Development of a pain and discomfort module for use with the WHOQOL-100

Clinicians and researchers have become increasingly interested in the impact of chronic pain (CP) on quality of life (QoL). This report describes the qualitative stages of developing a pain and discomfort module for persons with CP to be used with the UK World Health Organisation generic measure of quality of life (WHOQOL). The aims were to investigate patients' perceptions of CP and its effect on QoL, and to generate items to be used in the development of a module appended to the UK WHOQOL-100. At the first stage (study 1), six focus groups of patients were invited to discuss how living with pain and discomfort affected QoL. At the second stage (study 2), an international web survey was conducted with English-speaking respondents. Ten new facets of QoL were identified by the focus groups: flare-ups, pain relief, anger and frustration, vulnerability/fear/worry, uncertainty, loss/loneliness/feeling alone, positive strategies, communication, guilt and burdening others, and relationship with health care providers. The web-survey confirmed and validated these new facets. Although the WHOQOL-100 is a reliable and valid measure of QoL for use in CP, this study shows that additional areas must be assessed when measuring the impact of CP on QoL.