Validated constipation symptom and quality-of-life measures neither reflect patient and clinician concerns nor use words familiar to patients

Abstract

Patients' self-reported constipation symptoms, preferred terminology and quality of life (QoL) issues were explored through 14 semi-structured and five unstructured interviews. In a modified Delphi study, 11 clinicians rated the clinical importance of patient-reported symptoms and QoL issues. Results were compared with validated constipation assessment tools, using content and inductive thematic analysis methods. Three themes were identified: language describing constipation; symptoms and toilet behaviours; and QoL issues. Preferred terms for describing faeces and defecating were identified. Few of the 32 troublesome symptoms or QoL issues reported by participants appear in existing validated tools. All clinicians rated uncontrolled leakage of stool as clinically important, yet this is absent from assessment tools. It was concluded that present validated tools neither reflect patient concerns nor use language familiar to them, which may generate inaccurate assessment. A larger study may inform development of new patient-reported outcome measures.