TY - JOUR
T1 - Monitoring health related quality of life in survivorship care of young adult survivors of childhood cancer using web-based patient-reported outcome measures
T2 - survivors’ and health care practitioners’ perspectives on the KLIK method
AU - Maas, Anne
AU - Maurice-Stam, Heleen
AU - van den Heuvel, Marloes H.
AU - Koopman, Maria M. W.
AU - den Hartogh, Jaap G.
AU - Kremer, Leontien C. M.
AU - Grootenhuis, Martha
N1 - Publisher Copyright: © 2023, The Author(s).
PY - 2024/1
Y1 - 2024/1
N2 - Purpose: The KLIK method is a tool to systematically monitor and discuss Health Related Quality of Life (HRQOL) in clinical practice. It has been successfully used in clinical practice in The Netherlands, and has recently been implemented in survivorship care for young adult childhood cancer survivors (CCSs). This study evaluates implementation fidelity and satisfaction of CCSs and healthcare practitioners (HCPs) with the KLIK method in survivorship care. Methods: CCSs’ HRQOL was monitored using the KLIK questionnaire (PedsQL generic 18–30 years). In a mixed-methods design, implementation fidelity was based on registrations, and user satisfaction was assessed with evaluation surveys (CCSs) and semi-structured interviews (CCSs, HCPs). Descriptive statistics and qualitative analysis methods were used. Results: A total of 245 CCSs were eligible for the study. Fidelity was 79.2% (194/245) for registration in the KLIK PROM portal, 89.7% (174/194) for completed KLIK questionnaires, 74.7% (130/174) for its discussion during consultation. Of the eligible CCSs, 17.6% (43/245) completed the study evaluation survey. Five CCSs and HCPs were invited for an interview and participated. CCSs (7.7/10) and HCPs (7.5/10) were satisfied with the KLIK method. Reported facilitators included increased insight into CCSs’ functioning, improved preparation before, and communication during consultation, without lengthening consultation duration. Barriers included CCSs not always completing KLIK questionnaires, incomplete content of the KLIK questionnaire, and the need for customization for CCSs with cognitive disabilities. Conclusion: The KLIK method is a feasible and valuable tool to systematically monitor and discuss HRQOL in survivorship care. Integration of the KLIK method within the organization is essential, with structural support in reminding CCSs to complete questionnaires.
AB - Purpose: The KLIK method is a tool to systematically monitor and discuss Health Related Quality of Life (HRQOL) in clinical practice. It has been successfully used in clinical practice in The Netherlands, and has recently been implemented in survivorship care for young adult childhood cancer survivors (CCSs). This study evaluates implementation fidelity and satisfaction of CCSs and healthcare practitioners (HCPs) with the KLIK method in survivorship care. Methods: CCSs’ HRQOL was monitored using the KLIK questionnaire (PedsQL generic 18–30 years). In a mixed-methods design, implementation fidelity was based on registrations, and user satisfaction was assessed with evaluation surveys (CCSs) and semi-structured interviews (CCSs, HCPs). Descriptive statistics and qualitative analysis methods were used. Results: A total of 245 CCSs were eligible for the study. Fidelity was 79.2% (194/245) for registration in the KLIK PROM portal, 89.7% (174/194) for completed KLIK questionnaires, 74.7% (130/174) for its discussion during consultation. Of the eligible CCSs, 17.6% (43/245) completed the study evaluation survey. Five CCSs and HCPs were invited for an interview and participated. CCSs (7.7/10) and HCPs (7.5/10) were satisfied with the KLIK method. Reported facilitators included increased insight into CCSs’ functioning, improved preparation before, and communication during consultation, without lengthening consultation duration. Barriers included CCSs not always completing KLIK questionnaires, incomplete content of the KLIK questionnaire, and the need for customization for CCSs with cognitive disabilities. Conclusion: The KLIK method is a feasible and valuable tool to systematically monitor and discuss HRQOL in survivorship care. Integration of the KLIK method within the organization is essential, with structural support in reminding CCSs to complete questionnaires.
KW - Childhood cancer survivors
KW - Digital healthcare
KW - Health-related quality of life
KW - Monitoring
KW - Patient reported outcome measures
KW - Survivorship care
UR - http://www.scopus.com/inward/record.url?scp=85168667396&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s11136-023-03504-z
DO - https://doi.org/10.1007/s11136-023-03504-z
M3 - Article
C2 - 37615734
SN - 0962-9343
VL - 33
SP - 145
EP - 156
JO - Quality of life research
JF - Quality of life research
IS - 1
ER -