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

2. 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

3. 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

4. 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

5. 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.

6. 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.

7. 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)

8. 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

9. 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

10. 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

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

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

13. 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

14. 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

15. 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

16. 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