Glatiramer acetate treatment persistence - but not adherence - in multiple sclerosis patients is predicted by health-related quality of life and self-efficacy: a prospective web-based patient-centred study (CAIR study)

Abstract

BackgroundIn patients with relapsing remitting multiple sclerosis (RRMS) the persistence of and adherence to disease modifying drug (DMD) treatment is inadequate. To take individualised measures there is a need to identify patients with a high risk of non-persistence or non-adherence. As patient-related factors have a major influence on persistence and adherence, we investigated whether health-related quality of life (HRQoL) and self-efficacy could predict persistence or adherence.MethodsIn a prospective web-based patient-centred study in 203 RRMS patients, starting treatment with glatiramer acatete (GA) 20 mg subcutaneously daily, we measured physical and mental HRQoL (Multiple Sclerosis Quality of Life-54 questionnaire), functional and control self-efficacy (Multiple Sclerosis Self-Efficacy Scale), the 12-month persistence rate and, in persistent patients, the percentage of missed doses. HRQoL and self-efficacy were compared between persistent and non-persistent patients, and between adherent and non-adherent patients. Logistic regression analysis was used to assess whether persistence and adherence were explained by HRQoL and self-efficacy.ResultsPersistent patients had higher baseline physical (mean 58.1 [standard deviation, SD] 16.9) and mental HRQoL (63.8 [16.8]) than non-persistent patients (49.5 [17.6]; 55.9 [20.4]) (P = 0.001; P = 0.003) with no differences between adherent and non-adherent patients (P = 0.46; P = 0.54). Likewise, in persistent patients function (752 [156]) and control self-efficacy (568 [178]) were higher than in non-persistent patients (689 [173]; 491 [192]) (P = 0.009; P = 0.004), but not in adherent vs. non-adherent patients (P = 0.26; P = 0.82). Logistic regression modelling identified physical HRQoL and control self-efficacy as factors that explained persistence. Based on predicted scores from the model, patients were classified into quartiles and the percentage of non-persistent patients per quartile was calculated: non-persistence in the highest quartile was 23.4 vs. 53.2% in the lowest quartile. Risk differentiation with respect to adherence was not possible. Based on these findings we propose a practical work-up scheme to identify patients with a high risk of non-persistence and to identify persistence-related factors.ConclusionsFindings suggest that pre-treatment physical HRQoL and control self-efficacy may identify RRMS patients with a high risk of early discontinuation of injectable DMD treatment. Targeting of high-risk patients may enable the efficient use of persistence-promoting measures.Trial RegistrationNederlands Trial Register code: NTR2432.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-017-0622-z) contains supplementary material, which is available to authorized users.

Health-Related Quality of Life in Patients with Multiple Sclerosis: Impact of Disease-Modifying Drugs

“…The unique contribution of HRQoL assessment to the evaluation of individual patients is illustrated by the fact that a permanent numbness at a fingertip will hardly have a functional effect in a construction worker, but may severely affect the occupational activities of a professional violinist. Recently, it has been reported that the levels of HRQoL and self-efficacy may predict the risk of early treatment discontinuation in patients starting high-frequency GA treatment [ 96 ]. When interpreting HRQoL changes over longer periods, response shift may be a concern as subjective self-reported outcomes may be influenced by adaptation to the illness [ 97 ], even in patients who are not actively experiencing symptoms on a consistent basis [ 98 ].…”

Adherence to fingolimod in multiple sclerosis: an investigator-initiated, prospective, observational, single-center cohort study

“…Moreover, to date numerous predictors of nonadherence have been identified in MS adherence studies, but no easy-to-use screening tool for predicting suboptimal implementation has been developed, whereas recently a proposition has been presented for identifying patients at risk of nonpersistence. 56 Future studies should also consider whether patients’ adherence prior to a DMT switch is predictive of outcome after switching to a further DMT. In this, it will be important to consider the application form (iDMTs, oDMTs, or ivDMTs), that it is not unusual for patients to take a drug holiday around the time of a switch, and that patient recall of prior adherence could be subject to recall bias.…”

Rehabilitation use in multiple sclerosis: Do illness representations matter?

“…Nor are we aware of any studies focusing on the utility of illness representations within the theoretical framework of the CSM in the context of the adherence literature in MS, which could be seen as a construct related to service utilization. However, on a superordinate construct level, evidence suggests that adherence to disease-modifying therapies (DMT) is influenced by patients' attitudes and (adherence) expectations, treatment beliefs such as the perceived benefits of DMT therapy, and self-efficacy (Brandes, Callender, Lathi, & O'Leary, 2009;Jongen, Lemmens, Hoogervorst, & Donders, 2017;Turner, Kivlahan, Sloan, & Haselkorn, 2007;Turner, Roubinov, Atkins, & Haselkorn, 2016;Zwibel, Pardo, Smith, Denney, & Oleen-Burkey, 2011).…”