In an observational study we assessed in PwMS the effect of a social cognitive wellness program with the participation of support partners on self-efficacy, participation and autonomy (primary outcomes), HRQoL, anxiety, depression and fatigue (secondary outcomes). In the total group a significant but moderate increase in mental HRQoL was seen at 1, 3 and 6 months, whereas improvements in the primary outcomes were absent. However, in the RR group the MSSE-Control score had significantly increased by 24.8% (mean) at 6 months, and the IPA-Problems score decreased by −8.4% (mean) at 3 months. Moreover, in RR patients the mental and physical HRQoL had increased at 6 months by 21.4% and 12.7% resp., with no such changes in the progressive group. These discrepancies between RR and progressive patients were mirrored by the results of the analyses according to degree of disability. Overall, our findings indicate that 3 to 6 months after SCDP, persons with RRMS or low disability may experience less limitations with respect to participation and autonomy, an improved confidence with managing symptoms and coping with demands of their disease (self-efficacy-control), and improved mental and physical HRQoL. Notably, the improved mental HRQoL (mean increase MSQoL-54 Mental score 22.3%) at 6 months is likely related to the improved self-efficacy-control (mean increase MSSES-Control score 24.8%), since in chronic conditions the relationship between self-efficacy and psychological well-being has been convincingly documented [6, 3]. Moreover, the degree to which both these measures had increased (>20%) suggest that the observed changes are clinically relevant and do qualify as improvements.
Self-efficacy, being the belief in one’s ability to produce outcomes one wants [1, 3], is a strong predictor of health behavior, and it can be instrumental in modulating the experience of chronic illness [18, 3]. Various interventions have been developed to increase self-efficacy with the goal of improving chronic disease outcomes [3, 19]. Some interventions have focused on a single behavior such as exercise or stress management, while others have taken a more comprehensive “lifestyle” approach [20, 21]. In the U.S.A. a concentrated 4-day interdisciplinary educational wellness program has been developed for PwMS . For conceptual and practical reasons we modified this program. We emphasized the social cognitive components and therefore only investigated couples of PwMS and their support partners. In addition, for reason of efficiency and to save time for the participants, notably the support partners, we condensed the program to 3 days by reducing the educational component. The beneficial changes after SCDP in the RR group are in line with the effects observed by Ng et al. after the 4-day original CDP . These authors observed in MS patients (N = 98) improvements in self-efficacy control (MSSES-Control) and HRQoL (Short Form 36-Items [SF-36]) at 1, 3 and 6 months ; comparisons between RR and progressive PwMS were not reported . Importantly and in contrast to our findings, improvements in the study by Ng et al. were independent from disability (EDSS). A comparison of their subjects’ disability level (median EDSS 3.5) with that in our RR (mean EDSS 3.1) and progressive (mean EDSS 5.5) groups, suggests that their participants were relatively mildly disabled and most likely mainly RR.
The negative findings in the progressive group may relate to several factors. The original CDP takes 4 days and consists of the following six components: group-based individual assessments (general health, gait, spirometry, visual acuity, muscle function, balance, coordination, fitness, exercise); group workshops (stretching, cognition, fatigue, Swiss ball, mindful motivation); group seminars/lectures (MS facts and treatment, MS research, sexual function, communication, psychological aspects of MS, nutrition, exercise, stress management, complementary and alternative medicine, goal setting); group optional activities (walking, stretching/yoga/Pilates); individual consultations (neurological, psychological, program summary, goal setting); and individual optional consultations (program integration and skill building, speech language pathologist, occupational therapist, aqua therapist, nurse practitioner, physiatrist, dietician, urologist) . It may be that the social cognitive approach, the reduced educational component, or the condensation to 3 days have rendered our SCDP less effective in persons with progressive MS. On the other hand, the relatively small numbers of participants in our study may have prevented the detection of small beneficial effects.
Depression and anxiety are common in PwMS. People’s mood can be significantly affected by the perception of their disability , and in a recent cohort study in PwMS it was shown that experiencing depression significantly predicted anxiety . In our study we only observed in the RR group a tendency to a temporary decrease in the depression score (−22.6%) at 1 month. Changes on the longer term were not seen. Neither was the level of fatigue (MFIS-5) affected by SCDP.
With greater loss of mobility, the ability to perform activities of daily living decreases and the dependence upon the assistance of others increases [23, 24]. In the RR group the MS-related limitations, and the extent to which these limitations were experienced as problematic, were decreased at 3 months, but not at 6 months. This finding suggests that the effect of a single SCDP intervention may be temporary, and that follow-up sessions should be considered.
Given the uncontrolled design of the study we cannot infer that SCDP caused the changes that we observed. Yet, a placebo effect and a regression to the mean seem insufficient explanations for the improvements at 3 or 6 months, as virtually no changes were seen in persons with progressive MS. Another limitation of our study is the relatively small number of PwMS studied.