Abstract
Quality of life (QOL) has become an essential measure of a patient’s welfare. In this chapter, we aim to identify the impact of different neurocutaneous syndromes on QOL. Based on these findings, we have made practical recommendations on how clinicians can assess and improve QOL, aided by clinical vignettes.
We undertook a comprehensive literature review searching for all the diseases outlined within this book on published works. We identified over 70,000 papers and further searched under the relevant syndrome/disease name and health-related quality of life or quality of life. Of 796 papers, we identified a smaller number including assessment of QOL. We found that the Neurocutaneous Syndromes (NCS) can negatively affect QOL in many ways including variability in impact of different disease manifestations/complications, ill health, pain and the psychosocial domain.
It is important to consider the QOL in all contact with patients and families affected by NCS. Structured assessment, repeated as needed, can be very informative. Appropriate surveillance for the specific syndrome, disease manifestations, complications and age can be challenging. However, with a structured/evidence-based approach, supported with liaison from appropriate experts, management can be optimised with significant implications for quality of life.
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Parker, A.P.J., Wilkinson, F.J., O’Callaghan, F.J., Amin, S. (2022). Improving Quality of Life in the Neurocutaneous Syndromes. In: Panteliadis, C.P., Benjamin, R., Hagel, C. (eds) Neurocutaneous Disorders. Springer, Cham. https://doi.org/10.1007/978-3-030-87893-1_52
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DOI: https://doi.org/10.1007/978-3-030-87893-1_52
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