A longitudinal survey of self-assessed health trends in a community cohort of people with multiple sclerosis and their significant others

Ten-year follow-up of health-related quality of life among ambulatory persons with multiple sclerosis at baseline

“…To our knowledge, deterioration on the pain scale has not been reported in previous epidemiological or clinical studies using the RAND-36 or MSQOL-54 instruments [20][21][22][23] although the presence of chronic pain among PwMS has been noted [36][37]. Our study indicated deterioration in sexual activity on the 15D and the MSQOL-54 as well as in satisfaction with 9 sexual functioning on the MSQOL-54.…”

“…This discrepancy between our results and those reported by Giordano et al [23] may be partly explained by the fact that in the Giordano et al [23] study 19% of the participants were non-ambulatory at baseline. In addition, another epidemiological study (N=205), with 83% of the ambulatory participants at the baseline and a disease duration of 17 years, found a deterioration on the MSQOL-54 physical functioning scale at the five-year follow-up [21]. Clinic-based studies with follow-ups of less than six years also reported deterioration on the MSQOL-54 and SF-36 physical functioning scales [20,22].…”

“…Over the last decade, most MS-related HRQoL studies have used rather short follow-ups [14,[16][17][18][19][20][21][22]. Only one epidemiological study with a follow-up period of more than ten years has been published [23].…”

“…Only one epidemiological study with a follow-up period of more than ten years has been published [23]. Most studies have used instruments that are either generic, such as the Short Form (36) Health Survey (SF-36) [17][18][20][21], or diagnosis-specific, such as the Multiple Sclerosis Quality of Life-54 (MSQOL-54) [14,19,[21][22][23]. Moreover, little is known about the possible factors contributing to changes in HRQoL among PwMS [22].…”

“…Deterioration has been observed on the physically-oriented scales of the SF-36 (i.e., physical functioning, role-physical), and MSQOL-54 (i.e., physical functioning, role-physical, and sexual functioning) questionnaires [17][18][19]21]. Some studies, however, have also reported improved scores on HRQoL scales oriented to mental functioning over time among PwMS [14,21,23]. To our knowledge, no previous studies have used both generic and diagnosis-specific HRQoL instruments in the same population-based and longterm follow-up study among PwMS.…”