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

1. Quality of life among individuals diagnosed with an acoustic neuroma: A focus group study

2. 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

3. 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

4. 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).

5. 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

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

7. 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

8. 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 person’s life

9. 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

10. Research Questions • To what extent does an acoustic neuroma and its treatment impact QoL?  Today’s focus • Which biopsychosocial factors influence QoL among individuals diagnosed with an acoustic neuroma?

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

12. 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)

13. 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

14. 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 they’re functioning for you?

15. 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

16. Current Physical Symptoms Mean time since diagnosis = 3.5 years (range = 1 to 11 years)

17. Focus Group Themes • A diverse range of experiences • Broad themes included: physical wellbeing, psychological wellbeing, social wellbeing and functional status

18. 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

19. 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

20. 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

21. 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

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

23. 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

24. 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.

25. Confidence • A few participants felt less confident in social settings because of difficulties hearing conversations:

26. 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

27. 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

28. 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

29. 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

30. 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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