A qualitative study of patient perspectives of health-related quality of life in colorectal cancer: comparison with disease-specific evaluation tools

Aim  Little is known about the factors that patients with colorectal cancer (CRC) consider as important in shaping their health-related quality of life (HrQoL) and whether these are adequately represented by currently used HrQoL instruments. The aim of this study was to determine which areas of HrQoL are important to patients with CRC and to establish whether these areas are represented by validated questionnaires. Method  Semi-structured interviews were conducted with 20 patients who were undergoing treatment or follow up for potentially curable CRC. The areas of HrQoL that were important to the patients were identified from the interview data using a qualitative thematic framework analysis. These themes were then compared with the item content of two CRC-specific HrQoL questionnaires, FACT-C and QLQ-C30/CR38. Results  The interviews identified 10 themes considered by patients to be important determinants of their HrQoL. These comprised control, normality, fatigue, uncertainty, information, emotional support, self-image, coping, symptoms and emotionally challenging events. Both HrQoL instruments contained questions that concerned some of the themes identified, but none of the FACT-C scales and only three from QLQ-C30/CR38 produced scores from which clinicians could identify problems in these areas. Conclusion  Identifying and addressing areas of concern for patients may assist clinicians in improving HrQoL outcomes. However, validated instruments currently used in CRC provide little information with regard to these areas.