Monitoring health related quality of life in survivorship care of young adult survivors of childhood cancer using web-based patient-reported outcome measures : survivors' and health care practitioners' perspectives on the KLIK method

© 2023. The Author(s)..

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.

Medienart:

E-Artikel

Erscheinungsjahr:

2024

Erschienen:

2024

Enthalten in:

Zur Gesamtaufnahme - volume:33

Enthalten in:

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation - 33(2024), 1 vom: 01. Jan., Seite 145-156

Sprache:

Englisch

Beteiligte Personen:

Maas, Anne [VerfasserIn]
Maurice-Stam, Heleen [VerfasserIn]
van den Heuvel, Marloes H [VerfasserIn]
Koopman, Maria M W [VerfasserIn]
den Hartogh, Jaap G [VerfasserIn]
Kremer, Leontien C M [VerfasserIn]
Grootenhuis, Martha [VerfasserIn]

Links:

Volltext

Themen:

Childhood cancer survivors
Digital healthcare
Health-related quality of life
Journal Article
Monitoring
Patient reported outcome measures
Survivorship care

Anmerkungen:

Date Completed 12.01.2024

Date Revised 14.01.2024

published: Print-Electronic

Citation Status MEDLINE

doi:

10.1007/s11136-023-03504-z

funding:

Förderinstitution / Projekttitel:

PPN (Katalog-ID):

NLM361141157