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The patient voice

Learning from patients

As with any condition, patients with lived experience of herpes zoster (shingles) can make an invaluable contribution to the understanding of its impact. The words patients use to describe their experience of shingles reveal the distressing nature of the condition:1,2
An illustration of a word cloud depicting different adjectives patients use to describe their pain, including scary, horrible, stabbing, painful, burning and excruciating.

Broader impacts on quality of life

Patients report that shingles and its complications can have a wide-ranging impact on many aspects of their quality of life.2,3,4,5
 
The importance of pain:
  • The pain associated with shingles and post-herpetic neuralgia (PHN) can be prolonged, upsetting and excruciating, with profound impacts on patients and their family members6
  • More than 70% of patients with PHN experience tactile allodynia (disabling pain from stimuli that are not normally painful, such as the touch of clothing or a light breeze across the skin), which is usually considered the most distressing and debilitating symptom4
  • The more severe the shingles-associated pain, the greater the negative impact on quality of life4
Comparisons with other conditions:
  • The impact of shingles on quality of life during the acute phase of the disease has been likened to that seen with conditions such as congestive heart failure, diabetes mellitus, myocardial infarction and clinical depression4

Shingles and PHN can impact quality of life in many ways:

  • Physical impacts2,4,5,7

    • Fatigue
    • Anorexia
    • Weight loss
    • Reduced mobility
    • Physical inactivity
    • Insomnia

    • Depression and suicidal ideation
    • Anxiety
    • Emotional distress
    • Difficulty concentrating
    • Fear
    • Decreased enjoyment of life

    • Social withdrawal
    • Isolation
    • Fewer social gatherings
    • Loss of independence
    • Change in social role

  • In a survey study of 153 individuals, around two thirds reported some impact of shingles on activities of daily living.8 Pain from shingles may impact activities of daily living for weeks after rash onset.9 Activities of daily living that can be impacted by shingles or the associated pain include:8,9

    • Dressing
    • Bathing
    • Eating and cooking
    • Mobility and travelling
    • Housework
    • Shopping
    • Hobbies
    • Work and career

Patients with PHN can have diminished quality of life for years after experiencing shingles10

References

  1. Van Oorschot D et al. A cross-sectional concept elicitation study to understand the impact of herpes zoster on patients' health-related quality of life. Infect Dis Ther 2022;11:501-516.
  2. Harpaz R et al. Prevention of herpes zoster: Recommendations of the Advisory Committee on Immunization Practices (ACIP). MMWR Recomm Rep 2008;57:1-30: quiz CE2-4.
  3. Sollie M et al. Patient-reported quality of life in patients suffering from acute herpes zoster—a systematic review with meta-analysis. Br J Pain 2022;16:404-419.
  4. Johnson RW et al. The impact of herpes zoster and post-herpetic neuralgia on quality-of-life. BMC Med 2010;8:37.
  5. Curran D et al. Impact of herpes zoster and postherpetic neuralgia on the quality of life of Germans aged 50 or above. BMC Infect Dis 2018;18:496.
  6. Harpaz R. How little we know herpes zoster. J Infect Dis 2020;222:708-711.
  7. Díez-Domingo J et al. Economic burden and impact on quality of life of herpes zoster in Spanish adults aged 50 years or older: A prospective cohort study. Adv Ther 2021;38:3325-3341.
  8. Singhal PK et al. Work and productivity loss related to herpes zoster. J Med Econ 2011;14:639-645.
  9. Schmader KE et al. The impact of acute herpes zoster pain and discomfort on functional status and quality of life in older adults. Clin J Pain 2007;23:490-496.
  10. Oster G et al. Pain, medication use, and health-related quality of life in older persons with postherpetic neuralgia: Results from a population-based survey. J Pain 2005;6:356-363.

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July 2024 | NP-GB-HZU-WCNT-240018 (V1.0)