scholarly journals Development of a Short Instrument for Measuring Health-Related Quality of Life in Oncological Patients for Clinical Use: Protocol for an Observational Study

10.2196/17854 ◽  
2020 ◽  
Vol 9 (7) ◽  
pp. e17854
Author(s):  
Theresa Schrage ◽  
Mirja Görlach ◽  
Christian Stephan Betz ◽  
Carsten Bokemeyer ◽  
Nicolaus Kröger ◽  
...  

Background Cancer patients often suffer from the physical and psychological burden of their disease and its treatment. This is frequently insufficiently identified and addressed in clinical practice. In the context of improving patient-centered care in oncological patients, patient-reported outcomes (PROs) represent an important addition to current routine care. So far, available PRO questionnaires for cancer patients are unsuitable for routine procedures due to their length and complexity. Objective This study aimed to develop and psychometrically test a short questionnaire to measure health-related quality of life (HrQoL) in cancer patients for use in routine care. Methods This observational study consists of two parts: (1) a qualitative study to develop a short questionnaire measuring HrQoL and (2) a quantitative study to psychometrically test this questionnaire in five oncological departments of a comprehensive cancer center. In part 1 of the study, semistructured interviews with 28 cancer patients, as well as five focus groups with 22 clinicians and nurses, were conducted to identify clinically relevant dimensions of HrQoL. The identified dimensions were complemented with related dimensions from empirical studies and reviewed via expert discussion. Based on this, a short instrument was developed. In part 2 of the study, the developed questionnaire was tested in cancer in- and outpatients at five participating oncological clinics using additional standardized questionnaires assessing HrQoL and other important PROs. The questionnaire was presented to more than 770 patients twice during treatment. Results The project started in May 2017 with recruitment for study phase I beginning in December 2017. Recruitment for study phases I and II ended in April 2018 and February 2019, respectively. After study phase II and psychometrical analyses, the newly developed questionnaire measuring the HrQoL of all cancer entities in routine care was finalized. Conclusions With five to six dimensions and one item per dimension, the developed questionnaire is short enough to not disrupt routine procedures during treatment and is profound enough to inform clinicians about the patient’s HrQoL impairments and status. Trial Registration Open Science Framework Registries 10.17605/OSF.IO/Y7XCE; https://osf.io/y7xce/ International Registered Report Identifier (IRRID) RR1-10.2196/17854

2020 ◽  
Author(s):  
Theresa Schrage ◽  
Mirja Görlach ◽  
Christian Stephan Betz ◽  
Carsten Bokemeyer ◽  
Nicolaus Kröger ◽  
...  

BACKGROUND Cancer patients often suffer from the physical and psychological burden of their disease and its treatment. This is frequently insufficiently identified and addressed in clinical practice. In the context of improving patient-centered care in oncological patients, patient-reported outcomes (PROs) represent an important addition to current routine care. So far, available PRO questionnaires for cancer patients are unsuitable for routine procedures due to their length and complexity. OBJECTIVE This study aimed to develop and psychometrically test a short questionnaire to measure health-related quality of life (HrQoL) in cancer patients for use in routine care. METHODS This observational study consists of two parts: (1) a qualitative study to develop a short questionnaire measuring HrQoL and (2) a quantitative study to psychometrically test this questionnaire in five oncological departments of a comprehensive cancer center. In part 1 of the study, semistructured interviews with 28 cancer patients, as well as five focus groups with 22 clinicians and nurses, were conducted to identify clinically relevant dimensions of HrQoL. The identified dimensions were complemented with related dimensions from empirical studies and reviewed via expert discussion. Based on this, a short instrument was developed. In part 2 of the study, the developed questionnaire was tested in cancer in- and outpatients at five participating oncological clinics using additional standardized questionnaires assessing HrQoL and other important PROs. The questionnaire was presented to more than 770 patients twice during treatment. RESULTS The project started in May 2017 with recruitment for study phase I beginning in December 2017. Recruitment for study phases I and II ended in April 2018 and February 2019, respectively. After study phase II and psychometrical analyses, the newly developed questionnaire measuring the HrQoL of all cancer entities in routine care was finalized. CONCLUSIONS With five to six dimensions and one item per dimension, the developed questionnaire is short enough to not disrupt routine procedures during treatment and is profound enough to inform clinicians about the patient’s HrQoL impairments and status. CLINICALTRIAL Open Science Framework Registries 10.17605/OSF.IO/Y7XCE; https://osf.io/y7xce/ INTERNATIONAL REGISTERED REPORT RR1-10.2196/17854


Author(s):  
Hester.R. Trompetter ◽  
Cynthia S. Bonhof ◽  
Lonneke V. van de Poll-Franse ◽  
Gerard Vreugdenhil ◽  
Floortje Mols

Abstract Purpose Chemotherapy-induced peripheral neuropathy ((CI)PN) becomes chronic in 30% of cancer patients. Knowledge of predictors of chronic (CI)PN and related impairments in health-related quality of life (HRQoL) is lacking. We examined the role of optimism in chronic (CI)PN severity and associated HRQoL in colorectal cancer (CRC) patients up to two years after diagnosis. Methods CRC patients from a prospective cohort study participated, with sensory peripheral neuropathy (SPN) 1 year after diagnosis (n = 142). Multivariable regression analyses examined the cross-sectional association between optimism (measured by the LOT-R) and SPN severity/HRQoL (measured by the EORTC QLQ-CIPN20 and QLQ-C30), as well as the prospective association in a subsample that completed measures 2 years after diagnosis and still experienced SPN (n = 86). Results At 1-year follow-up, higher optimism was associated with better global HRQoL, and better physical, role, emotional, cognitive, and social functioning (all p < .01). Optimism at year one was also prospectively associated with better global HRQoL (p < .05), and emotional and cognitive functioning at 2-year follow-up (both p < .01). Optimism was not related to self-reported SPN severity. Significant associations were retained when controlling for demographic/clinical variables, and became non-significant after controlling for depressive and anxiety symptoms. Conclusions Optimism and depressive and anxiety symptoms are associated with HRQoL in CRC patients with chronic (CI)PN. Future research may illuminate the mechanisms that these factors share, like the use of (non)adaptive coping styles such as avoidance and acceptance that may inform the design of targeted interventions to help patients to adapt to chronic (CI)PN.


2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Kristin Zimmermann ◽  
Hadi Mostafaei ◽  
Axel Heidenreich ◽  
Hans U. Schmelz ◽  
Shahrokh F. Shariat ◽  
...  

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