Change in the Health-Related Quality of Life of Multiple Sclerosis Patients over 5 Years

Abstract

This study examined whether multiple sclerosis (MS) patients (N = 3779) experience change in their perceived health-related quality of life (HRQOL) over a 5-year period, and investigated baseline factors that may be related to change in HRQOL. Data from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry were used to address the study's research questions. Results for the physical and mental component scores of the 12-item Short Form Health Status Survey, version 2 (SF-12v2), indicated that most of the MS sample experienced no significant changes over a 5-year period. However, 40% and 36% of the sample experienced clinically significant declines in their physical and mental HRQOL, respectively, over the 5-year period. After controlling for baseline scores, having a lower education, having greater duration since disease diagnosis, not being employed, having a lower income, not receiving a disease-modifying therapy, and taking a greater number of prescription medications were significantly associated with a clinically significant decline in physical HRQOL. After controlling for baseline scores, not being married/partnered, experiencing a greater number of relapses, not being employed, having a lower income, and taking a greater number of prescription medications were significantly associated with a clinically significant decline in mental HRQOL. Overall, most of the MS sample remained stable in their HRQOL over time. However, approximately four out of every ten patients experienced a clinically important decline in their HRQOL. While the association was statistically significant, the sociodemographic and disease-related factors linked with decline did not strongly predict decline over a 5-year period. Int J MS Care. 2013;15:46-53.

Quality of life among injectable and oral disease-modifying therapy users in the Pacific Northwest Multiple Sclerosis Registry

“…The PDDS is an ordinal questionnaire that allows the participant to self-classify their level of disability on a scale of 0 to 8, with 8 being the most disabled. For this analysis, PDDS at Time 2 was categorized as none or mild disability (0-1), moderate disability [2][3][4], or moderate to severe disability [5][6][7][8].…”

“…If a stayer reported to be on an injectable for several surveys, the Time 1 and Time 2 surveys could be any two of their surveys as long as they met the inclusion criteria. For matching, PDDS at Time 1 was categorized as no or mild disability (0-1) or moderate to severe [2][3][4][5][6][7][8]. The moderate [2][3][4] and moderate to severe [5][6][7][8] groups were combined due to the smaller number of participants in these groups.…”

“…For many people with MS, QoL declines as the disease progresses and can be a significant burden [4]. Previous studies have found that physical and psychological QoL are influenced by progression of disease, level of disability, socio-economic factors, lifestyle choices, and DMT usage [4][5][6]. Few studies have examined patient reported QoL outcomes in those who have switched to oral medications from injectable therapies; existing studies assessing QoL among users of various DMTs have showed varying results.…”

High treatment adherence, satisfaction, motivation, and health-related quality of life with fingolimod in patients with relapsing-remitting multiple sclerosis – results from a 24-month, multicenter, open-label Danish study

“…In accordance with the high adherence levels, a high treatment satisfaction with fingolimod, reflected by high TSQM-9 scores, was observed throughout the study with the highest TSQM-9 scores seen for the convenience domain (ranging from 94.51 to 95.78). Furthermore, high mean SF-12 physical and mental component summary scores, comparable to those for the general population in the United States, 30 were observed throughout the study indicating a high self-reported health-related QoL of the fingolimod-treated patients. In addition, results from the TSRQ and HCCQ indicated that patients were predominantly self-determined (as compared to being controlled) in their form of motivation for taking their medication and that they mainly felt that their health care provider used an autonomy supportive approach when meeting them.…”

“…The physical and mental component summary scores were compared with US norm-based scores, with scores >50 indicating better health. 30 …”