Table 1: The NSF quality requirements and their relevance to the questionnaires
NSF quality requirement
Patient -centred care
Diagnosis and treatment
Emergency and acute management
No (relevant to head and brain injuries)
Early and specialist rehablilitation
No (relevant to conditions where recovery is possible, such as brain injury)
Community rehabilitation and support
Providing equipment and accomodation
Providing personal care and support
Supporting family and carers
Caring for people with neurological
conditions in hospital or other health
and social care settings
Additional sources of information included a review of the literature; qualitative interviews with patients and carers; and the input of a patient and carer research advisory group. The literature review involved reviewing and updating the NSF, reviewing the most up to date scientific literature and reviewing guidelines for the care and treatment of the different conditions. The latter were mostly guidelines of the National Institute for Clinical Excellence, but also included guidelines or recommendations from the charities such as the Motor Neurone Disease Association, Multiple Sclerosis Society, Parkinson’s Disease Society and Carers UK.
A total of 43 qualitative interviews have been carried out with patients and carers. The questions for the interviews were derived from the NSF and findings of the literature review. The information from the interviews was used to inform the design (both content and wording) of the questionnaires. Further input into the questionnaire development came from the wider research team (including amongst others a statistician and a neurologist) and a research advisory group (consisting of patients and carers). At various stages, the wider research team and the research advisory group were presented with drafts of the questionnaires that they commented on, and the questionnaires were re-drafted accordingly. The questionnaires were also commented on by experts from the Health Care Commission (HCC) and the Commission for Social Care Inspection (CSCI). Also, several patients and carers commented on a version of the questionnaires before the preliminary survey was carried out, which led to a final re-drafting before the preliminary study was carried out (flowchart 1).
Early in 2008, a preliminary study was conducted for which 484 questionnaire packs were mailed out. Each pack included a patient and a carer questionnaire, as well as covering letters and information sheets for patients and carers respectively, and pre-paid return envelopes. The research team worked together with the respective charities (the Motor Neurone Disease Association, the Multiple Sclerosis Society and the Parkinson’s Disease Society), and some of their local branches, for mailing the survey to their members. If applicable, patients were asked to hand the ‘carer questionnaire’ to the person they considered their main carer. By ‘carer’, we mean a family member or friend who provides unpaid care (such as help with dressing and feeding or help with housework) to the patient.