Life on hold: the experience of living with neuromyelitis optica

Abstract

Results suggest NMO is a difficult condition to live with due to the unpredictability of relapses and accrued disability of visual or spinal symptoms occurring with each relapse. Poor vision, reduced mobility, bladder dysfunction and pain affected participants' independence and experience of living with NMO. Participants reported that during relapse and recovery they would "put their life on hold". They identified the importance of periods of stability to enable them to adjust to their condition and therefore aim for "normality" of life that they believed was comparable to their peers. Implications for Rehabilitation Disability due to NMO has a major impact on an individual's life, abilities and identity. Timely treatment of relapse is essential to reduce or prevent disability. Health care professionals need to coordinate care locally and nationally. Multi-disciplinary work is vital to promote adjustment, coping strategies and support for people living with NMO.

Development of a patient‐centred conceptual framework of health‐related quality of life in neuromyelitis optica: a qualitative study

“…The limited epidemiological data suggests an estimated half a million cases worldwide, with 4000 cases in the United States and a prevalence rate of 7.2–19.6 per million in the United Kingdom, affecting approximately 700 people. In comparison to the approximately 345 000 people living with epilepsy in the UK, NMO is a very rare neurological condition, with accompanying difficulties regarding lack of public and professional awareness and knowledge, and potentially negative experiences of health‐care services …”

“…In comparison to the approximately 345 000 people living with epilepsy in the UK, 6 NMO is a very rare neurological condition, with accompanying difficulties regarding lack of public and professional awareness and knowledge, and potentially negative experiences of healthcare services. 7,8 NMO is characterized by periodic exacerbations of symptoms (relapses) and significant disability that often occurs early in the disease process, compared to a condition with similar clinical features, such as multiple sclerosis. In comparison to other relapsing conditions such as multiple sclerosis 9 or rheumatoid arthritis 10 NMO relapses typically have a rapid onset and cause more severe residual neurological disability.…”

Obesity prevention in corticosteroid‐treated patients: Use and effectiveness of strategies for weight management

“…Evidence to support effective use of clinical interventions to address drug‐induced weight gain is important for improving patient medication adherence and long‐term health outcomes. Qualitative research has described patients' experiences of weight gain leading to their non‐adherence to corticosteroid treatment . Clinical approaches to address weight gain in patients on corticosteroids may be more effective when the interventions are more complex and include strategies for sleep deprivation which can increase a person's risk of having obesity, and insomnia can also be steroid‐induced .…”

“…Qualitative research has described patients' experiences of weight gain leading to their non-adherence to corticosteroid treatment. 11,33 Clinical approaches to address weight gain in patients on corticosteroids may be more effective when the interventions are more complex and include strategies for sleep deprivation which can increase a person's risk of having obesity, and insomnia can also be steroid-induced. 34 Future work would benefit from improved methodology of study design since the poor-quality pilot RCTs were biased from the use of an open-label intervention and thus lack blinding of participants and observers.…”

Bevacizumab is safe in acute relapses of neuromyelitis optica

“…The standard of care for management of acute relapses of NMO is 5 days of high-dose intravenous corticosteroids, but most patients are still left with residual disability after each attack despite early and aggressive immunosuppression. 9 The present trial was designed to test the safety of adding bevacizumab to prevent central nervous system damage during acute NMO relapses. As a secondary outcome measure, disability scores were compared before the relapse, at the peak of the attack, at discharge from the hospital and on 90-day follow up in the clinic.…”