TY - JOUR
T1 - Health-related quality of life in neuroendocrine neoplasia
T2 - A critical review
AU - White, Benjamin Easton
AU - Druce, Maralyn R.
AU - Grozinsky-Glasberg, Simona
AU - Srirajaskanthan, Rajaventhan
AU - Gamper, Eva Maria
AU - Gray, Debra
AU - Mujica-Mota, Ruben
AU - Ramage, John K.
PY - 2020/7
Y1 - 2020/7
N2 - Incidence of neuroendocrine neoplasia (NEN) is increasing, as is use of health-related quality of life (HRQoL) measurement in clinical trials. Following development of validated questionnaires, HRQoL is widely used to assess outcomes. This review is intended for healthcare professionals and is based on a selection of data published in the last decade. HRQoL is on par with other clinical endpoints such as performance status. Assessments in clinical trials have been particularly useful for monitoring the symptom burden of NEN, for the effects of treatments on patients' lives, and have provided new data allied to the usual clinical endpoints. QoL expressed as quality-adjusted life years (QALYs) have become the most important primary outcome to establish cost-effectiveness in health economic evaluation. From looking at clinical trials over the last 10 years, we see that the quality of HRQoL evidence reported in published studies has improved and, in general, recent studies are likely to be more methodologically robust. Assessment of HRQoL in clinical trials is likely to become a standard part of clinical practice in NEN, as in other cancers. However, clear methods for calculating the clinical meaningfulness of changes in scores are needed. Other limitations of HRQoL measurement include lack of specificity to certain symptom sets and ease of completion and administration. An international group taking a lead on developing HRQoL research specifically in NEN patients is needed to address limitations of the evidence base. In order for greater weight to be placed on HRQoL data, agreement on optimal, validated scoring systems is needed.
AB - Incidence of neuroendocrine neoplasia (NEN) is increasing, as is use of health-related quality of life (HRQoL) measurement in clinical trials. Following development of validated questionnaires, HRQoL is widely used to assess outcomes. This review is intended for healthcare professionals and is based on a selection of data published in the last decade. HRQoL is on par with other clinical endpoints such as performance status. Assessments in clinical trials have been particularly useful for monitoring the symptom burden of NEN, for the effects of treatments on patients' lives, and have provided new data allied to the usual clinical endpoints. QoL expressed as quality-adjusted life years (QALYs) have become the most important primary outcome to establish cost-effectiveness in health economic evaluation. From looking at clinical trials over the last 10 years, we see that the quality of HRQoL evidence reported in published studies has improved and, in general, recent studies are likely to be more methodologically robust. Assessment of HRQoL in clinical trials is likely to become a standard part of clinical practice in NEN, as in other cancers. However, clear methods for calculating the clinical meaningfulness of changes in scores are needed. Other limitations of HRQoL measurement include lack of specificity to certain symptom sets and ease of completion and administration. An international group taking a lead on developing HRQoL research specifically in NEN patients is needed to address limitations of the evidence base. In order for greater weight to be placed on HRQoL data, agreement on optimal, validated scoring systems is needed.
KW - Health-related quality of life
KW - Neuroendocrine neoplasia
KW - Neuroendocrine tumorneuroendocrine tumour
KW - Patient-reported outcomes
UR - http://www.scopus.com/inward/record.url?scp=85086749203&partnerID=8YFLogxK
U2 - 10.1530/ERC-20-0066
DO - 10.1530/ERC-20-0066
M3 - Review article
C2 - 32449694
AN - SCOPUS:85086749203
SN - 1351-0088
VL - 27
SP - R267-R280
JO - Endocrine-Related Cancer
JF - Endocrine-Related Cancer
IS - 7
ER -
