Refinement of the Distress Management Problem List as the basis for a holistic therapeutic conversation among UK patients with cancer

Abstract

Originally devised in the USA, the Distress Thermometer is being deployed in many cancer settings in the UK. It is commonly used with a Problem List (PL), which has never been validated with a UK population. This study aimed to refine the PL items based upon the concerns of a sample of UK patients attending a regional cancer centre. Existing versions of the PL were scrutinised by a focus group comprising five ex-patients, six health care staff and two academics. This group considered the intelligibility, ambiguity and redundancy of items, sometimes making alternative suggestions or pooling items. The resulting 46 candidate items were sent to 735 patients with mixed cancer, asking them to endorse items that had been 'a source of concern or distress' during their recently finished treatment. We used multivariate logistic regression to evaluate the association between the prevalence of problems and patient characteristics. In this study, 395 (53%) people responded. 'Fatigue, exhaustion or extreme tiredness' (70%), 'worry, fear or anxiety' (45%) and 'sleep problems' (38%) were the most frequently endorsed items. Items not appearing on the original PL were commonly endorsed such as 'memory or concentration' (30%) and 'loneliness or isolation' (15%), suggesting that they should be routinely included in the Distress Thermometer Problem List. The current study offers a more comprehensive PL, on the basis of actual patients' concerns, using words that are understood by UK patients. The reluctance of some patients to volunteer their concerns suggests that screening for distress should be undertaken within the context of a structured conversation.