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

Research Team

– Ms Joanne Brooker, PhD Candidate School 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

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

What is an acoustic neuroma (AN)?

• • •

A benign tumour Develops on the vestibulocochlear nerve (8 th 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).

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

Treatment Options • • •

Observation – serial MRIs Surgery

–

Radiation

stereotactic radiosurgery (SRS) > single dosage – fractionated stereotactic radiotherapy (SRT) > dosage administered over multiple sessions

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

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 Provide limited account of impact of AN on person’s life Important to understand factors that impact on QoL Individuals can receive optimal medical care and psychosocial support

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

Research Questions

1. To what extent does an acoustic neuroma and its treatment impact QoL?



Today’s focus 2. Which biopsychosocial factors influence QoL among individuals diagnosed with an acoustic neuroma?

Project design – 3 sequential studies

Literature Review

Phase 1:

Focus Group Study

Phase 2:

Retrospective study

Phase 3:

Prospective study

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)

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

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?

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

Current Physical Symptoms

Symptoms

Unilateral Hearing Impairment Balance Disturbance Fatigue Tinnitus Eye Problems Facial Palsy Facial Numbness Headaches / Pain Dizziness Facial Spasm

No. of individuals who reported symptom

21 16 10 3 2 9 6 3 3 1 Mean time since diagnosis = 3.5 years (range = 1 to 11 years)

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

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

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

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

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

Uncertainty

•

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

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

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.

Confidence •

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

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

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

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

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

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

References

Acoustic Neuroma Association NSW (2005). Australian Acoustic Neuroma Statistics. (n.d.). Retrieved June 30, 2005, from http://www2.tpgi.com.au/users/bcrowe/statistics.htm

Bowling, A. (2005). Measuring health: A review of quality of life measurement scales. Maidenhead, Berks: Open University Press.

Briggs, R. J., Fabinyi, G., & Kaye, A. H. ( 2000). Current management of acoustic neuromas: Review of surgical approaches and outcomes. Journal of Clinical Neuroscience, 7(6), 521-526.

Da Cruz, M. J., Moffat, D. A., & Hardy, D. G. (2000). Postoperative quality of life in vestibular schwannoma patients measured by the SF36 Health Questionnaire. Laryngoscope, 110(1), 151-155.

Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51-74.

Glavassevich, M., Thomas, S., & Galloway, S. C. (1991). An educational program to improve quality of life for individuals with acoustic neuroma. Journal of Neuroscience Nursing, 23(4), 231-234.

Kondziolka, D., Lunsford, L. D., & Flickinger, J. C. (2004). Acoustic neuroma radiosurgery. Origins, contemporary use and future expectations. Neuro-Chirurgie, 50, 427-435.

Myrseth, E., Moller, P., Wentzel-Larsen, T., Goplen, F., & Lund-Johansen, M. (2006). Untreated vestibular schwannomas: Vertigo is a powerful predictor for health-related quality of life. Neurosurgery, 59(1), 67-76.

Myrseth, E., Pedersen, P. H., Moller, P., & Lund-Johansen, M. (2007). Treatment of vestibular schwannomas. Why, when and how? Acta Neurochirurgica, 149(7), 647-60.

Nikolopoulos, T. P., Johnson, I., & O'Donoghue, G. M. (1998). Quality of life after acoustic neuroma surgery. Laryngoscope, 108(9), 1382-1385.

Parving, A., Tos, M., Thomsen, J., Moller, H., & Buchwald, C. (1992). Some aspects of life quality after surgery for acoustic neuroma. Archives of Otolaryngology -- Head & Neck Surgery, 118(10), 1061-1064.

Pritchard, C., Clapham, L, Davis, A., Lang, D. A., & Neil-Dwyer, G. (2004). Psycho-socio-economic outcomes in acoustic neuroma patients and their carers related to tumour size. Clinical Otolaryngology & Allied Sciences, 29(4), 324-330.

Propp, J. M., McCarthy, B. J., Davis, F. G., & Preston-Martin, S. (2006). Descriptive epidemiology of vestibular schwannomas. Neuro- Oncology, 8, 1-11.

Robinson, K., Gatehouse, S., & Browning, G. G. (1996). Measuring patient benefit from otorhinolaryngological surgery and therapy. Annals of Otology, Rhinology & Laryngology, 105(6), 415-422.

Ryzenman, J. M., Pensak, M. L., & Tew, J. M. (2005). Headache: A quality of life analysis in a cohort of 1,657 patients undergoing acoustic neuroma surgery, results from the Acoustic Neuroma Association. Laryngoscope, 115(4), 703-711.

Sandooram, D., Grunfeld, E. A., McKinney, C., & Gleeson, M. J. (2004). Quality of life following microsurgery, radiosurgery and conservative management for unilateral vestibular schwannoma. Clinical Otolaryngology & Allied Sciences, 29(6), 521-627.

Watanabe, K., Saito, N., Taniguchi, M., Kirino, T., & Sasaki, T. (2003). Analysis of taste disturbance before and after surgery in patients with vestibular schwannoma. Journal of Neurosurgery, 99(6), 999-1003.

Wiegand, D. A., Ojemann, R. G., & Fickel, V. (1996). Surgical treatment of acoustic neuroma (vestibular schwannoma) in the United States: Report from the Acoustic Neuroma Registry. Laryngoscope, 106(1), 58-66.