Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review

Abstract

Background: Malignant bowel obstruction occurs in up to 50% of people with advanced ovarian and 15% of people with gastrointestinal cancers. Evaluation and comparison of interventions to manage symptoms are hampered by inconsistent evaluations of efficacy and lack of agreed core outcomes. The patient perspective is rarely incorporated. Aim: To synthesise the qualitative data regarding patient, caregiver and healthcare professionals’ views and experience of malignant bowel obstruction to inform the development of a core outcome set for the evaluation of malignant bowel obstruction. Design: A qualitative systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively ( https://www.crd.york.ac.uk/prospero , CRD42020176393). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus databases were searched for studies published between 2010 and 2021. Reference lists were screened for further relevant publications, and citation tracking was performed. Results: Nine papers were included, reporting on seven studies which described the views and experiences of malignant bowel obstruction through the perspectives of 75 patients, 13 caregivers and 62 healthcare professionals. Themes across the papers included symptom burden, diverse experiences of interventions, impact on patient quality of life, implications and trajectory of malignant bowel obstruction, mixed experience of communication and the importance of realistic goals of care. Conclusion: Some of the most devastating sequelae of malignant bowel obstruction, such as pain and psychological distress, are not included routinely in its clinical or research evaluation. These data will contribute to a wider body of work to ensure the patient and caregiver perspective is recognised in the development of a core outcome set.

The range and suitability of outcome measures used in the assessment of palliative treatment for inoperable malignant bowel obstruction: A systematic review

“…For example, the resumption of oral intake, when measured to evidence the mechanical resolution of obstruction, does not reflect the psychological effects on the patient. The inability to eat is often experienced as a deep loss on a social and emotional level [19] , and the degree and duration of its restoration are likely to have deep implications for quality of life. Further, issues to do with patient comfort are rarely discussed in any depth in the discussion sections of study reports.…”

“…Studies were also excluded if the abstract cited clinical success as the sole outcome with no accompanying patient-relevant definition of 'success'. Qualitative studies were excluded; a systematic review of qualitative studies was undertaken separately (PROSPERO ID: CRD42020176393) [19] . Papers were collated using Endnote X7 (Thompson Reuters, New York, USA) and duplicates removed.…”

What do we do with all the evidence for symptoms in palliative care?

“…In this issue, several articles on symptoms or symptom management bring into sharp focus this concern. [12][13][14] It includes a range of studies, all with methodological pros and cons. They can all add to the evidence base which we can appraise and potentially integrate into our individualised practice.…”

“…17 A qualitative systematic review brings together the voices of patients and caregivers, and the health care professionals who care for them. 12 We know patients often want to participate in studies. Many want agency to be heard.…”

“…18 These studies suggest further research. [12][13][14] But palliative care needs an ecosystem that supports only the very best science, using the most appropriate methods that apply to patients with messages that are truly accessible to clinicians. This ecosystem extends to us.…”