Stage 4. Form indicative questions

Submissions from patients, carers and clinicians may need to be rewritten or rephrased. This is to clarify the precise uncertainty, which may have been submitted with a lot of narrative text, to ensure consistency in the language used and to make it easier to check the question against the evidence base.  Some PSPs have formatted each individual submission and then combined the duplicates.  Others have created formatted indicative, or summary, questions based on groups of similar or duplicate submissions.

Duplicates and very similar submissions can be combined within one indicative uncertainty. Combining submissions can greatly reduce the volume of data that need to be checked for systematic reviews.

This process is also likely to be repeated after the verification of uncertainties, and the removal of non-uncertainties, thus reducing the data further.

PSPs may have to interpret what an intervention might be in a question, where the original submission did not indicate one.  PSPs and the JLA Adviser should make best efforts to ensure that decisions made about interventions are transparent and fair.  Any rewording should ensure that the language is accessible to a lay or non-medical audience but also accurate enough to engage clinicians and specialists.  It is suggested that questions may, where possible, be worded using the PICO format, which is described below. 

This part of the process is interpretative and subjective.  It is therefore vital that Steering Group members are offered opportunities to contribute to and comment on the process to ensure they are satisfied that the interpretation of the submissions is fair, neutral and accurate.  Their experiences as patients, carers or clinicians will help ensure the submissions of those groups are interpreted and captured appropriately in the formatted questions.

Steering Groups will also need to make decisions about the extent to which questions are combined.  Too many very specific questions will be difficult to prioritise and may risk diluting a key theme across multiple questions in the prioritisation.  Conversely, questions that are too broad may be difficult for researchers to interpret or may contain too many elements with no sense of priority between them.  It is recommended that the workings of the Information Specialist are brought to the Steering Group at an early stage of the analysis, to ensure it is informed by members’ input, advice and scrutiny.

Example indicative questions created from responses to the Mesothelioma survey:

Sample of submitted questions and respondent typeSummary/indicative question
  • He found internet support groups helpful. Our GP visited or phoned regularly and was as a concerned friend, unhurried and available [bereaved carer]
  • We also had support locally from a nurse from our local hospice who made home visits and was always available on the phone, as were the district nurses and community nurses [bereaved carer]
  • I have been given various phone numbers contacts so that if I have any questions I can ask.  If I have to leave a message I do always get a return call.  It is good to know that I can make contact if I need to [patient]
 What is the value of weekly telephone support for mesothelioma patients during chemotherapy in reducing hospital admissions, side effects and anxiety?
  • Does exercise such as pilates or yoga help with building patients' lung capacity and easing pain after treatment for mesothelioma? It seems to help some people. What is its effect? [carer]
  • What about the role of exercise and physical activity interventions to help prevent/minimise deconditioning that so often accompanies people’s experience of living with mesothelioma. [clinician]
 What is the best current treatment for breathlessness in mesothelioma patients (e.g. exercise, handheld fans, etc)?
  • Anti-oxidants/vitamins in large doses have been given to 'long' survivors of meso (in USA). Why not in UK? (to boost immune system) [bereaved carer]
  • Can the immune system be stimulated to fight mesothelioma? [patient]
  • Again no one seems to be able to tell me if extra vitamin tablets will help his immune system? I now have started to give him BioCare  multivitamins  to help his immune system after a lot of sickness nausea and not wanting to eat. He has lost over two stones. [carer]
  • What research is taking place into ways to strengthen the immune system to fight this disease (ie, acupuncture, nutrition, exercise, meditation, positive outlook)? I have been having weekly acupuncture since diagnosis and scans show tumour is shrinking slightly.  I am doing all of the above to some degree and would like to know which is the most useful. [patient]
  • His immune system is too low to have any treatment [carer]
 Does boosting the immune system improve response and survival rates for mesothelioma patients?

Example indicative question created from responses to the Scoliosis PSP survey:

Sample of submitted questions and respondent typeSummary/indicative question
  • How effective is the use of hip abduction shorts at night in preventing scoliosis in children with cerebral palsy? [clinician]
  • Does trihexphenidyl prevent scoliosis? [clinician]
  • Is there anything that can be done to help prevent onset of scoliosis in children of scoliosis sufferers? [patient]
  • Linked to risk factors, what might be done to prevent the early development of scoliosis? What can be done to halt its progress e.g. the influence of intensive and individually focused exercise therapies such as Schroth? [patient]
  • Is there evidence for the use of spinal bracing in preventing scoliosis in patients with neuromuscular conditions? [clinician]
  • Can any scoliosis be attributed to a bad gait in the growing period and if so can adjustments be made to a person’s gait to help avoid the onset of scoliosis? [patient]
 What are the best strategies for preventing scoliosis (combining physiotherapy, orthotics, alternative treatments, diet, exercise)?