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Corresponding author at: Mandell Center for Multiple Sclerosis, Mount Sinai Rehabilitation Hospital, Trinity Health Of New England, 490 Blue Hills Avenue, Hartford, CT, 06112, United States.
Affiliations
Mandell Center for Multiple Sclerosis, Mount Sinai Rehabilitation Hospital, Trinity Health Of New England, 490 Blue Hills Avenue, Hartford, CT, 06112, United StatesPsychology Service, VA Connecticut Healthcare System, 950 Campbell Avenue, West Haven, CT, 06516, United StatesDepartment of Neurology, University of Connecticut School of Medicine, 263 Farmington Avenue, Farmington, CT, 06030, United StatesDepartment of Medical Sciences, Frank H. Netter MD School of Medicine at Quinnipiac University, 370 Bassett Road, North Haven, CT 06473, United StatesDepartment of Rehabilitative Medicine, Frank H. Netter MD School of Medicine at Quinnipiac University, 370 Bassett Road, North Haven, CT 06473, United States
Department of Psychiatry, Yale School of Medicine, 300 George Street, New Haven, CT, 06511, United StatesDepartment of Neurology, Yale School of Medicine, 333 Cedar Street, New Haven, CT, 06510, United StatesDepartment of Psychology, Yale University, 2 Hillhouse Avenue, New Haven, CT, 06520, United StatesPain Research, Informatics, Multimorbidities and Education (PRIME) Center, VA Connecticut Healthcare System, 950 Campbell Avenue, West Haven, CT, 06516, United States
Psychology Service, VA Connecticut Healthcare System, 950 Campbell Avenue, West Haven, CT, 06516, United StatesDepartment of Psychiatry, Yale School of Medicine, 300 George Street, New Haven, CT, 06511, United States
Pain-related illness intrusiveness was related to activity engagement.
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After controlling for mood and disability, it predicted activities away from home.
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Coping strategies contribute to activity engagement affected by pain beliefs.
Abstract
Background
Pain can interfere with the daily functioning of persons with multiple sclerosis (PwMS). Furthermore, beliefs about pain and activity engagement are reliably associated with persons’ experience of chronic pain. This study aimed to explore the extent to which different aspects of PwMS’ activity engagement is related to pain-related illness intrusiveness, and whether certain coping and support systems mediate that relationship.
Methods
Participants (N = 161) were PwMS with at least mild pain who were recruited electronically through the North American Research Committee on MS (NARCOMS). Pain-related illness intrusiveness was measured using a modified version of the Illness Intrusiveness Ratings Scale (IIRS). Activity engagement was assessed with Section III of the West Haven-Yale Multidimensional Pain Inventory (WHYMPI). Correlations analyses were followed by multiple hierarchical regressions, with disability and depression symptom severity as covariates. Exploratory mediation analyses were then conducted with the subscales of the MS Resiliency Scale (MSRS).
Results
Pain-related illness intrusiveness was significant correlated with activities away from home (r = −0.37, p < .001), social activities (r = −0.26, p = .001), and household chores (r = −0.16, p < 0.05). After controlling for covariates, pain-related illness intrusiveness exclusively remained a significant predictor of activities away from home. Coping strategies from MSRS mediated the effect of pain-related illness intrusiveness on activities away from home (b = −0.01, p < .05), which represents a relatively small effect (R2med = 0.07).
Conclusions
These findings highlight the influence that PwMS’ pain experience can have on engagement in activities away from home and the indirect effects of positive coping strategies on that relationship.
). As with their overall disease, pain can interfere with aspects of PwMS’ daily functioning, such as mobility, employment, and engagement in recreational activities (
). Furthermore, beliefs about pain and activity engagement are reliably associated with persons’ experience of chronic pain. For example, PwMS may engage in less physical activity due to fear that it will worsen their pain. However, this may result in greater pain over time due to deconditioning and decreased physical functioning (
). PwMS have also been shown to have significantly lower levels of participation in home, social, and other types of activities following their diagnosis of MS, as well as in comparison to healthy controls (
Understanding the factors involved in activity engagement is important in helping promote optimal quality of life among PwMS. Using the construct of illness intrusiveness can help elucidate how the pain experience among PwMS is associated with activity engagement. The theoretical framework on illness intrusiveness states that factors related to the chronic illness and/or its treatment indirectly affects individuals’ well-being through disruption of meaningful activity engagement (
). While the measure, the Illness Intrusiveness Ratings Scale (IIRS), has typically been completed with regards to the overall condition, a recent study explored the concept of pain-related illness intrusiveness in PwMS by having participants respond to items with regards to their pain and subsequently examining it against their overall MS experience (
). The findings demonstrated that PwMS view their pain as being intrusive in their daily lives, even in relation to the totality of their MS-related challenges, and pain-related illness intrusiveness was associated with emotional distress and pain catastrophizing (
However, it remains unclear how pain-related illness intrusiveness is related to how often PwMS engage in certain activities, such as doing chores around their homes and socializing, particularly after considering the contributions from mood and disease severity, both of which have been previously associated with activity engagement in PwMS (
). Furthermore, understanding if certain strategies could mediate the relationship between pain-related illness intrusiveness and activity engagement will help to better understand the psychological processes involved, as well as potentially lay the groundwork for a future intervention. It has been previously demonstrated that aspects of resiliency (e.g., coping strategies and social support) mediate the relationship between pain catastrophizing, depressive symptom severity, and pain-related illness intrusiveness (
). Promoting resilience has also been the focus of two recent interventional studies in PwMS, which had favorable outcomes in quality of life and psychological well-being (
This study aimed to explore the extent to which PwMS’ activity engagement is related to pain-related illness intrusiveness. It was hypothesized that after accounting for disease severity and mood, PwMS’ reported pain intrusiveness will be a significant unique predictor of activity engagement. A secondary aim was to examine whether certain coping and support systems mediate that relationship, which could be potentially used to inform future pain-related interventions that may help increase activity engagement.
2. Materials and methods
2.1 Participants
Recruitment, enrollment, and sample size determination are described in greater detail in a separate paper (
). The current study focused on activity engagement, which was not examined in the previous paper. Briefly, participants were PwMS who were recruited via email through the North American Research Committee on MS (NARCOMS). Power analyses indicated that a sample size of 150 would be sufficient to conduct a regression analysis with up to 10 predictors and be able to detect a medium effect (
). Given the estimated response rate of 30% to 60% for NARCOMS surveys (Tuula M. Tyry, personal communication, April 21, 2016), five hundred emails were sent to registered PwMS who met the following inclusion criteria: 1) English-speaking, 2) able to access the Internet to complete the survey, and 3) experiencing at least mild pain, defined as a ≥ 2 on the pain question of the NARCOMS Pain Scale (
). As such, participants’ pain severity ranged from 2 (mild pain) to 5 (total disabling pain). The one-time survey was completed by participants through a version of Qualtrics that was compliant with the Health Insurance Portability and Accountability Act of 1996, which was open from June 2017 to July 2017. Informed consent was obtained electronically from participants via an information sheet on the first page of the survey. The study was approved by the Institutional Review Boards of VA Connecticut Healthcare System and Yale University School of Medicine, and all procedures were conducted in accordance with the Declaration of Helsinki.
2.2 Measures
A modified version of IIRS was used to measure pain-related illness intrusiveness (
). Using a Likert scale ranging from 1 (not very much) to 7 (very much), participants rated the intrusiveness of their pain in 10 different areas (i.e., health, work, active recreation, financial, relationship with significant other, sex, family relations, other social relations, self-expression/self-improvement, and community and civic engagement). The raw total score was used, which could range between 10 and 70. As previously reported (
). Participants indicated how often they complete each of the 18 activities on a scale of 0 (never) to 6 (very often). Four subscales were calculated by averaging the endorsed ratings on each item of the subscales (range = 0–6). The subscales are: Activities Away from Home (e.g., taking a trip), Social Activities (e.g., visiting friends), Household Chores (e.g., going grocery shopping), and Outdoor Work (e.g., working in the garden). Cronbach's alphas for the subscales ranged from 0.60 (Social Activities) to 0.82 (Household Chores).
Disability was self-reported using the Patient Determined Disease Steps (PDDS) (
), in which participants rated their level of ambulation ranging from 0 (normal) to 8 (bedridden). Depressive symptom severity was measured using the 7-item depression subscale of the Hospital Anxiety and Depression Scale (HADS-D) (
), was used to examine different coping and support systems that could mediate the relationship between pain-related illness intrusiveness and activity engagement. Five subscales were calculated by summing the items within each subscale: Emotional and Cognitive Strategies (range: 13–52), Physical Activity and Diet (range: 3–12), MS Peer Support (range: 2–8), Support from Family and Friends (range: 5–20), and Spirituality (range: 2–8). As with the WHYMPI, only the MSRS subscales were used in analyses. As previously reported (
), the Cronbach's alphas for the subscales ranged from 0.78 (Physical Activity and Diet) to 0.91 (Emotional and Cognitive Strategies).
2.3 Statistical analyses
Correlational analyses were conducted between the modified pain-related IIRS, WHYMPI subscales, PDDS, HADS-D, and MSRS subscales. Activities that were significantly correlated with the modified pain-related IIRS were entered as outcomes in individual multiple hierarchical regressions, with PDDS and HADS-D as covariates and the modified pain-related IIRS as the predictor. The exploratory simple mediation analyses were conducted using Hayes’ PROCESS (
). To limit the number of comparisons, the mediation analyses were only conducted when the modified pain-related IIRS was a significant predictor of a WHYMPI activity subscale and when MSRS subscales were significantly associated with the modified pain-related IIRS and a specific WHYMPI activity subscale. The analyses were conducted with IBM SPSS Version 21.
), participants (n = 161) were primarily female (n = 130), Caucasian (n = 152), with relapsing remitting MS (n = 86). On average, they were in middle adulthood (59.25 ± 8.31) with some college education (15.68 ± 2.71) and had MS for 19.86 (SD = 9.01) years. The median score on the PDDS was 4 (early cane; range: 0–8). In terms of their pain, participants endorsed experiencing pain for an average of 16.60 (SD = 10.39) years in 3.32 (SD = 1.54) locations, with a median of 3 (moderate pain; range: 2–5) on the NARCOMS Pain Scale. Participants’ mean scores on the modified pain-related IIRS, HADS-D, and subscales of the WHYMPI and MSRS are reported in Table 1.
Table 1Demographics and participants’ scores on the clinical measures (N = 161).
The modified pain-related IIRS was moderately correlated (Table 2) with Activities Away from Home (r = −0.37, p < .001) and weakly correlated with Social Activities (r = −0.26, p = .001) and Household Chores (r = −0.16, p = .042). It was not significantly related to Outdoor Work (r = −0.03, p = .706). Together, the PDDS and HADS-D ratings accounted for 16%, 8%, and 22% of the variance for Activities Away from Home, Social Activities, and Household Chores, respectively (Step 1 of Tables 3, 4, and 5). After controlling for these factors, the modified pain-related IIRS was a significant predictor of Activities Away from Home (Table 3), accounting for 4% of the model's variance. It was not a significant predictor of Social Activities (p = .076; Table 4) or Household Chores (p = .744; Table 5).
Table 2Correlation matrix with the subscales of the WHYMPI and the modified pain-related IIRS, PDDS, and HADS-D.
Two of the MSRS subscales were significantly correlated with Activities Away from Home: Emotional and Cognitive Strategies (r = 0.30, p < .001) and Support from Family and Friends (r = 0.28, p < .001). As noted in the previous paper (
), the modified pain-related IIRS was also significantly associated with Emotional and Cognitive Strategies (r = −0.44, p < .001) and Support from Family and Friends (r = −0.41, p < .001) from the MSRS. There was a significant indirect effect of the modified pain-related IIRS on Activities Away from Home through Emotional and Cognitive Strategies (Fig. 1), which was a relatively small effect (R2med = 0.07). There was not a significant indirect effect when Support from Family and Friends was the mediator (Fig. 2), although it was trending towards significance (p = .084).
Fig. 1Model of pain-related illness intrusiveness as a predictor of activities away from home, mediated by emotional and cognitive strategies. The confidence interval for the indirect effect is a BCa bootstrapped CI based on 5000 samples.
Fig. 2Model of pain-related illness intrusiveness as a predictor of activities away from home, mediated by support from family and friends. The confidence interval for the indirect effect is a BCa bootstrapped CI based on 5000 samples.
). The findings of this study showed that three distinct categories of activities were associated with pain-related illness intrusiveness. Persons who experience pain as a particularly intrusive symptom in the context of the array of limitations and challenges associated with MS report engagement in fewer household chores, social activities, and activities away from home. Even after controlling for general level of physical disability and depressive symptom severity, factors known to be associated with declines in activity engagement (
), pain-related illness intrusiveness remained a unique predictor of activities away from home. These results suggest that PwMS who view their pain as being more intrusive in their daily lives may be less active away from their homes. In part, this finding may reflect the aspects of daily life measured by the IIRS. For instance, the IIRS taps into health, active recreation, community involvement, and different social interactions. Having higher pain-related illness intrusiveness in these areas could potentially have a larger impact on how often a person engages in activities such as going out to eat, seeing a movie, or taking a trip more so than when mowing the lawn or washing the dishes. In addition, the varying contributions from disability and depressive symptom severity in the three models highlight the different roles these factors play in these types of activity engagement. For example, both were significant in the household chores model, while only depressive symptom severity contributed to engagement in activities away from home. Neither level of disability nor depressive symptom severity were significant in the social activities model, which is generally consistent with previous studies (
The exploratory analyses revealed that emotional and cognitive coping strategies mediated the relationship between pain-related illness intrusiveness and engagement in activities away from home. This suggests that the relationship between how intrusive PwMS view their pain and how often they engage in activities outside of their homes is partially explained by the coping strategies they employ. This makes sense theoretically, as persons who use less adaptive strategies, such as avoidance, may engage in fewer activities, while those who use positive coping behaviors, such as distraction, may engage in more activities. Given the cross-sectional nature of this study and the small, albeit significant, indirect effect, it cannot be determined at this time whether cognitive and behavioral strategies could help PwMS experiencing pain to increase their level of activity engagement, though it could provide the groundwork. As such, the next step would be to conduct an interventional trial that teaches adaptive coping strategies. There has been a growing literature on pain-focused interventions for PwMS that utilize psychotherapeutic techniques, including self-management (
Efficacy of a telephone-delivered self-management intervention for persons with multiple sclerosis: a randomized controlled trial with a one-year follow-up.
Effects of self-hypnosis training and cognitive restructuring on daily pain intensity and catastrophizing in individuals with multiple sclerosis and chronic pain.
). Understanding how to increase engagement in activities outside of the home could have significant benefits for PwMS’ quality of life.
When interpreting the current findings, certain limitations should be kept in mind. As the modified pain-related IIRS was utilized for the first time with our sample (
), both in terms of the items retained and its specific pain-related administration, it has not been validated in another group of PwMS. Although the previous study showed that pain-related illness intrusiveness can be distinguished from overall MS-related illness intrusiveness (
), it is possible that the same or similar findings would have been observed if the original IIRS was used. While the sample size was adequately powered to detect a medium effect with at least 10 predictors (
), smaller effects may not have been detected. As such, findings that were trending towards significance (i.e., Support from Family and Friends mediating the relationship between the modified pain-related IIRS and Activities Away from Home) may have reached significance with a larger sample. While the model considered the contributions from depressive symptom severity and disability on activity engagement, other MS-related factors were not included. Fatigue, for instance, has been shown to have a direct effect on illness intrusiveness (
). Furthermore, although the frequency that participants engaged in these activities was captured, other domains related to participation were not assessed, such as importance, satisfaction with or quality of the activities, and self-efficacy, which could be associated with different factors (
), a longitudinal study may be considered to assess changes in activity engagement over time and how that relates to pain-related illness intrusiveness. As the study was cross-sectional, causal relationships cannot be concluded. In addition, while participants were recruited from a large global registry, these findings may not reflect all PwMS’ experiences, as the current sample had a higher percentage of women and Caucasians (
) and may have excluded more impaired PwMS who would be unable to complete the electronic survey. Finally, all collected data were self-reported, including the inclusion criteria, and could not be confirmed given the nature of the study. That being said, previous validation of the NARCOMS registry showed that over 98% of persons enrolled had a definite diagnosis of MS (
Overall, PwMS’ pain experience is significantly associated with activity engagement, with pain-related illness intrusiveness predicting engagement in activities away from home. The indirect effects of emotional and cognitive strategies on that relationship indicate the contributions of coping behaviors on involvement in activities among PwMS living with pain.
Funding
Funding was received for this work.
Declaration of Competing Interest
None.
Acknowledgments
This work was supported fully by a Pilot Research Award from the CMSC.
The authors wish to thank Tuula Tyry, Ph.D. and NARCOMS for their assistance during the data collection phase of this study.
This data were presented as a poster at the 2019 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) in Seattle, WA. The Patient Determined Disease Steps (PDDS) is provided for use by the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry (www.narcoms.org/pdds). NARCOMS is a project of the CMSC.
The views and opinions expressed in this article reflect those of the authors and do not necessarily reflect those of the U.S. Department of Veterans Affairs.
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Efficacy of a telephone-delivered self-management intervention for persons with multiple sclerosis: a randomized controlled trial with a one-year follow-up.
Effects of self-hypnosis training and cognitive restructuring on daily pain intensity and catastrophizing in individuals with multiple sclerosis and chronic pain.
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