Quality of life among individuals diagnosed with an acoustic neuroma:

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• Quality of life among individuals diagnosed with
  an acoustic neuroma
• A focus group study

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Research Team

• Ms Joanne Brooker, PhD CandidateSchool of
  Psychology, Psychiatry Psychological Medicine,
  Monash University
• Dr Sue Burney, Supervisor School of Psychology,
  Psychiatry Psychological Medicine, Monash
  University
• Ms Jane Fletcher, Supervisor Cancer Council of
  Victoria
• Dr Michael Dally, Supervisor William Buckland
  Radiotherapy Centre, The Alfred

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Acknowledgements

• Thank you to the Acoustic Neuroma Association of
  Australasia (ANAA) Inc. for assistance with
  recruitment of focus group participants
• The project was funded by
• ANAA Inc.
• Alfred Hospital
• Monash University

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What is an acoustic neuroma (AN)?

• A benign tumour
• Develops on the vestibulocochlear nerve (8th
  cranial nerve) which connects the brain to the
  inner ear
• Approx 250 - 300 people are diagnosed each year
  in Australia (Acoustic Neuroma Association NSW,
  2005).

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Symptoms Side-Effects of Treatment

• Before and/or after treatment
• Unilateral hearing loss partial or complete
• Balance disturbance eg. veering, falling over
• Dizziness
• Facial paralysis speech eating problems
• Facial numbness and pain (tender numbness)
• Eye problems (dryness, double vision)
• Tinnitus
• Headaches may be severe
• Taste disturbance

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Treatment Options

• Observation serial MRIs
• Surgery
• Radiation
• stereotactic radiosurgery (SRS)
• single dosage
• fractionated stereotactic radiotherapy (SRT)
• dosage administered over multiple sessions

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Quality of life (QoL) definition

• No consensus in the scientific literature
• Multiple domains (Felce Perry, 1995) including
• Physical wellbeing
• Emotional wellbeing
• Social wellbeing
• Material wellbeing
• Development activity
• Prompts for current study
• General, physical, emotional, and social
  wellbeing and functional status

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Why examine quality of life?
Mortality rate from treatment is very low (1)
Research has focused on clinically-assessed
physical symptoms
May live for many years with a range of residual
symptoms
Individuals can receive optimal medical care and
psychosocial support
Important to understand factors that impact on QoL
Provide limited account of impact of AN on
persons life
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Prior Research

• Limited number of studies have used
• Standardised measures such as the SF36 and
  Glasgow Benefit Inventory
• Ad hoc questionnaires
• No previous focus group study
• No Australian QoL studies

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Research Questions

• To what extent does an acoustic neuroma and its
  treatment impact QoL? ? Todays focus
• Which biopsychosocial factors influence QoL among
  individuals diagnosed with an acoustic neuroma?

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Project design 3 sequential studies
Phase 1 Focus Group Study
Phase 2 Retrospective study
Literature Review
Phase 3 Prospective study
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Focus Group Study

• Participants
• Inclusion criteria
• 18 to 75 years old
• Diagnosed or treated within last 5 years
• English speaking
• N 21 participants
• Recruited via The Alfred and the ANAA Inc.
• Response rate 29 (21 of 73 patients invited)

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Focus Group Method

• Procedure
• 4 focus group sessions conducted in Nov / Dec
  2005
• Independent facilitator raised a number of
  questions to identify
• How QoL had been impacted by the acoustic neuroma
  and/or its treatment

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Focus Group Prompts

• What are the breadth of things that get affected
  in your life?
• How does the AN affect your daily life?
• How has the AN affected your moods and emotions?
• What's the most difficult thing to deal with?
• What are the things that bother you the least?
• Have any things changed in the way they affect
  you over time?
• How do you feel about your bodies and how well
  theyre functioning for you?

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Focus Group Data

• Participant details
• Mean age 55 years (range 29 73 years)
• Gender 12 males, 9 females
• Relationship 18 living with partner, 1 in
  relationship but not cohabitating, 2 not in
  relationship
• Education 6 completed secondary, 9
  undergraduate tertiary, 4 postgraduate tertiary,
  2 TAFE
• Treatment 8 surgery, 4 SRS, 5 SRT, 1
  observation, 2 surgery SRS, 1 surgery SRT

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Current Physical Symptoms
Mean time since diagnosis 3.5 years (range 1
to 11 years)
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Focus Group Themes

• A diverse range of experiences
• Broad themes included physical wellbeing,
  psychological wellbeing, social wellbeing and
  functional status

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Hearing Loss

• Emerged as the most troublesome symptom
• Having to explain an invisible disability
• Some people think they are being deliberately
  ignored
• The need to concentrate caused fatigue
• Lack of directional hearing
• Seating arrangements were an important issue
• Difficult to participate in social gatherings due
  to background noise

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Balance Disturbance

• Loss of activities for some participants
• bushwalking, dancing, ten pin bowling
• Caused problems with
• losing balance when turning head quickly
• driving
• walking down slopes, on uneven ground and in poor
  light
• Contributes to fatigue because of the need to
  concentrate when walking

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Pain

• Severe headaches following surgery for two
  participants
• Constant feeling of pressure on side of head for
  one participant
• another participant was incapacitated by severe
  pain for 11 months following surgery
• Eye pain associated with headaches

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Mood

• Depression for three individuals after surgery,
  attributed to
• Emotional let-down after initial euphoria of
  conquering a serious illness
• Social isolation resulting from hearing loss
• Severe, ongoing headaches
• Mild anxiety in specific situations
• E.g., Noise, crowds lighting in large shopping
  centres were overwhelming because of hearing loss
  and balance disturbance

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Uncertainty

• Three people who had undergone irradiation
  expressed uncertainty about whether the tumour
  had responded to treatment

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Anger and Frustration

• Four participants who expressed anger about the
  impact of symptoms on QoL were among those whose
  life had been most disrupted
• Several participants expressed frustration
  associated with
• Inability to engage in daily activities, hobbies
  and group social interactions
• Lack of understanding from other people

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Facial Body Image

• Of the 3 participants with facial palsy
• one was satisfied with facial appearance
• two expressed some dissatisfaction and
  self-consciousness about their appearance.

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Confidence

• A few participants felt less confident in social
  settings because of difficulties hearing
  conversations

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Gratitude, Relief and Perspective

• Sense of relief that tumour was benign
  treatable
• Many patients expressed a sense of gratitude in
  cases where treatment outcome was perceived as
  good
• For several participants the acoustic neuroma
  experience had broadened their perspective on life

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Social Wellbeing

• For vast majority, social interactions were
  negatively impacted by hearing impairment
• Hearing impairment and balance disturbance also
  affected social wellbeing because of loss of
  hobbies
• e.g., sport, concerts, dancing

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Impact on careers

• Impact on career
• 12 of 17 participants employed at diagnosis were
  able to successfully continue their current jobs
  shortly after treatment
• 3 participants were forced to retire because of
  physical symptoms
• One chose to retire early from teaching
• One unable to work for 11 months following
  surgery
• Communicating at business meetings was more
  difficult

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Limitations strengths of focus group data

• Only one participant in the treatment category of
  observation
• Self-selecting sample
• May not be representative
• Highly educated
• Articulate sample
• Diverse range of experiences and ages
• First focus group study

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Project Status

• Phase 2 (retrospective study) data collection
  completed in Victoria and NSW
• Phase 3 (prospective study) data collection
  begins in VIC, NSW, QLD, SA, Canada in 2008

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