JMIR Publications

ABSTRACT

Background:

Cancer remains a leading cause of morbidity and mortality worldwide. Given its substantial burden, quality of life has become a key outcome in cancer care and research. Patient-reported outcome measures (PROMs) are commonly used to assess quality of life. Although qualitative research is essential for establishing PROM content validity, patient narratives are less often collected and analysed systematically once PROMs are implemented. Adding open-ended responses to quantitative PROM data may provide policy-relevant insights into what patients themselves prioritise.

Objective:

This study has aimed to identify the factors that people living with or beyond cancer across Europe perceive as having the greatest impact on their quality of life.

Methods:

Following a pan-European validation study of the newly developed EUonQoL-Kit – a set of questionnaires designed to assess the quality of life of people living with or beyond cancer in Europe – the responses to the final open-ended question “Having completed the questionnaire, what do you feel most impacts your quality of life?” were collected. Responses underwent qualitative thematic analysis using a coding framework iteratively developed and interpreted by researchers and people with lived experience of cancer involved as ‘co-researchers’.

Results:

Of the 4,284 cancer patients and survivors participating in the EUonQoL-Kit validation study, 3,350 (78.2%) provided a response to the final open-ended question. Factors perceived as having the greatest impact on quality of life were categorised into 23 distinct themes, covering six overarching domains: Physical health, Psychological wellbeing, Social health, Overall health, Healthcare experience and Environment. The most frequently reported factors included physical symptoms, overall health, relationships and connectivity, emotions and feelings, and impact of care pathway.

Conclusions:

This study provides a comprehensive overview of the factors that impact quality of life most in people living with or beyond cancer across Europe. Combining structured PROMs with open-ended patient input may support more patient-centred quality of life measurement and interpretation and help align care and policy priorities with what matters most to patients.