THE EXPERIENCE OF LIVING WITH BRAIN METASTASES DR CAREY FAY SMITH GREGYNOG 2009

THE EXPERIENCE OF LIVING WITH BRAIN METASTASES “Oh, [life’s] altered a lot, because I was always very, very busy. I was always doing people’s gardens. I was out when it broke light to tea time, you know. Every day. And uh, can’t do it now, can I?” Brian, 67 lung cancer with brain mets

THE EXPERIENCE OF LIVING WITH BRAIN METASTASES “Ironically I know this is going to sound perverse. The worst thing was not the fact that I was told I had the cancer on the brain, because I knew they could probably do something about it, was the fact that I couldn’t drive for two years. ‘cos suddenly that meant… God you know… the implications are far-reaching. I was suddenly dependent on everybody, ‘cos I mean, I know where we live, I can walk into town, but because of everything that was going on, that wasn’t a possibility”. Janet, 47 breast cancer with brain mets

THE EXPERIENCE OF LIVING WITH BRAIN METASTASES Devastating diagnosis 20 – 40% of patients with cancer Increased incidence due to increased detection rates as well as progress in systemic therapies which extend patient lives Very poor prognosis Marked impact on quality of life

THE EXPERIENCE OF LIVING WITH BRAIN METASTASES “ emerging standards suggest the need to evaluate the impact of disease and/or treatment by means of direct feedback from patients regarding their physical, social and emotional functioning” Aaronson N, Oncology(1990),Vol 4 no 5, pp 59 – 66.

THE EXPERIENCE OF LIVING WITH BRAIN METASTASES To determine the functional impact (physical, psychological and social) of brain metastases, we need to explore the experience from the patient’s perspective.

RESEARCH STUDY A qualitative study using semi-structured interviews in patients with a diagnosis of brain metastases from either breast or lung cancer primaries Transcribed verbatim Analysed using interpretative phenomenological analysis (IPA)

AIMS To explore how the diagnosis of brain metastases has affected patients in their daily lives To capture the experiences of individual patients with brain metastases and their perception of how the diagnosis has impacted on how they function To explore the meanings they attach to these personal experiences

AIMS THUS: to understand from the patient’s point of view, how living with brain metastases has affected the way in which they function physically, psychologically and socially

OBJECTIVES To further expand on the account of these experiences To explore what has been detrimental to their functional status To explore what has been of benefit to their functional status To explore what aspects of care the individual patients perceive would improve these experiences

OBJECTIVES ULTIMATELY : To determine what positive palliative interventions could be integrated into care to improve their quality of life

SAMPLE Interview 5 – 7 patients of each diagnosis (breast ca or lung ca) with brain metastases Eligibility criteria Exclusion criteria Written information provided

INTERVIEW PROCESS Informed consent Screening at time of interview with validated MSQ (mental status questionaire) Semi-structured interview Set but open ended questions Recorded via digital voice recorder Allow patient to discontinue at any point

ANALYSIS Interviews transcribed and anonymised Interpretative phenomenological analysis (IPA) Qualitative method Concerned with the patients “lived experience”- ie explores the phenomenon Researcher’s own conceptions required to make sense of patients account through interpretative activity Elicit key themes

IMPLICATIONS OF STUDY Identify common themes Highlight issues which commonly impact on patients lives Expand our knowledge and understanding Focus our care Guide us in the introduction of beneficial palliative interventions Future research

THE EXPERIENCE OF LIVING WITH BRAIN METASTASES “Well the secondaries in the brain I think uh, it was much more of a shock and consequently my perspective has shifted 360 degrees, and now I don’t worry about stupid things, I don’t worry about money, I don’t worry about you know… just little silly things. I can be sitting in the garden having had my treatment and just… I know it sounds quite corny really… but you just appreciate birds singing, how lovely the garden is and you suddenly realise that you are actually living your life, you are not just existing, so I suppose in the positives, it’s given me my life back, in a way, perversely, because it is so serious”. Janet, 47 breast cancer with brain metastases