Understanding and Utilizing the Unmet Needs of Teenagers and Young Adults with Cancer to Determine Priorities for Service Development: The Macmillan On Target Programme

Stevens, Michaël C.G.; Beynon, Paul; Cameron, Alison; Cargill, Jamie; Cheshire, Jennifer; Dolby, Sue

doi:10.1089/jayao.2018.0044

Cited by 15 publications

(22 citation statements)

References 15 publications

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“…Existing referral policies were in line with those mandated by the specification for TYA cancer services set within NHS England. Time to diagnosis had been identified as a priority concern by patients involved in previous service development within the network [30].…”

Section: Methodsmentioning

confidence: 99%

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: Methodsmentioning

confidence: 99%

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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“…The results of this study will add to the growing body of work in the needs of AYA oncology patients and support the tailoring of AYA-specific care. It also emphasizes the importance of patient experiences and needs in the development of age-specific health care services [ 33 ].…”

Section: Discussionmentioning

confidence: 99%

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals

Kaal

Lidington

Prins

et al. 2021

JCM

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This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.

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“…Survivors often expressed that needs around cognitive issues were unmet 33,34,51,54,60,61 . Jones et al 33 found that only 41% of survivors with cognitive concerns sought help and 47% of those experienced difficulty finding help.…”

Section: Unmet Information and Support Needsmentioning

confidence: 99%

Cancer-related cognitive impairment in survivors of adolescent and young adult cancer: A scoping review

Vizer

Mikles²,

Piepmeier³

2021

Preprint

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Objectives: Cancer-related cognitive impairments (CRCI) are common after treatment and could have importantrepercussions for adolescent and young adult (AYA) survivors diagnosed between ages 15 and 39. However, mostresearch focuses on younger or older survivors so we know relatively little about CRCI among AYA cancer survivors.Here we review the research on CRCI among survivors of AYA cancer to determine prevalence, associated factors,and ongoing impact.Methods: In December 2020 we performed a systematic search in MEDLINE, Web of Science, PsycInfo, CINAHL,EMBASE, and Cochrane Central Register of Controlled Trials to identify peer-reviewed English language articlesdescribing original research with survivors of AYA cancer having at least one outcome concerning cognition. We screened 4090 articles and 35 met eligibility criteria. Guided by the PRISMA-ScR Checklist, we extractedinformation, assessed study quality, organized articles by study design, identified factors associated with CRCI, andidentified ongoing impacts of CRCI.Results: Most studies were cross-sectional surveys and interviews with some longitudinal and neurocognitiveassessment studies, one brain imaging study, and one intervention study. Weighted mean prevalence of CRCI was38.4%. Factors associated with CRCI included older age, female gender, higher dose chemotherapy, andcomorbidities. Ongoing impacts of CRCI included impaired role functioning, financial toxicity, and unmet needs.However, the intervention study had encouraging results for improving cognition and functioning.Conclusions: This review of literature on CRCI in survivors of AYA cancer shows a need for longitudinal, imaging,and intervention studies. Digital health technology is recommended for research and intervention implementation.

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Understanding and Utilizing the Unmet Needs of Teenagers and Young Adults with Cancer to Determine Priorities for Service Development: The Macmillan On Target Programme

Cited by 15 publications

References 15 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

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals

Cancer-related cognitive impairment in survivors of adolescent and young adult cancer: A scoping review

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