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DELPHI survey Malignant bowel obstruction

Malignant bowel obstruction (MBO) remains a challenging condition facing palliative care teams. Inoperable MBO is a condition experienced by some cancer patients when the intestine becomes blocked by a tumour which cannot be removed by surgery.

It is one of the most distressing complications of cancer, causing nausea, vomiting, abdominal distension, colic, pain and constipation, and has a profound effect on quality of life.

Take part in our survey

As part of our study, we are conducting a survey to help us to identify which measures are the most important for clinical research, and which are most relevant to patients. You can take part in the survey if you are a patient, caregiver or health care professional with experience of malignant bowel obstruction.

Your responses in this survey will help to improve the experiences of future patients with inoperable MBO and their caregivers, and improve the approach to inoperable MBO for health care practitioners and researchers.

Complete the survey

 

Why are we doing this research?

Current evidence informing the palliation of inoperable MBO is inadequate; clinical guidelines favour somatostatin analogues, but recommendations are based largely on case series and insufficiently powered clinical trials.

Most importantly, there are no data to indicate that commonly used outcome measures reflect what is important to patients.

The lack of consistent patient-relevant outcomes has led to varied evaluation of MBO across clinical trials and inconsistent recommendations in clinical guidelines.

Our RAMBO study aims to develop a set of standard measurements which can be used to assess MBO patients in clinical practice and routine care. The study is funded by Marie Curie, and is registered with COMET, the Core Outcome Measures in Effectiveness Trials group.

What will I be asked?
  • The survey will list outcomes related to IMBO which can be measured, such as ‘pain’, ‘nausea’ or ‘wellbeing’.
  • You will be asked to rate each outcome measure for importance on a scale of 1 to 9 in two settings (research and day-to-day clinical care). You will be offered an opportunity to explain the reasoning behind your answer in words if you wish to do so.
  • After the first round, you will be able to see how other people have responded to the survey and amend your answers in round two.
  • This survey asks questions about symptoms of IMBO, which can be distressing to experience.
Are my answers confidential?

All survey answers will be anonymised – your name and personal details will not be shared with other survey respondents.

Anonymised data from people taking part in the survey will be summarised by group (e.g. palliative care specialists, cancer specialists, clinical nurse specialists, patients, caregivers) and fed back to all survey respondents between each round.

Ethical approval to conduct the study has been granted by the Wales Research Ethics Committee 5 (reference: 19/WA/0340).

Any information that you provide, including any quotations that we use from explanations of responses, will be anonymised to make sure that you cannot be identified. 

How are my answers used and how will the data be protected?

By participating in this survey, you are agreeing that we may include your survey responses (anonymously) in future reports, professional journals and research.

Data may also be shared with colleagues in the UK and internationally. Anonymised study findings may be presented at conferences, in promotional material (e.g. press releases) and in educational settings.

In line with University of Hull policies and General Data Protection Regulations (GDPR; EU 2016/679) and Data Protection Act 2018 (DPA 2018), your research data will be kept securely for 10 years after the study is completed and securely destroyed at the end of the 10 years.

If you provide us with contact details for follow up, these will be kept securely for up to a year after the study ends and securely destroyed when no longer needed. Anonymised data will be archived so that it can be used by other researchers.

All data collected in the on-line survey will be held securely by the survey software provider, Qualtrics, and retained by the University of Hull in accordance with the GDPR; EU 2016/679 and DPA 2018