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  • Quality of Life Research Group

    Charie Frowd with e-fit technology

The Quality of Life Research Group has a broad focus on enhancing health and well-being across the lifespan. The group has three key themes:

  • Condition-specific scale and product development.
  • Psychological evaluation of people with chronic physical and mental health conditions and the quality of life of carers
  • Cognition and Psychobiological aspects of chronic health conditions

Condition-specific scale development

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 Janice Abbott and 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).

 

Psychological evaluation of people with chronic physical and mental health conditions and the quality of life of carers

Janice Abbott’s work has included cross sectional and longitudinal programmes of work in cystic fibrosis, modelling the demographic, clinical and coping variables associated with HRQoL. She has published landmark papers establishing (1) that aspects of patient-reported HRQoL serve as prognostic measures of survival beyond a number of previously known factors in cystic fibrosis and (2) the first longitudinal HRQoL data for cystic fibrosis that assesses the natural progression of HRQoL reporting over many years, providing a benchmark to inform data interpretation and clinical relevance. Additionally, Janice co-led the UK arm of cystic fibrosis International Anxiety and Depression Epidemiological Study (TIDES) (funded by Liverpool Broad Green NHS Trust and the UK Cystic Fibrosis Trust), in which 39 UK Cystic Fibrosis Units participated. The international results of this work enabled the production and implementation of international guidelines for mental health screening in cystic fibrosis (screening for depression and anxiety in patients and their caregivers).

Janice has recently directed a cluster randomized trial aimed at the prevention of obesity in childhood. The work evaluated an educational intervention with the primary aim of preventing gain in overweight/obesity in two-year old children.

Belinda Bradley (Hornby)’s research is focused around the effects of carer burden and bereavement on the well-being and quality of life of carers of patients with Motor Neuron Disease. Evaluation of interventions to help support both carers and patients with MND are being undertaken in collaboration with Lancashire Teaching Hospitals NHS trust and The Preston Motor Neuron Disease Care and Research Centre.

Noreen Caswell is engaged in research to evaluate the transition from child to adult NHS services for individuals with life-long or life-limiting conditions.

Anne Dewhurst’s research predominantly lies within the field of healthcare communication especially in relation to weight management and knee osteoarthritis.  Anne is also interested in the role of emotion within clinical consultations and has expertise in qualitative research methods and undertaking exploratory research to find out why people behave in certain ways.

Anja Fischer has engaged in bio-behavioural approaches towards Multiple Sclerosis (MS) associated depression with the Institute of Neuroimmunology and Multiple Sclerosis at the University Medical Centre Hamburg-Eppendorf, Germany. In addition to researching glucocorticoid resistance as a biological substrate of MS depression and adjusting cut-off values of commonly used questionnaires for clinical populations, she has led a clinical trial on a new self-management intervention called Deprexis that has been shown to effectively reduce self-reported symptoms of depression in people with Multiple Sclerosis. Deprexis is an online-based cognitive behavioural intervention which is currently being considered by NICE for Improving Access to Psychological Therapies (IAPT) services as an alternative to face-to-face therapy for mild to moderate depression in adults. Additionally, in collaboration with Kings College London she has worked on developing a self-help manual aiming to reduce psychological distress in people with Inflammatory Bowel Disease. The goal is to improve psychological care provision in the context of chronic inflammatory and gastro-intestinal illness by embedding it into standard care.

Kathryn Gardner’s research focuses on borderline personality disorder (BPD), with particular interest in emotional and social cognitive processes (e.g., emotion perception/identification, emotion dysregulation, mentalisation) as they relate to BPD and associated behaviours such as self-harm. Kathryn’s interests in the social-cognitive aspects of BPD traits has resulted in collaborations with clinicians delivering Mentalisation Based Treatment (MBT), a highly effective treatment for Borderline Personality Disorder (BPD).

Kathryn has an interest in the theoretical models of self-harm (e.g. social learning theories), help-seeking for self-harm, and self-harm within the school environment. She is particularly interested in self harm in adolescence: the reasons for (functions of) self-harm, especially the non-affective drivers such as self-harm as a means of eliciting care from others. Kathryn is Joint coordinator of SSHaRE NoW (Suicide and Self-Harm Research Exercise: North West).

Nicola Graham-Kevan’s research focuses on exploring psychological processes associated with criminal behaviour and victimisation experiences. These processes include those that increase risk (e.g., exposure to adverse childhood and adulthood experiences, dysregulated emotions) and those that are protective (e.g., post-traumatic growth, compensatory consequences of domestic abuse, interventions). Nicola’s interests have led to her collaborating with others across the world including Europe, Asia, America and Oceania. Nationally, Nicola works with stakeholders including all four regional Offices of the Police and Crime Commissioner; Constabularies, Her Majesty’s Prison Service, Community Rehabilitation Companies and third sector charities. 

Nicola has an interest in theoretical models of risk and recovery and how these can be applied to interventions for offenders and victims. Her research has informed programmes currently being delivered across a range of services across many stakeholder organisations. Evaluations of these interventions suggest that they make an important contribution to the quality of life of some of society’s most vulnerable people. Nicola is involved in numerous projects as part of her role as Lead for Violence and Aggression for the UCLan Criminal Justice Partnership. She is co-author of an evidence assessment on male victims of domestic abuse commissioned by the European Union.

Impact

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 endeavor 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.

Events and News

Janice Abbott is a member of the International Guidelines Committee, formed by the US Cystic Fibrosis Foundation and European Cystic Fibrosis Society, to develop and implement guidelines for the assessment and management of anxiety and depression in cystic fibrosis.

Munirah Bangee, a PhD student in the School of Psychology under the supervision of Pamela Qualter, has recently returned from a research visit to the University of Chicago. Munirah work with Professors John and Stephanie Cacioppo in their High Performance Electrical Neuro Imaging Laboratory on an ERP study of loneliness and social threat.

Kathryn Gardner has developed a website OnlinePsychResearch that provides links to resources on how to conduct internet-mediated research. The site gives links to live psychology-related studies across the world.

Pamela Qualter has received a grant from ESRC (2013) with Steve Brown and Bridget Young (University of Liverpool). The award of £338,118.76 is to examine social scripts and alcohol related aggression in alcohol naïve adolescents.

Dr Emma Bray was featured in the Winter 2016 edition of BreakThrough magazine talking about being a Guild Research Fellow and about her research into measuring blood pressure (Pages 6 - 9).