Pathways to Diagnosis for Teenagers and Young Adults with Cancer in European Nations: A Pilot Study

Smith, Graham; Pini, Simon; Ferrari, Andrea; Yeomanson, Daniel; Hough, Rachael; Olsen, Pia Riis; Gofti-Laroche, Leila; Fleming, Thomas J.; Elliott, Martin; Feltbower, Richard; Kertész, Gabriella; Stark, Dan

doi:10.1089/jayao.2018.0045

Cited by 4 publications

(6 citation statements)

References 41 publications

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“…Recently published data from the BRIGHTLIGHT cohort, a study of TYA patients recruited across England, correlated patient-derived recall of symptom onset and healthcare consultation with date of diagnosis from cancer registry records [25] and highlighted that sociodemographic factors and tumour type significantly influenced pre-referral primary care consultation rates and TTD. The relationship between TTD and cancer type in TYA has also been reported by others [13, 26]. Other studies suggest low utilisation of the 2 Week Wait (TWW) referral pathway in TYA, and an excess of emergency referral [27] but, in contrast to adult data [28], there is currently no evidence that emergency referral for TYA adversely affects survival.…”

Section: Introductionmentioning

confidence: 60%

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

et al. 2019

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Background Time to diagnosis (TTD) concerns teenagers and young adults (TYA) with cancer and may affect outcome. Methods Healthcare records from 105 TYA in a regional cancer service were assessed to document events from 1st symptom to treatment start. Detailed pathway construction was possible for 104 patients and allowed a multidisciplinary panel review of each pathway with assessment of good practice and lessons for the future. Results 1st presentation was to primary care in 86, and 93% consulted in primary care before diagnosis. Routes to Diagnosis were 45% via urgent 2 Week Wait pathways and 38% as emergency referrals. Total Interval (time from 1st presentation to treatment start) was median 63 (range 1–559) days, varying within/between diagnoses. Patient interval (time from 1st symptom to 1st presentation) was longest for lymphoma, carcinoma and bone tumour (medians: 9, 12, 20 days). Overall, time in primary care was short (median 3, range 0–537 days) compared to secondary care (median 29, range 0–195 days) and longest for lymphoma, carcinoma, brain/CNS (medians: 10, 15, 16 days). Specialist Care interval (time from 1st specialist visit to treatment start) was longest for bone, brain/CNS, lymphoma, carcinoma (medians: 30, 33, 36, 48 days). 40% pathways were rated as showing good/best practice but 16% were less than satisfactory. Continued safety-netting/support was identified from primary care but analysis suggested opportunities for improvement in transition through secondary care. Conclusions Previous reports of prolonged TTD have focused on delay in referral from primary care but this study suggests that this might be reduced by optimising management in secondary care.

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Section: Introductionmentioning

confidence: 60%

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

et al. 2019

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“…This is in line with previously observed disparities between self-reported and EHR-based symptom frequencies among adult populations. [28][29][30] Regarding associations between symptoms and diagnostic timeliness, a previous study 26 that examined 3 categories of symptoms (pain, growing swelling or mass, or "specific symptoms") among primarily older children and adolescents (ie, aged Ն10 years) with solid tumors found no statistically significant evidence for variation in time to help-seeking. In our study, the sample size precluded the use of multivariable regression to examine differences in patient interval between individual symptoms while adjusting for potential confounders.…”

Section: Discussionmentioning

confidence: 99%

“…This is in line with previously observed disparities between self-reported and EHR-based symptom frequencies among adult populations. 28 , 29 , 30 …”

Section: Discussionmentioning

confidence: 99%

Association of Self-reported Presenting Symptoms With Timeliness of Help-Seeking Among Adolescents and Young Adults With Cancer in the BRIGHTLIGHT Study

et al. 2020

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Key Points Question What are the common presenting symptoms of cancer in adolescents and young adults aged 12 to 24 years and how are they associated with help-seeking? Findings This cross-sectional analysis of 803 adolescents and young adult patients found a range of presenting symptoms in diverse combinations, which varied by cancer group; 27% of patients waited more than 1 month to seek help for their symptoms. Meaning These findings suggest that adolescents and young adults with cancer present with a broad spectrum of symptoms, often at substantially higher proportions than previously reported; thus, re-examination of symptom prevalence in this patient group is warranted.

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“…A Danish study amongst AYAs (aged 15-39) reported GP consultations increased several months before cancer diagnosis, possibly reflecting low awareness of patients and HCPs that symptoms may be due to malignancy [29].…”

Section: Discussionmentioning

confidence: 99%

The Prolonged Diagnostic Pathway of Young Adults (Aged 25–39) with Cancer in the United Kingdom: Results from the Young Adult Cancer Patient Journey Study

Soomers

Lidington

Sirohi

et al. 2021

JCM

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Purpose: Teenagers and young adults (TYAs; aged 13–24) experience prolonged intervals to cancer diagnosis. Insight into diagnostic intervals in young adults (YAs; aged 25–39) and subgroups at risk for long intervals is lacking. We investigated the diagnostic pathway of YA cancer patients, examined patient and tumor characteristics associated with its length, and compared the patient interval length of our sample with a TYA cohort. Methods: In this cross-sectional survey YAs diagnosed with cancer in the UK in the past five years completed a questionnaire describing their patient (time from first symptom to first doctor consultation) and healthcare interval (from first consultation until consultation with a cancer specialist), sociodemographic, and clinical characteristics. Associations between characteristics and interval length were examined and compared with previously published data in TYAs. Results: Among 341 YAs the patient interval lasted ≥2 weeks, ≥1 month, and ≥3 months in 60%, 42%, and 21%, respectively, compared to 48%, 27%, and 12% in the TYA group. The healthcare interval lasted ≥2 weeks, ≥1 month, and ≥3 months in 62%, 40%, and 17% of YA patients, respectively. YAs with melanoma or cervical cancer were most likely to experience long intervals, whereas YAs with breast cancer and leukemia were most likely to experience short intervals. Conclusions: Most YAs were not seen by a cancer specialist within 2 weeks of GP consultation. Interval lengths in YAs were associated with cancer diagnosis. Patient intervals were longer among YAs than among TYAs. Our study highlights long diagnostic pathways among YAs and calls for more awareness among healthcare professionals about malignancies in this age group.

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Pathways to Diagnosis for Teenagers and Young Adults with Cancer in European Nations: A Pilot Study

Abstract: Focused research upon the mechanisms underpinning complex cancer pathways, and focusing that research upon specific cancer types within TYA may be the next key areas of study.

Cited by 4 publications

References 41 publications

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

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

Association of Self-reported Presenting Symptoms With Timeliness of Help-Seeking Among Adolescents and Young Adults With Cancer in the BRIGHTLIGHT Study

The Prolonged Diagnostic Pathway of Young Adults (Aged 25–39) with Cancer in the United Kingdom: Results from the Young Adult Cancer Patient Journey Study

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