Systematic review reveals lack of quality in reporting health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours.
BACKGROUND
Gastroenteropancreatic neuroendocrine tumours (GEP-NET) are often slow-growing and patients may live for years with metastasised disease. Hence, along with increasing overall and progression-free survival, treatments aim at preserving patients' well-being and health-related quality of life (HRQoL). However, studies on systematic HRQoL assessment in patients with GEP-NET are scarce. Therefore, the purpose of the current review is to systematically evaluate the methodological quality of the identified studies.


METHODS
A targeted database search was performed in PubMed, EMBASE, and CENTRAL. Data extraction was conducted by two independent researchers according to predefined criteria. For study evaluation, the Minimum Standard Checklist for Evaluating HRQoL Outcomes in Cancer Clinical Trials and the CONSORT Patient-Reported Outcome extension were adapted.


RESULTS
The database search yielded 48 eligible studies. We found the awareness for the need of HRQoL measurement to be growing and application of cancer-specific instruments gaining acceptance. Overall, studies were too heterogeneous in terms of patient characteristics and treatment interventions to draw clear conclusions for clinical practice. More importantly, a range of methodological shortcomings has been identified which were mainly related to the assessment and statistical analysis, as well as the reporting and interpretation of HRQoL data.


CONCLUSIONS
Despite an increasing interest in HRQoL in GEP-NET patients, there is still a lack of knowledge on this issue. A transfer of HRQoL results into clinical practice is hindered not only by the scarceness of studies, but also by the often limited quality of HRQoL processing and reporting.
Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
Caroline
C
Martini
Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria. eva.gamper@tirol-kliniken.at.|Department for Nuclear Medicine, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria. eva.gamper@tirol-kliniken.at.
Eva-Maria
EM
Gamper
Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
Lisa
L
Wintner
Department for Nuclear Medicine, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
Bernhard
B
Nilica
Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
Barbara
B
Sperner-Unterweger
Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
Bernhard
B
Holzner
Department for Nuclear Medicine, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
Irene
I
Virgolini
D018572:Disease-Free Survival; D006304:Health Status; D006801:Humans; D007414:Intestinal Neoplasms / Q000523:psychology*; D018358:Neuroendocrine Tumors / Q000523:psychology*; D017063:Outcome Assessment, Health Care; D010190:Pancreatic Neoplasms / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D019057:Quality-Adjusted Life Years; D013274:Stomach Neoplasms / Q000523:psychology*
Gastroenteropancreatic neuroendocrine tumours; Health-related quality of life; Methodological quality; Patient-reported outcomes; Systematic review