Trajectories of Outcome in Neurological Conditions: Quality of Life (QoL) and neurological disease - Phase 2 Demographics and Clinical Info

Study ID: 12495
Short Title: Trajectories of Outcome in Neurological Conditions Phase 2 Demographics and Clinical Info
Organisation: Portsmouth Hospitals NHS Trust
Location: Queen Alexandra Hospital
Condition: Motor neurone disease
Main Specialty: Neurological disorders
Expected End Date: 30/11/2019
Postcode: PO6 3LY
Contact Name: R&D department
Contact Email:
Active: Yes

Inclusion Criteria

Inclusion criteria: 1.Diagnosed with one of the following diseases (first stroke, traumatic brain injury (TBI), multiple sclerosis (MS),neuromyelitis optica (NMO), spinal conditions or motor neurone disease (MND)). 2. Adults who are capable of answering questionnaires. 3. Capable of informed consent. 4. Have given informed consent. 5. For interviews, adults with the condition who are able to speak to a researcher, for any people with communication difficulties we will interview people with the assistance of a speech therapist or other support if necessary. For the questionnaire phase, we will not exclude people with difficulty writing due to their neurological condition and allow use of a scribe who records the answer chosen by the participant. 5. Participants wanting to do the qualitative work and cross sectional questionnaire stage can be at any time after diagnosis and participants wanting to do the longitudinal questionnaires commence within one year of diagnosis.

Exclusion Criteria

Exclusion criteria: 1.Not capable of informed consent 2. Have not given informed consent 3. Suffering from a concomitant serious medical or psychiatric condition

Study summary:

Quality of Life (QoL) for people with disabling neurological conditions is affected by a range of factors, which have received considerable previous research attention. However clinicians’ knowledge could be enhanced by two areas of additional enquiry. 1) Wide consultation: a) Interviewing a range of people with the conditions (First stroke, traumatic brain injury, multiple sclerosis, neuromyelitis optica, spinal conditions, motor neurone disease) about factors influencing QoL; b) Multi-disciplinary Panel-patients & clinicians experienced in the conditions; c) Draft Questionnaire assessed for relevance by people with the conditions. Our earlier work suggested the importance of QoL factors like fatigue. We will utilise suitable previously-validated Condition-specific-QoL measures. It's possible that unvalidated or little-tested QoL factors will be suggested. If so, we will develop a new measure and test using c); d) Focus Groups patients’ and clinicians’ opinions on QoL factors and priority factors for analysis. Such analysis would have greater validity than that used previously as it would reflect a wide range of patient and clinician opinion. 2) Testing factors for QoL-influence: e) Self-report Questionnaire data from large Cross-Section-of people with the conditions; f) To assess QoL over time, questionnaire participants offered the choice to volunteer to complete the Questionnaire 6 mnths, 12 mnths, and 2 yrs later. Data would be analysed using statistical techniques to determine the nature and strength of relations between different factors. The researchers will develop and test models of factors affecting QoL and compare whether models vary between conditions. The model structure reflects World Health Organisation impairment, activity, and participation areas. The benefit of this approach is that we are testing factors which reflect concerns of people experienced in the conditions to develop a model which may assist interventions to improve QoL.

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