How are we measuring health-related quality of life in patients with a Barrett Esophagus? A systematic review on patient-reported outcome measurements

Loon, Mirjam C. M. van der Ende-van; Stoker, A.; Nieuwkerk, Pythia T.; Curvers, Wouter L.; Schoon, Erik J.

doi:10.1007/s11136-021-03009-7

Cited by 5 publications

(7 citation statements)

References 48 publications

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“…fear of cancer, anxiety, trust in physicians, sense of control, gastrointestinal (GI) symptoms) were perceived as influencing HRQoL according to BE patients. None of the previously performed quantitative studies measuring HRQoL in BE patients sufficiently reflected these perceptions of HRQoL 11 . Quantitative data confirm associations between decreased HRQoL and fear of cancer, anxiety, and GI symptoms 7,10,12 .…”

Section: Introductionmentioning

confidence: 86%

“…None of the previously performed quantitative studies measuring HRQoL in BE patients sufficiently reflected these perceptions of HRQoL. 11 Quantitative data confirm associations between decreased HRQoL and fear of cancer, anxiety, and GI symptoms 7,10,12 . A more recent study on the prevalence of factors influencing HRQoL in patients receiving surveillance of their BE showed GERD symptom severity was associated with EAC cancer worry, anxiety and depression.…”

Section: Introductionmentioning

confidence: 87%

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Barrett Esophagus: Quality of life and factors associated with illness perception

et al. 2022

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Background Health‐related Quality of life (HRQoL) in patients with Barrett's esophagus (BE), a premalignant condition, may be influenced by gastroesophageal reflux disease (GERD) symptoms and the risk of developing esophageal adenocarcinoma. Methods We aim to investigate HRQoL in non‐dysplastic Barrett Esophagus (NDBE) patients, identify factors associated with a negative illness perception of the diagnosis BE and compare outcomes between patients treated in a specialized BE center with non‐expert centers. In this multi‐center cross‐sectional study, HRQoL of NDBE patients were assessed using the Short Form 36, Hospital Anxiety and Depression Scale, Cancer worry Scale, and Reflux Disease Questionnaire. A multivariable, linear regression analysis was conducted to assess factors associated with illness perception (Illness perception scale) of the BE diagnosis. Outcome parameters of patients from expert centers were compared to non‐expert centers. Results A total of 859 NDBE patients (mean age 63.6% and 74.5% male), of which 640 from BE expert centers were included. BE patients scored similar or higher means (i.e. better) on generic HRQoL in comparison with a Dutch norm population. The multivariable regression model showed that cancer worry, GERD symptoms, signs of anxiety and depression, and female gender were associated with a negative illness perception of BE. GERD symptoms were reported in the minority (22.4%) of BE patients. Levels of anxiety symptoms were comparable to a Dutch norm population (mean 3.7 vs. 3.9 p 0.183) and lower for depression symptoms (mean 6.8 vs. 7.6 p < 0.001). Overall, there were no differences found on outcomes between expert centers and non‐expert centers. Conclusion NDBE patients scored similar or better on generic HRQoL, anxiety and depression than an age and gender matched norm population. The presence of cancer worry, gastrointestinal symptoms, anxiety and depression, and female gender are factors associated with a negative illness perception of the diagnosis BE.

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Section: Introductionmentioning

confidence: 86%

Section: Introductionmentioning

confidence: 87%

Barrett Esophagus: Quality of life and factors associated with illness perception

et al. 2022

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“…In a systematic review, Van der Ende-van Loon et al assimilated the key areas of importance in HRQOL in BO according to patients from four qualitative works. 29 They outlined that individually the tools used in prior QOL work in BO did not address a full range of these issues, which could be true of the tools used in this study. To overcome this, we used multiple tools to address different aspects of HRQOL; however, this may have resulted in a burden to patients given the length of the questionnaire pack, though missing data proportions were low.…”

Section: Discussionmentioning

confidence: 99%

Quality of life measures in dysplastic Barrett’s oesophagus are comparable to patients with non-dysplastic Barrett’s oesophagus and do not improve after endoscopic therapy

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Britton²,

Heal

et al. 2023

BMJ Open Gastroenterol

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ObjectiveBarrett’s oesophagus (BO) is a precursor lesion, via dysplastic phases, to oesophageal adenocarcinoma. Although overall risk from BO is low, it has been shown to adversely affect health-related quality of life (HRQOL). The aim was to compare dysplastic BO patients’ HRQOL pre-endoscopic therapy (pre-ET) and post-ET. The pre-ET BO group was also compared with other cohorts: non-dysplastic BO (NDBO), those with colonic polyps, gastro-oesophageal reflux disease (GORD) and healthy volunteers.DesignParticipants in the pre-ET cohort were recruited prior to their endotherapy and HRQOL questionnaires provided pre-ET and post-ET. Wilcoxon rank test was used to compare the pre-ET and post-ET findings. The Pre-ET group was compared to the other cohorts’ HRQOL results using multiple linear regression analysis.ResultsPre-ET group of 69 participants returned the questionnaires prior to and 42 post-ET. Both the pre-ET and post-ET group showed similar levels of cancer worry, despite the treatment. No statistical significance was found for symptoms scores, anxiety and depression or general health measures with the Short Form-36 (SF-36) Score. Education for the BO patients was overall lacking with many of the pre-ET group still reporting unanswered questions about their disease.The Pre-ET group was compared with NDBO group (N=379), GORD (N=132), colonic polyp patients (N=152) and healthy volunteers (N=48). Cancer worry was similar between the NDBO group and the Pre-ET group, despite their lower risk of progression. GORD patients had worse symptom scores from a reflux and heartburn perspective. Only the healthy group has significantly better scores in the SF-36 and improved hospital anxiety and depression scores.ConclusionThese findings suggest that there is a need to improve HRQOL for patients with BO. This should include improved education and devising-specific patient-reported outcome measures for BO to capture relevant areas of HRQOL in future studies.

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“…Both these aspects are theoretically determinants of possible situations of regrets regarding a therapeutic choice 18. However, generic PROMs are used to provide comparisons between diseases or to compare data with normative population values, not to evaluate specific patient populations 19. Therefore, selecting PROMs is a complex but essential process, and it is also important to look for input from the target patient population early when developing valid and reliable measurements for PROMs in a population-specific framework 19 20…”

Section: Methods and Analysismentioning

confidence: 99%

Mapping the literature on decision regret in patients with non-communicable diseases (NCDs): a scoping review protocol

et al. 2023

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IntroductionDecision regret refers to feelings of remorse or dissatisfaction with a decision made regarding the treatment. Mapping the meaningful aspects of decision regret in patients with non-communicable diseases (NCDs) is necessary to provide a comprehensive understanding of the phenomenon and inform the development of effective interventions to address it. For this reason, this protocol aimed to describe the methodological aspects of a scoping review focused on mapping all the meaningful aspects of decision regret in patients with NCDs and provide a conceptual and comprehensive framework of the phenomenon.Methods and analysisThe study described in this protocol will be performed following the Joanna Briggs Institute (JBI) methodology for scoping reviews. The anticipated starting time is July/August 2023 and the anticipated end of the review is June 2024. This scoping review will include quantitative, qualitative, primary and secondary literature, as well as grey literature on decision regret in patients with NCDs. The systematic search will be performed by consulting PubMed, Embase, Scopus, CINAHL, the Cochrane Library and Google Scholar. English-language articles from any context will be eligible for inclusion. Two independent reviewers will take part in an iterative process of evaluating literature, choosing papers and extracting data. Disagreements among reviewers will be solved through consensus meetings. Results will be presented in relation to the review question by employing tables, figures and narrative summaries.Ethics and disseminationThis scoping review did not require ethical approval since it involves a literature review and does not include new data collection from human participants. The results of the review will provide a summary of the available literature on decision regret experienced by patients with NCDs, which is crucial for developing preventive educational interventions in situations where multiple therapeutic options are available.

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How are we measuring health-related quality of life in patients with a Barrett Esophagus? A systematic review on patient-reported outcome measurements

Cited by 5 publications

References 48 publications

Barrett Esophagus: Quality of life and factors associated with illness perception

Barrett Esophagus: Quality of life and factors associated with illness perception

Quality of life measures in dysplastic Barrett’s oesophagus are comparable to patients with non-dysplastic Barrett’s oesophagus and do not improve after endoscopic therapy

Mapping the literature on decision regret in patients with non-communicable diseases (NCDs): a scoping review protocol

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