Quality of Life Research Group

This includes the development, psychometric evaluation and clinical interpretation of health–related quality of life (HRQoL) instruments (cystic fibrosis, lupus, inflammatory bowel disease and obesity). For example:

Janice Abbott leads international programmes of work in HRQoL measurement in cystic fibrosis and working with East Lancashire NHS Trust, has developed the first HRQoL instrument in systemic lupus erythematosus informed by service users (LupusQoL). The instrument is translated into more than 90 languages and is being used in international clinical trials. A multi-centre study, funded by Arthritis UK, has evaluated the sensitivity to change of the LupusQoL allowing clear interpretation of the instrument to guide decision making by end users.  

The development and evaluation of a scale to measure change in HRQoL in obesity interventions is being undertaken by and Janice Abbott, Anja Fischer.

Condition-specific product development

The development and validation of a nocturnal enuresis pre-void device that will, a) replace post-void alarms, b) serve as a diagnostic tool, and c) act as a ‘conditioning’ device, where children will undergo behaviour change in response to the alarm stimulus, is being undertaken by Noreen Caswell in collaboration with Neurologists at the Royal Preston Hospital, and UCLan engineering and technical departments. In addition, the development and impact of a device that falls under the remit of ‘Robot Animal Assisted Therapy [RAAI]’ is being evaluated. The effect of the ‘Robot Animal’ on the QoL of people with neurological and psychiatric disorders is being investigated..

Cognition and Psychobiological aspects of chronic health conditions

Janice Abbott leads programmes of work examining the cognitive function of people with chronic health conditions. Cognitive function is being evaluated in people with cystic fibrosis and executive functions (both laboratory and self-reported) are being evaluated across the weight spectrum in a large community sample. Laboratory work to examine how cognition may be affected by obesity uses functional near-infrared spectroscopy (fNIRS). 

Belinda Bradley (Hornby) is investigating the psychobiological correlates of mild anxiety and their treatment. She has investigated the effects of essential oils on anxiety.in both human and rodent validated preclinical models of anxiety. Interests in the human population involves the measurement of mild anxiety in the lab using psychophysiological (BPM, HRV, EDA, facial EMG and facial expressions), neuroendocrine (cortisol) and self-report psychological (STAI). 

Health-related quality of life measurement in chronic disease

Ensuring that a new medicine improves or maintains a person’s quality of life is important. Janice Abbott’s longstanding collaborative relationship with health professionals and service users has enabled the development of two patient-reported, quality of life instruments (CFQoL, LupusQoL), and allowed service users a voice in their healthcare.

Cystic Fibrosis: Her expertise has contributed to the development of policy/guidelines concerning quality of life measurement in clinical trials; for example, the European Cystic Fibrosis Society consensus report concerning clinical trials in cystic fibrosis. Subsequently, as part of the European Framework 6 programme she led the European quality of life group to produce the guidelines for the measurement of quality of life in clinical trials in cystic fibrosis. Additionally, she was a member of an interdisciplinary group of world experts on Cystic Fibrosis who worked with the European Medicines Agency (EMA). The EMA is the body that regulates, licences and constantly monitors the safety of medicines across the European Union. Together with European drug regulators, representatives from international pharmaceutical companies, and patient representatives, they discussed and compiled current scientific evidence on outcome measures for evaluating medicines targeting CF lung disease. The proceedings were observed globally by the US Food and Drugs Administration, Pharmaceuticals and Medical Devices Agency, Japan and Health Canada via broadcasting.

Systemic Lupus Erythematosus: The LupusQoL has attracted global interest from the pharmaceutical sector. Inclusion of a patient-reported quality of life instrument in clinical trials is essential and will enable a pharmaceutical company to gain approval to market a drug and make licensing claims as to the effectiveness of the drug from the patient perspective. Driven by demand from pharmaceutical companies to translate the LupusQoL into numerous languages so that the instrument could be used in multi-national drug trials, a US translation company, Corporate Translations Inc, have translated and culturally validated the LupusQoL into numerous languages. It has been used successfully in 51 countries and in over 80 different languages. The LupusQoL is currently being used in several phase 111 clinical trials (predominantly in North America) to evaluate whether a specific drug can improve a patient’s quality of life.

Improving mental health in people with cystic fibrosis and their caregivers

To evaluate the prevalence and predictors of depression and anxiety in adolescents and adults with cystic fibrosis, and their caregivers, a large international study, the Cystic Fibrosis International Depression and Anxiety Epidemiological Study (CF TIDES) was undertaken. This international endeavour involved nine European countries and the US. The UK arm of the work was co-led by Janice Abbott. Elevated symptoms of depression (requiring further assessment) were found in 10% of adolescents, 19% of adults, 37% of mothers and 31% of fathers. Elevated symptoms of anxiety were reported by 22% of adolescents, 32% of adults, 48% of mothers and 36% of fathers. Of 1,122 parent-teen dyads, if either parent screened positive, the adolescent was twice as likely to report elevated depression or anxiety. Additionally, disordered mood was associated with negative effects on life quality and key health outcomes. Based on these results, the US Cystic Fibrosis Foundation (CFF) and the European Cystic Fibrosis Society (ECFS) established a multidisciplinary, expert, International Committee in Mental Health to develop guidelines for the diagnosis and management of depression and anxiety in CF. The guidelines recommended annual mental health screening, with specific screening questionnaires, for all patients (aged 12 years+) and their primary caregivers. The development of flexible algorithms – a step by step guide for the clinician in the systematic screening, diagnosis and management of depression and anxiety was also developed. The dissemination and implementation of these guidelines is being undertaken on an international level with the aim of improving the mental health of people with CF and their caregivers. Janice was member of the ‘core group’ who produced the guidelines and currently leads the European Cystic Fibrosis Mental Health Working Group and is a member of the US Mental Health Advisory Committee.