Narratives of young adults with chronic myeloid leukaemia
Research type
Research Study
Full title
Narratives of young adults with chronic myeloid leukaemia regarding their attitudes and feelings towards their disease and its treatment
IRAS ID
263628
Contact name
Jane F Apperley
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
0 years, 8 months, 2 days
Research summary
Chronic Myeloid Leukaemia (CML) is a blood cancer in which the use of drugs targeted against the underlying genetic abnormality now provide an excellent outcome, with the majority of patients having a normal life expectancy. Unfortunately, this is at the expense of taking oral medication daily for life. Unsurprisingly, and for a variety of reasons, some patients are not fully compliant with therapy. Non-compliance (or non-adherence) has harmful consequences including a reduced probability of achieving deep molecular responses, an increased probability of losing previously attained responses and an increased risk of progression to the terminal phase of the disease.
The median age of onset of CML is 60-65 years and it is uncommon in young adults. The impact of the diagnosis of a malignant disease as a young adult, even one with a good outcome, may be additionally complicated by its interference with personal goals and ambitions involving career, relationships and starting a family. Furthermore younger patients are more likely to non-adherent to medication. We wish to study the perceptions of young CML patients of their diagnosis and its impact on their lives, to better understand how they deal with their CML and why some of them may not adhere to treatment. We will use qualitative methodology through narrative interviews to investigate their awareness and actions with respect to their disease and its treatment. The interviews will include sociodemographic data and a question: “tell me your story before, during and after the diagnosis of CML, focusing on the difficulties overcome and to be overcome in living with this disease”. We hope to gain information to improve our care for young adults with CML, to understand the factors associated with adherence and non-adherence to treatment and why some patients do not disclose non-adherence to the health care provider responsible for their care.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
19/NE/0161
Date of REC Opinion
22 May 2019
REC opinion
Favourable Opinion