Survey to identify the extent and severity of MS impairments and health care needs

Only one published survey of MS-related impairments has been conducted in Australia. This survey identified walking difficulty, fatigue and altered sensory symptoms as the three most prevalent bodily functions affecting people with MS (6). However, this survey did not capture the relative adverse effects of each impairment, or the degree to which health services were available to address them. We now propose to conduct a definitive, large survey using the MSL registry of the 12,000 people with MS living in the ACT, NSW, Victoria and Tasmania.

Study aims:

  • To understand how people with MS perceive their disease-related impairments.
  • To determine whether these impairments are addressed by health care professionals.
  • To identify current practices of referring people with MS to physiotherapy/​exercise programs.
  • To determine the level of engagement in these services by people with MS and whether services provided by MSL meet/​do not meet clients’ expectations.

The survey will be conducted online, using the secure RedCap platform, with ancillary mail-based surveys conducted as required. It will include Likert scales that assess impairments with respect to walking, balance, fatigue, spasticity, weakness in the arms and legs, reduced sensation, pain, foot drop, falls, depression and anxiety, incontinence, sexual dysfunction, speech problems, difficulties with swallowing, heat sensitivity, reduced dexterity, visual impairments, forgetfulness and difficulties concentrating.