542) in patients with and without barriers to care. Conclusion Delay- and affordability-related barriers are common among survivors of head and neck cancer and appear to be associated with significantly worse HRQOL outcomes. Certain sociodemographic groups appear to be more at risk of patient-reported barriers to care.
BackgroundUnderstanding health care experience in head and neck cancer (HNC) is becoming increasingly important due to changes in the disease profile, survivorship, and a greater appreciation of patient health care experience as an important outcome measure. People with HNC encounter many different types of health care professionals and health care touchpoints.MethodThrough systematic database searching, this scoping review of qualitative English‐language studies describes the self‐reported care experiences of those with HNC across the health care continuum, and describes the current state of the literature.ResultsOverall, the 95 studies identified were heterogeneous and investigated a broad range of topics. Trends across studies showed research centered on hospital‐based care, conducted in developed countries, with more studies on feeding than other aspects of care. Generic qualitative research frameworks, with individual interviews, were the preferred method of data collection.ConclusionDespite identifying many studies, there are significant gaps in our understanding of the HNC patient experience.
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