Quality of life in vestibular schwannoma

Quality of life in vestibular schwannoma

The PANQOL in vestibular schwannoma

Vestibular schwannoma, or acoustic neuroma, is a benign tumour that grows along the nerve responsible for balance and hearing. Patients with this condition often experience various symptoms that can significantly impact their quality of life. To measure the impact of acoustic neuroma on patients’ lives, Shaffer et al. developed the Penn Acoustic Neuroma Quality of Life (PANQOL) questionnaire in 2010 (1).

The PANQOL questionnaire is considered the most appropriate and only validated vestibular schwannoma questionnaire worldwide. There are 26 questions.  It is a comprehensive tool that assesses multiple aspects of patients’ quality of life, including hearing, balance, facial symptoms, anxiety, energy, pain, and general health. By evaluating these seven domains, the PANQOL questionnaire provides a holistic view of how acoustic neuroma affects patients’ daily functioning and well-being.

The seven domains of the PANQOL

The seven domains in vestibular schwannoma are:

  • Hearing
  • Balance
  • Facial symptoms
  • Anxiety
  • Energy levels
  • Pain
  • General Health

Hearing in vestibular schwannoma

Hearing is one of the most common symptoms associated with vestibular schwannoma, as the tumour grows near the auditory nerve. Patients may experience hearing loss, tinnitus, or difficulty understanding speech. The PANQOL questionnaire assesses the impact of these hearing-related symptoms on patients’ quality of life, including their ability to communicate effectively and engage in social activities.

Balance in vestibular schwannoma

Balance issues are another common symptom of vestibular schwannoma, as the tumour can disrupt the vestibular nerve responsible for balance and coordination. The PANQOL questionnaire evaluates how balance problems affect patients’ mobility, independence, and overall quality of life.

Facial symptoms in vestibular schwannoma

Facial symptoms, such as facial weakness or numbness, can also occur in patients with vestibular schwannoma. The PANQOL questionnaire assesses the impact of these facial symptoms on patients’ self-image, confidence, and emotional well-being.

Anxiety in vestibular schwannoma

Anxiety is a common psychological consequence of living with a chronic condition like vestibular schwannoma. Patients may experience fear, worry, or stress related to the tumour, its treatment, or potential complications. The PANQOL questionnaire measures the impact of anxiety on patients’ mental health, emotional stability, and overall quality of life.

Energy levels in vestibular schwannoma

Vestibular schwannoma can significantly impact energy levels, as patients may experience fatigue, lethargy, or reduced stamina. The PANQOL questionnaire assesses the impact of energy levels on patients’ ability to perform daily activities, engage in hobbies, and maintain social relationships.

Pain in vestibular schwannoma

Pain is another common symptom associated with vestibular schwannoma, as the tumour can cause headaches, facial pain, or neck discomfort. The PANQOL questionnaire evaluates the impact of pain on patients’ physical functioning, emotional well-being, and overall quality of life.

General health in vestibular schwannoma

General health encompasses many physical, emotional, and social factors contributing to patients’ well-being. The PANQOL questionnaire assesses patients’ perceptions of their health status, quality of life, and ability to cope with the challenges of living with vestibular schwannoma.

The minimally clinically importance difference (MCID) in vestibular schwannoma

The minimally clinically important difference (MCID) in vestibular schwannoma is the minimal change in a patient’s condition that is considered to be meaningful or significant by clinicians and patients (2,3). This measurement can help healthcare providers determine if a particular treatment or intervention is efficacious in improving symptoms or quality of life for individuals with vestibular schwannoma.

For example, in a study evaluating the effectiveness of a new medication for vestibular schwannoma, researchers may look for a change in symptoms or quality of life that meets or exceeds the established MCID to determine if the treatment is having a meaningful impact on the patient’s well-being. By using MCID as a benchmark, healthcare providers can better assess the effectiveness of treatments and make informed decisions about patient care.

Short-term quality of life vs long-term quality of life in vestibular schwannoma

Short-term (1-5 years) quality of life outcomes differ among patients undergoing different treatment modalities for vestibular schwannoma, such as wait and scan, microsurgery, or stereotactic radiotherapy. Some patients may experience temporary improvements or setbacks in their quality of life following treatment, depending on the nature of their symptoms and the efficacy of the intervention.goals.

However, in the long term (6-10 years), quality of life outcomes tend to equalize and stay stable among patients undergoing different treatment modalities, suggesting that all options can ultimately lead to similar outcomes regarding patients’ well-being and functioning (4). This finding highlights the importance of personalized treatment decision-making based on individual patient preferences, values, and

Factors that impact the quality of life in vestibular schwannoma

A patient’s quality of life is affected by a vestibular schwannoma  regardless of the type of treatment received. The impact of a vestibular schwannoma diagnosis on quality of life is more significant than the actual treatment received (5).

Ongoing dizziness and headache, particularly with large tumour size, contribute to a lower quality of life. Quality of life appears to be most affected immediately following diagnosis. (6,7,8,9)

Various management strategies for vestibular schwannoma- including surgery, radiotherapy, and active surveillance – have similar long-term quality of life (QoL) outcomes. However, there is significant variability among individuals. Female sex, being on a disability pension, and requiring additional treatment after initial therapy failure are factors linked to a reduced long-term QOL in vestibular schwannoma patients.

References

1. Shaffer BT, Cohen MS, Bigelow DC, Ruckenstein MJ. Validation of a disease-specific quality-of-life instrument for acoustic neuroma: the Penn Acoustic Neuroma Quality-of-Life Scale. Laryngoscope. 2010 Aug;120(8):1646-54. doi: 10.1002/lary.20988. PMID: 20641085.

2. Kerezoudis P, Yost KJ, Tombers NM, Celda MP, Carlson ML, Link MJ. Defining the Minimal Clinically Important Difference for Patients With Vestibular Schwannoma: Are all Quality-of-Life Scores Significant? Neurosurgery. 2019 Dec 1;85(6):779-785. doi: 10.1093/neuros/nyy467. PMID: 30395303.

3. Carlson ML, Tveiten ØV, Yost KJ, Lohse CM, Lund-Johansen M, Link MJ. The Minimal Clinically Important Difference in Vestibular Schwannoma Quality-of-Life Assessment: An Important Step beyond P < .05. Otolaryngol Head Neck Surg. 2015 Aug;153(2):202-8. doi: 10.1177/0194599815585508. Epub 2015 Jun 2. PMID: 26038393.

4. Robinett ZN, Walz PC, Miles-Markley B, Moberly AC, Welling DB. Comparison of Long-term Quality-of-Life Outcomes in Vestibular Schwannoma Patients. Otolaryngol Head Neck Surg. 2014 Jun;150(6):1024-32. doi: 10.1177/0194599814524531. Epub 2014 Mar 4. PMID: 24596235.

5. Neve OM, Jansen JC, Koot RW, Ridder M, Paul G van Benthem P, Stiggelbout AM, Hensen EF. Long-Term Quality of Life of Vestibular Schwannoma Patients: A Longitudinal Analysis. Otolaryngol Head Neck Surg. 2023 Feb;168(2):210-217. doi: 10.1177/01945998221088565. PMID: 35349360.

6.  Carlson ML, Tveiten OV, Driscoll CL, Goplen FK, Neff BA, Pollock BE, Tombers NM, Castner ML, Finnkirk MK, Myrseth E, Pedersen PH, Lund-Johansen M, Link MJ. Long-term quality of life in patients with vestibular schwannoma: an international multicenter cross-sectional study comparing microsurgery, stereotactic radiosurgery, observation, and nontumor controls. J Neurosurg. 2015 Apr;122(4):833-42. doi: 10.3171/2014.11.JNS14594. Epub 2015 Jan 2. PMID: 25555165.

7. Carlson ML, Tombers NM, Kerezoudis P, Celda MP, Lohse CM, Link MJ. Quality of Life Within the First 6 Months of Vestibular Schwannoma Diagnosis With Implications for Patient Counseling. Otol Neurotol. 2018 Dec;39(10):e1129-e1136. doi: 10.1097/MAO.0000000000001999. PMID: 30239440.

8. Lodder WL, van der Laan BFAM, Lesser TH, Leong SC. The impact of acoustic neuroma on long-term quality-of-life outcomes in the United Kingdom. Eur Arch Otorhinolaryngol. 2018 Mar;275(3):709-717. doi: 10.1007/s00405-018-4864-0. Epub 2018 Jan 12. PMID: 29330600.

9.  Robinett ZN, Walz PC, Miles-Markley B, Moberly AC, Welling DB. Comparison of Long-term Quality-of-Life Outcomes in Vestibular Schwannoma Patients. Otolaryngol Head Neck Surg. 2014 Jun;150(6):1024-32. doi: 10.1177/0194599814524531. Epub 2014 Mar 4. PMID: 24596235.