Research on the impact of NSCLC on patients’ quality of life

• Research type

  Research Study

• Full title

  Qualitative Interviews to Understand the Disease Experience and Impact of Advanced Non-Small Cell Lung Cancer on Quality of Life

• IRAS ID

  158784

• Contact name

  Clive Mulatero

• Contact email

  Clive.Mulatero@leedsth.nhs.uk

• Research summary

  Lung cancer is one of the leading causes of cancer-related deaths worldwide. Non-small cell lung cancer (NSCLC) accounts for approximately 85% of all lung cancers and has a 5 year survival rate of approximately 15%. NSCLC is associated with a variety of symptoms, such as pain, breathlessness, hoarseness and coughing, which can begin prior to diagnosis and continue throughout the course of the disease adversely affecting patients’ functional status and quality of life. In addition there is considerable burden placed on the informal caregivers and families of patients with NSCLC.
  Novartis are looking to further understand the patient experience of advanced NSCLC and its treatment including the burden of the disease on patients and their caregivers/ families. In particular, Novartis would like to understand the aspects of the disease and its treatment that have the biggest detrimental impact on quality of life in order to understand what patients would value most in new treatments.
  Adelphi Values are working with Novartis to perform 20 hour long, semi-structured qualitative interviews with patients with advanced NSCLC to help further understand patients’ experience of the disease, its treatment and care. Ultimately the findings from the qualitative interviews will be used to develop a conceptual model which will outline the burden of disease associated with advanced NSCLC in terms of symptoms, treatment side effects, quality of life, societal and economic impacts and the aspects of the disease, treatment and care which have the biggest detrimental impact on the lives of patients and their caregivers and families. This understanding will help to inform decisions on what aspects of treatment and care (patient defined objectives of treatment) are important to evaluate in assessing the effectiveness of a new intervention and what methodologies should be employed to measure those concepts.

• REC name

  Yorkshire & The Humber - South Yorkshire Research Ethics Committee

• REC reference

  14/YH/1136

• Date of REC Opinion

  22 Sep 2014

• REC opinion

  Further Information Favourable Opinion