A Study of Factors Influencing Quality of Life in Patients with Progressive Supranuclear Palsy and their Carers
Lead researcher Dr Anette Schrag
Co-researchers Professor Niall Quinn, Professor Michael Trimble, Dr Caroline Selai, Dr Marjan Jahanshahi, Professor A J Lees.
Institution Institute of Neurology, University College, London.
Duration 2 years
Start 1999 End 2001
Grant Awarded £26,200
Aim of research
• to assess the most relevant issues of quality of life (QoL) in patients with PSP,
• to assess quality of life in patients with PSP quantitatively,
• to investigate the factors that determine quality of life in patients with PSP,
• to assess the validity of existing quality of life instruments in patients with PSP,
• to provide the basis for the development of a QoL measure specific for patients with PSP.
About the research
Patients diagnosed with possible or probable PSP in the movement disorders clinics at the National Hospital for Neurology and Neurosurgery were invited to participate in this study. Those who agreed to participate were invited for a clinical evaluation including a neurological examination focusing on signs seen in PSP, completion of clinical severity and disability rating scales, and underwent a semi-qualitative quality of life interview. This evaluation took approximately two hours. A questionnaire booklet was also given to patients and carers to be completed in their own time and returned within the following 3 weeks in the stamped addressed envelope provided. All included questionnaires were self-explanatory but instructions were also given at the diagnostic visit.
Findings
A pool of issues relevant to the quality of life of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients quality of life but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of quality of life with age and gender, as assessed in interviews and on two quality of life instruments. Quality of life deteriorated with increasing disease duration and severity and greater cognitive impairment, and was associated with worse depression scores. The generic SF-36 was not found to be useful to assess quality of life in PSP in this study.
Following this study we went on to develop a new quality of life instrument specifically for patients with PSP.
What does the outcome of this research mean for people with PSP?
The generic EQ-5D and the PD-specific PDQ-39 were found to be useful instruments to assess quality of life in patients with PSP. However, short-comings due to lack of questions on important aspects of quality of life in PSP, which were reported by patients and carers in semi-structured interviews, were identified.
Publications arising from the work
1. Schrag A, Selai C, Davis J, Lees AJ, Jahanshahi M, Quinn N. Health-related quality of life in patients with progressive supranuclear palsy. Mov Disord. 2003;18:1464-9.
2. Schrag A, Selai C, Quinn N, Hobart J. Measuring health-related quality of life in patients with progressive supranuclear palsy. Neurocase. 2005;11:246-9.
3. Schrag A, Selai C, Quinn N, Lees A, Litvan I, Lang A, Poon Y, Bower J, Burn D, Hobart J. Measuring quality of life in PSP: the PSP-QoL. Neurology. 2006;67:39-44.
National/international presentations given on this work
The results of this work have been discussed at various national and international conferences, including several lectures at The PSP Association's Annual Symposium for Carers and Therapists.
This grant enabled us to provide the basis for the development of a new, specific scale for patients with PSP, which was funded by the PSP Society (US).