Achieving a timely diagnosis for teenagers and young adults with cancer: the ACE “too young to get cancer?” study

Dommett, Rachel; Pring, Hannah; Cargill, Jamie; Beynon, Paul; Cameron, Alison; Cox, Rachel; Nechowska, Aoife; Wint, Alison; Stevens, Michaël C.G.

doi:10.1186/s12885-019-5776-0

Cited by 11 publications

(20 citation statements)

References 27 publications

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“…Women and adolescents were more likely to report ‘fear’ as a barrier than men and adults, which has also been found by other studies [ 27 , 53 ]. Adolescents were also found in other studies to express ‘fear’ as an important barrier [ 54 – 56 ]. A school-based intervention program, aimed at increasing knowledge on cancer signs and symptoms was able to reduce such barriers, at least in the short-term [ 48 ].…”

Section: Discussionsupporting

confidence: 57%

Perceived barriers to seeking cancer care in the Gaza Strip: a cross-sectional study

Elshami

Böttcher

Alkhatib

et al. 2021

BMC Health Serv Res

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Background Several factors might contribute to the delay to get cancer care including poor cancer awareness and having barriers to seeking help. This study described these barriers in Gaza and their association with recalling and recognizing cancer symptoms and risk factors. Methods A cross-sectional study was conducted in Gaza. Adult visitors (≥18 years) to the largest three governmental hospitals and adolescent students (15–17 years) from ten high schools were recruited. A translated-into-Arabic version of the validated Cancer Awareness Measure (CAM) was used to collect data in face-to-face interviews. It described demographic data, barriers to seek cancer care as well as recall and recognition of cancer symptoms and risk factors. Responses were compared between adults and adolescents as well as males and females. Results Of 3033 participants approached, 2886 completed the CAM (response rate= 95.2%). Among them, 1429 (49.5%) were adult (702 females; 49.1%) and 1457 (50.5%) were adolescent (781 females; 53.6%). The mean age± standard deviation (SD) of adult and adolescent participants was 33.7±11.7 years and 16.3±0.8 years, respectively. Emotional barriers were the most common barriers with ‘feeling scared’ as the most reported barrier (n=1512, 52.4%). Females and adolescents were more likely to report ‘feeling scared’ as a barrier than males and adults, respectively. Higher recall scores for cancer symptoms were associated with lower likelihood to report ‘embarrassment’, ‘worry about wasting doctor’s time’ and ‘difficulty arranging transport’. This was also seen for recalling risk factors, where ‘embarrassment’ and all practical barriers showed significant inverse associations with higher scores. In addition, greater recognition scores of cancer risk factors were inversely associated with reporting ‘embarrassment’ and ‘feeling scared’. Conclusions The most commonly perceived barriers to seeking cancer care were ‘feeling scared’ and ‘feeling worried about what the doctor might find’, followed by practical and service barriers. Females and adolescents were more likely to report ‘fear’ as a barrier to seek medical advice. Having a higher recall of cancer symptoms and risk factors was inversely associated with reporting most barriers. To improve patient outcome, early presentation can be facilitated by targeting barriers specific to population groups.

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Section: Discussionsupporting

confidence: 57%

Perceived barriers to seeking cancer care in the Gaza Strip: a cross-sectional study

Elshami

Böttcher

Alkhatib

et al. 2021

BMC Health Serv Res

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“…First, TYAs more commonly seek initial medical advice from primary care prior to a cancer diagnosis 27 and have referral pathways more similar to adult cancer services, such as the 2-week wait referral system. 28 This is in contrast to children with suspected cancer, who are more frequently referred immediately to the emergency department. 29 We also found that the fall in incident diagnoses was specific to certain tumour types, including CNS tumours and lymphomas.…”

Section: Discussionmentioning

confidence: 99%

Childhood, teenage and young adult cancer diagnosis during the first wave of the COVID-19 pandemic: a population-based observational cohort study in England

2022

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ObjectiveTo investigate childhood, teenage and young adult cancer diagnostic pathways during the first wave of the COVID-19 pandemic in England.DesignPopulation-based cohort study.Setting and participantsQResearch, a nationally representative primary care database, linked to hospital admission, mortality and cancer registry data, was used to identify childhood, teenage and young adult cancers (0–24 years) diagnosed between 1 January 2017 and 15 August 2020.Main outcomesMain outcomes of interest were: (1) number of incident cancer diagnoses per month, (2) diagnostic, treatment time intervals and (3) cancer-related intensive care admissions.Results2607 childhood, teenage and young adult cancers were diagnosed from 1 January 2017 to 15 August 2020; 380 were diagnosed during the pandemic period. Overall, 17% (95% CI −28.0% to −4.0%) reduction in the incidence rate ratio of cancers was observed during the pandemic. Specific decreases were seen for central nervous system tumour (−38% (95% CI −52% to −21%)) and lymphoma (−28% (95% CI −45% to −5%)) diagnoses. Additionally, childhood cancers diagnosed during the pandemic were significantly more likely to have intensive care admissions (adjusted OR 2.2 (95% CI 1.33 to 3.47)). Median time-to-diagnosis did not significantly differ across periods (+4.5 days (95% CI −20.5 to +29.5)), while median time-to-treatment was shorter during the pandemic (−0.7 days (95% CI −1.1 to −0.3)).ConclusionsCollectively, our findings of a significant reduction in cancer diagnoses and increase in intensive care admissions provide initial insight into the changes that occurred to childhood, teenage and young adult cancer diagnostic pathways during the first wave of the pandemic.

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“…Like the prolonged periods to diagnosis described in this study, previous research has found that TYAs similarly deal with extended times to diagnosis potentially contributing to unnecessary emergency presentations [36]. Evidence from this study and the paper by Dommett et al [36] suggests that referrals from primary care for suspected cancers in young people should be encouraged and organisational delays, such as errors in referrals, must be reduced for timely investigations.…”

Section: Discussionmentioning

confidence: 51%

Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service

et al. 2021

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Aims: Adolescents and young adults aged 15e39 years with cancer face unique medical, practical and psychosocial issues. In the UK, principal treatment centres and programmes have been designed to care for teenage and young adult patients aged 13e24 years in an age-appropriate manner. However, for young adults (YAs) aged 25e39 years with cancer, little access to age-specific support is available. The aim of this study was to examine this possible gap by qualitatively exploring YA care experiences, involving patients as research partners in the analysis to ensure robust results. Materials and methods: We conducted a phenomenological qualitative study with YAs diagnosed with any cancer type between ages 25 and 39 years old in the last 5 years. Participants took part in interviews or focus groups and data were analysed using inductive thematic analysis. Results were shaped in an iterative process with the initial coders and four YA patients who did not participate in the study to improve the rigor of the results. Results: Sixty-five YAs with a range of tumour types participated. We identified seven themes and 13 subthemes. YAs found navigating the healthcare system difficult and commonly experienced prolonged diagnostic pathways. Participants felt under-informed about clinical details and the long-term implications of side-effects on daily life. YAs found online resources overwhelming but also a source of information and treatment support. Some patients regretted not discussing fertility before cancer treatment or felt uninformed or rushed when making fertility preservation decisions. A lack of age-tailored content or agespecific groups deterred YAs from accessing psychological support and rehabilitation services. Conclusions: YAs with cancer may miss some benefits provided to teenagers and young adults in age-tailored cancer services. Improving services for YAs in adult settings should focus on provision of age-specific information and access to existing relevant support.

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Achieving a timely diagnosis for teenagers and young adults with cancer: the ACE “too young to get cancer?” study

Cited by 11 publications

References 27 publications

Perceived barriers to seeking cancer care in the Gaza Strip: a cross-sectional study

Perceived barriers to seeking cancer care in the Gaza Strip: a cross-sectional study

Childhood, teenage and young adult cancer diagnosis during the first wave of the COVID-19 pandemic: a population-based observational cohort study in England

Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service

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