Completion of the PainData questionnaire - A qualitative study of patients' experiences

This study aimed to explore barriers experienced by patients with chronic pain to completing the PainData questionnaire (PDq) at the Interdisciplinary Pain Centre, Herlev and Gentofte Hospital (HGH). The PDq collects patient-reported data relevant for treatment decisions and research. However, at HGH the response rate prior to treatment initiation is only 67% despite a national response rate of over 80%.

This qualitative study used individual, semi-structured interviews with patients from HGH. Content analysis was performed, and the study adhered to the COREQ guideline.

Fifteen participants (4 men, 11 women; median age 57) were interviewed. Four major categories were identified: (1) challenges originating from pain deterioration and stress hindering questionnaire completion, (2) lack of opportunity for nuanced responses, (3) inadequate patient understanding of the questionnaire's purpose, and (4) appreciation among participants of PainData's recognition of the long-term consequences of chronic pain.

This study highlighted key barriers to completing the PDq, including challenges related to its design and patients' resources. To address these issues, administrators could simplify the questionnaire. Individual clinics could enhance response rates by improving communication about the importance of patient-reported data, refining invitation strategies, and providing additional practical support. Despite these challenges, completion of the PDq encouraged participants to reflect on critical aspects of chronic pain, including its physical and mental health impacts. While the study provided valuable insights, the limited duration of interviews, due to participant fragility, was a notable limitation.