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Ensuring that a new medicine improves or maintains a person's quality of life is important. 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). Abbott's expertise has contributed to the development of policy/guidelines concerning quality of life measurement in clinical trials for the European Medicines Agency and European Cystic Fibrosis Society. The instruments have been adopted internationally with the LupusQoL providing a global business opportunity for a US translation company. At the request of pharmaceutical companies, the LupusQoL is translated into the numerous languages required for use in their multi-national clinical trials of new medicines.
The work of Cardiff University's Wound Healing Research Unit revealed a need for, and led the development of, a disease-specific Health-related Quality of Life (QoL) instrument; the Cardiff Wound Impact Schedule (CWIS). CWIS is able to quantify in a psychometrically sound manner the impact of chronic non-healing wounds upon a patient's QoL. The tool, a first of its type, is accurate and sensitive to changes in the healing status of chronic wounds, particularly those of the lower limb. CWIS has been adopted internationally advantaging QoL assessments in both commercial and practice settings to yield economic and practice impacts as well as direct patient benefits.
Research carried out by LSHTM to develop and test patient reported outcome measures (PROMs), which measure health outcomes from the patient perspective, has demonstrated the feasibility of routinely collecting such measures before and after elective operations. In 2009, the Labour government mandated that PROMs should be collected on all NHS patients in England undergoing one of four surgical operations, a policy endorsed by the coalition following the 2010 election. This remains the only nationwide programme of its kind worldwide, providing essential data for comparing providers' performance, patient choice and other quality improvement approaches.
Work led by Professor Nick Barber at the UCL School of Pharmacy showed that a majority of patients have problems soon after starting a new medicine for a chronic condition, and this led to the development of a post-consultation intervention by pharmacists that was shown to be more effective and cheaper than normal care. This entered Department of Health policy for pharmacy in 2008 and Barber helped design the New Medicines Service that was launched in October 2011. This service is offered by community pharmacists in England and by the end of May 2013 over a million patients had received the service. The intervention increases patient adherence to medication, thus improving quality of care, and reducing cost to the NHS from wastage. It also improves patient safety through better identification and resolution of adverse effects.
Between 1996 and 2013 researchers at Swansea University evaluated service initiatives and changing professional roles associated with the management of patients with debilitating gastrointestinal disorders. This work showed the clinical and cost effectiveness of two main innovations: open access to hospital services for patients with inflammatory bowel disease; and increased responsibility for nurses, particularly as endoscopists. Our evidence has had a broad, significant impact on: national policy through incorporation in NHS strategies, professional service standards and commissioning guides; service delivery through the provision of increasing numbers of nurse endoscopists and the wide introduction of nurse-led open access to follow-up; and patient care, as documented in sequential national audits in 2006, 2008 and 2010.
Researchers at the University of Leeds have designed and developed new approaches and technologies for cancer patients to self-assess their symptoms and quality of life. The work focused on electronic methods for collecting patient-reported outcome measures (PROMs), developing PROMs for neglected areas of patient care, and running trials of these techniques. These approaches produced sizeable patient benefits including improved symptom control and better quality-of-life. These findings have influenced clinical guidelines in the UK and Canada, NHS policy and the endorsement of PROMs in the Health and Social Care Act (2012). Electronic PROMs systems based on the Leeds research have been implemented locally, nationally and internationally, making measurable improvements to patient welfare and health, such as a reported significant increase in completion of chemotherapy treatment.
Research by the University of Huddersfield's School of Applied Sciences has played a major role in addressing the difficulties experienced by people who use inhalers. The work has adapted existing methodologies so they can mimic how patients use nebulisers and dry powder inhalers, thereby enhancing understanding of a problem that affects millions globally. Findings and insights have been incorporated in "gold standard" guidelines that are influencing practice and policy around the world, while lead researcher Professor Henry Chrystyn's methods and techniques have become central to academic, practitioner and industry efforts to tackle the issue at national and international level.
Collaborative research conducted by the Biological Sciences Research Group (BSRG) has brought considerable benefits for the treatment of cancer patients. Experimental research has shown that the shelf-life of the biological cancer drug Herceptin can be greatly extended thereby bringing significant economic benefit through cost savings. A clinical trial has demonstrated that yoga benefits the health and well-being of patients with gynaecological cancer leading to prospects of improved cancer survivorship. Sowter provides research-informed oncology training for NHS clinical trials staff throughout the National Institute of Cancer Research UK network (NCRN), and has supervised two senior registrars through their MD qualifications.
Fears of recurrence (FoR) are the major concern for cancer patients. The Adjustment of Fear, Threat or Expectation of a Recurrence (AFTER) was initiated in Liverpool and developed significantly at the University of St Andrews by the originator (Prof. Humphris) and colleague Dr Ozakinci for general cancer patients, including an innovative validated Fear of Recurrence measure. The measure identifies patients with high FoR in NHS oncology services to enable psychological therapeutic treatments to be targeted. AFTER is being widely employed with cancer survivors successfully in UK cancer services and international oncology centres to reduce their FoR and depression.
The research has led to a clear and accepted definition of dignity which have been adopted by health care organisations and professionals. It has raised the awareness of professionals and carers of the needs and means to enhance patient's dignity. Resources have been developed and used to train and support staff to improve attention to patient dignity. The research has also influenced changes in national policy such as reducing use of mixed sex accommodation, and changes to healthcare practices such as improved hospital gown design and use of bed curtain clips and notices. The resources on patient dignity continue to be disseminated and adopted and inspired the Velindre Cancer Centre group which won the 2013 Nursing Times Dignity Award.