A Systematic Review of Economic and Quality-of-Life Research in Carcinoid Syndrome

Pan, I‐Wen; Halperin, Daniel M.; Kim, Bumyang; Yao, James C.; Shih, Ya Chen Tina

doi:10.1007/s40273-021-01071-0

Cited by 3 publications

(2 citation statements)

References 39 publications

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“…However, the European clinical practice guidelines for NENs acknowledge that there is a lack of standardised follow‐up regimens, 70,87,88 leading to uncertainty in determining cost‐effectiveness. For example, the care for people with carcinoid syndrome (the abnormal production of peptides and/or hormones (e.g., serotonin) caused by NETs 118 ) is known to incur high costs, but studies exploring this are limited 119 …”

Section: Resultsmentioning

confidence: 99%

“…For example, the care for people with carcinoid syndrome (the abnormal production of peptides and/or hormones (e.g., serotonin) caused by NETs 118 ) is known to incur high costs, but studies exploring this are limited. 119 While clinical guidelines do exist, their effectiveness is a function of the latest available information, and where data on the most appropriate care are lacking, guidance may prove inappropriate. As previously mentioned, cost-effective and highly sensitive biomarker testing for NENs is yet to be realised.…”

Section: Follow-up Care and Ongoing Treatmentmentioning

confidence: 99%

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Neuroendocrine neoplasms: Consensus on a patient care pathway

Hooper,

Jervis,

Morgan

et al. 2024

J Neuroendocrinology

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People with neuroendocrine neoplasms (NENs) face a multitude of challenges, including delayed diagnosis, low awareness of the cancer among healthcare professionals and limited access to multidisciplinary care and expert centres. We have developed the first patient care pathway for people living with NENs in England to guide disease management and help overcome these barriers. The pathway was developed in two phases. First, a pragmatic review of the literature was conducted, which was used to develop a draft patient care pathway. Second, the draft pathway was then updated following semi‐structured interviews with carefully selected expert stakeholders. After each phase, the pathway was discussed among a multidisciplinary, expert advisory group (which comprised the authors and the Deputy Chief Operating Officer, West Suffolk NHS Foundation Trust), who reached a consensus on the ideal care pathway. This article presents the outputs of this research. The pathway identified key barriers to care and highlighted how these may be addressed, with many of the findings relevant to the rest of the UK and international audiences. NENs are increasing in incidence and prevalence in England, compounding pre‐existing inequities in diagnosis and disease management. Effective integration of this pathway within NHS England will help achieve optimal, equitable care provision for all people with NENs, and should be feasible within the existing expert multidisciplinary teams across the country.

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Section: Resultsmentioning

confidence: 99%

Section: Follow-up Care and Ongoing Treatmentmentioning

confidence: 99%