Research Projects
Cystic Fibrosis
Patient-reported outcome measurement in cystic fibrosis
This programme of work aims to:
Develop and evaluate patient-reported outcome measures (e.g. health-related quality of life; pulmonary exacerbations).
Evaluate the use of health-related quality of life measures in clinical trials.
Evaluate cross-cultural differences in health-related quality of life.
Identify the demographic, clinical and psychological factors that explain patient-reported health-related quality of life
Evaluate the associations between health-related quality of life, disease progression and survival.

National Collaborators: Professor Kevin Webb, South Manchester NHS Trust; Dr Steve Conway, Alison Morton, Leeds NHS Trust; Dr Helen Rodgers, Gail Milne, Tayside University Hospital NHS Trust; Professor Stuart Elborn Queen’s University and Belfast City Hospital; Dr Judy Bradley, University of Ulster.
International collaborators: Dr Uli Baumann, University Medical School Hanover, Germany; Professor Fiorella Monti, Dr Francesca Lupi, Dr Francesca Gobbi, University of Bologna, Italy; Dr Trudy Havermans, Kris Colpaert, University Hospital Leuven, Belgium.
Funding received from Chiron and NIHR

The International Anxiety and Depression Epidemiological Study (TIDES)

This study aims to:
Estimate the prevalence of depression and anxiety in patients with CF ages 12 through adulthood and parent caregivers of children with CF ages birth to 18.
Identify risk factors associated with symptoms of depression and anxiety.
Evaluate how depression and anxiety influence health outcomes (particularly number of exacerbations and hospitalisations, lung function and nutritional measures).

Janice is Co-lead for the UK arm of this international study with Dr Alistair Duff, Leeds NHS Trust and Carolyn Cowperthwaite, Broadgreen Hospital NHS Trust.

National Collaborators: Currently over 50 UK Cystic Fibrosis Units
International collaborators include: Professor Alexandra Quittner, University of Miami, US; Professor Lutz Goldbeck, University of Ulm, Germany
Funded by Broadgreen NHS Trust and the UK Cystic Fibrosis Trust.

Body image and eating behaviours in cystic fibrosis

This programme of work aims to:
Evaluate perceived body image and eating behaviour in adults with cystic fibrosis and healthy controls.
To examine the effect of nutritional status on perceived body image, eating behaviours and quality of life in adults with cystic fibrosis.
To examine the effect of diabetes on perceived body image and eating behaviours in adults with cystic fibrosis.

Collaborators: Professor Kevin Webb, Helen Mussen, Joan Fitzjohn, South Manchester NHS Trust; Dr Steve Conway, Alison Morton, Leeds NHS Trust.
Adherence with therapies in cystic fibrosis

This programme of work aims to:
Evaluate the associations between health beliefs, ways of coping and treatment
adherence in cystic fibrosis
Evaluate treatment non-adherence within the Necessity – Concerns Framework

Collaborators: Dr Steve Conway, Alison Morton, Leeds NHS Trust.

Parenting with cystic fibrosis

This programme of work aims to:
Undertake a review of Communication and information about Reproductive and Sexual Health in Cystic Fibrosis
Assess the experiences of parents with cystic fibrosis and how they balance their self-care and care for the child.
International collaborators:Dr Trudy Havermans, Kris Colpaert, Professor Kris De Boeck, Professor Lieven Dupont, University Hospital Leuven, Belgium.

Systemic lupus erythematosus

This programme of work aims to:
Develop and validate a disease-specific health-related quality of life instrument for adults with systemic lupus erythematosus (LupusQoL).
Identify whether demographic or clinical factors explain patient-reported health-related quality of life
Describe the patient perspective of SLE in relation to Health-related Quality of Life Concepts.
Undertake a systematic review of HRQOL measurement in SLE.

Currently, a national multi-centre study aims to evaluate the sensitivity to change of the LupusQoL investigating its ability to: (a) detect an improvement in HRQoL following effective treatment of a flare, (b) detect deterioration in HRQoL e.g. when treatment has undesirable and troublesome side effects or the patients fail to have their disease controlled by their initial treatment plan and (c) estimate the minimum clinical important difference/s (MCID).

Collaborators: Dr Lee-Suan Teh, Dr Kathleen MacElhone, East Lancashire NHS Trust; Dr Ian Bruce, Central Manchester University Hospital Trust; Dr Joanna Shelmerdine, Dr Yasmeen Ahmad, Central Manchester University Hospital Trust; Dr Caroline Gordon, Kate Peers,, University of Birmingham; Professor David Isenberg, Ada Franklin-Stevens,, Middlesex Hospital, London; Dr Bridget Griffiths, Freeman Hospital, Newcastle; Dr Mohamed Akil, Hallamshire Hospital, Sheffield; Dr Peter Maddison, Ysbyty Gwynedd, Bangor. Funded by Arthritis Research Campaign.

Percutaneous endoscopic gastrostomy (PEG) feeding

This programme of work aims to:
Evaluate the impact of percutaneous endoscopic gastrostomy feeding on daily life in children and adults.
Compare the perceptions of patients, family carers, nurses and dietitians regarding decision making and treatment evaluation in PEG feeding.

Collaborator: Dr Ailsa Brotherton (UCLan)

Health-Related Quality of Life and coping in children with inflammatory bowel disease (IBD)

This programme of work aims to:
Culturally adapt and evaluate a quality of life questionnaire (IMPACT) for children and adolescents with inflammatory bowel disease
Evaluate parental and child coping with childhood inflammatory bowel disease
Examine the associations between coping and quality of life in children with inflammatory bowel disease
National collaborators: Dr Cassie Ogden, University of Chester; Dr Adrian Thomas, North Manchester NHS Trust; Professor Peter Aggett, University of Lancaster. International collaborators: Dr Hester van Der Zaag Loonen, Dr Herbert H Derkx, Academic Medical Centre, Amsterdam, Netherlands.

Funded by Crohn’s In Childhood Research Association

Primary Immunodeficiency

As part of a German Network programme this study aims to:
Develop a structured age specific educational programme for patients with antibody deficiency syndrome to perform home based subcutaneous immunoglobulin replacement therapy
Assess changes of health related quality of life, treatment satisfaction, and medical condition following participation at the programme
Set up a platform for the development of a consensus on subcutaneous immunoglobulin therapy, for shared standards of care, and for a close co-operation between health care professionals and patient organisations.
International collaborators: Dr Ulrich Baumann (Hanover Medical School); Dr Ilka Schulze (University Hospital Freiburg).

Funded by the Federal Ministry for Education and Research (Germany).