'He's a surgeon, like I'm not going to waste his time': interviews to determine healthcare needs of people with low anterior resection syndrome after rectal cancer surgery.

Abstract

The aim of this study was to determine the views of people on their healthcare needs when managing their bowel symptoms following an anterior resection. One-to-one, semi-structured interviews were undertaken, after consent and completion of three questionnaires. Results were analysed using a modified framework analysis and presented narratively. Twenty three participants aged 38-75 years were interviewed; 10 were men. Most had low anterior resection syndrome (LARS) scores indicating 'major LARS', Bowel Function Index scores ranged from 28 to 65. The two most bothersome symptoms were faecal incontinence and unpredictable bowel function. Data were grouped into three broad themes: 'treatment consequences', 'strategies and compromises' and 'healthcare needs.' Each theme had four subthemes, such as 'bowel dysfunction' in the theme 'treatment consequences'. Bowel symptoms were common and persistent. Symptom management often required multiple interventions. Expressed healthcare needs included managing expectations through clinician-led information. Participants needed knowledgeable clinicians to enquire about and assess symptoms, provide and reiterate information as well as making an onward referral to enable symptom management. Peers improved the adaptation process through support and advice. Our findings indicate that participants' needs are not being fully met. People with LARS have unmet healthcare requirements needed to meet their individual goals. We propose these are addressed by using the acronym 'LARS': a Learned clinician who Asks and assesses bowel symptoms, Revisiting the topic to address new or persisting symptoms as well as Signposting, advising or referring onwards as needed.