Decision-Making Around COVID-19 Public Health Measures and Implications for Self-Care Activities: Experiences of Persons With Rheumatoid Arthritis.

OBJECTIVE: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. METHODS: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. RESULTS: Thirty-nine participants (aged 26-86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) "upholding moral values of togetherness" because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) "relational autonomy-supports and challenges," because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) "differing trust in information sources," in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. CONCLUSION: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic.

Effect of digital monitoring and counselling on self-management ability in patients with rheumatoid arthritis: a randomised controlled trial.

OBJECTIVES: To assess a remote physiotherapist (PT) counselling intervention using self-monitoring tools for improving self-management ability, physical activity participation, and health outcomes in people with rheumatoid arthritis (RA). METHODS: Eligible participants were randomly assigned to receive group education, a Fitbit®, a self-monitoring app, and PT counselling phone calls (Immediate Group). The Delayed Group received a monthly e-newsletter until week 26, and then the intervention. The primary outcome was Patient Activation Measure (PAM-13). Participants were assessed at baseline, 27 weeks (the primary end point) and 53 weeks. Secondary outcomes included disease activity, pain, fatigue, depression, sitting/walking habits, daily physical activity time, and daily awake sedentary time. Generalized Linear Mixed-effect Models (GLMMs) were used to assess the effect of the intervention on the change of each outcome measure from the initiation to 27 weeks after the intervention. RESULTS: Analysis included 131 participants (91.6% women; 80.2% completed during the COVID-19 pandemic). The mean change of PAM-13 at 27 weeks was 4.6 (SD = 14.7) in the Immediate Group vs -1.6 (SD = 12.5) in the Delayed Group. The mean change in Delayed Group at 53 weeks (after the 26-week intervention) was 3.6 (SD = 14.6). Overall, the intervention improved PAM-13 at 27 weeks post-intervention from the GLMM analysis (adjusted coefficient: 5.3; 95% CI: 2.0, 8.7; p = <0.001). Favourable intervention effects were also found in disease activity, fatigue, depression, and self-reported walking habit. CONCLUSION: Remote counselling paired with self-monitoring tools improved self-management ability in people with RA. Findings of secondary outcomes indicate that the intervention had a positive effect on symptom management.

A longitudinal case-control analysis of pain symptoms, fear of childbirth, and psychological well-being during pregnancy and postpartum among individuals with vulvodynia.

OBJECTIVE: Little research has examined changes in chronic vulvar pain (vulvodynia) symptoms with pregnancy and childbirth, nor fear as it relates to pregnancy/delivery amongst individuals with vulvodynia. The purpose of this study was to examine change in pain symptoms from pregnancy to postpartum amongst women with vulvodynia, as well as pain anxiety, fear of childbirth, and anxiety and depressive symptoms. DESIGN: Prospective Case-Control Study. SETTING: Online survey. PARTICIPANTS: Fifty-Seven pregnant individuals with a diagnosis of vulvodynia, and 41 pregnant control participants who reported being free of vulvar pain. Participants were recruited from the community and from hospital-based clinics for this study. MEASUREMENTS AND FINDINGS: Online surveys were administered to women diagnosed with vulvodynia and pain-free control participants during pregnancy and at three and six months postpartum. The survey contained both investigator-developed items and validated questionnaires, including the Pain Anxiety Symptoms Scale (PASS-20), the Wijma Delivery Expectancy/Experience Questionnaire (W-DEQ) to assess fear of childbirth, the Generalized Anxiety Disorder-7 (GAD-7) measure to assess symptoms of anxiety, and the Patient Health Questionnaire (PHQ-9) to assess symptoms of depression. Linear mixed models with random intercepts for longitudinal analyses indicated statistical improvements for most of the vulvar pain outcomes in the postpartum period amongst women with vulvodynia, including reduced pain intensity at three (p = 0.005) and six months (p = 0.013) postpartum for those women who delivered vaginally. The mean change in pain intensity corresponded though to only a minimal clinical change. Compared to controls, women with vulvodynia reported higher levels of fear of childbirth on the W-DEQ (p = 0.024). In both groups, increases in general anxiety on the GAD-7 were found from pregnancy to three (p = 0.005) and six months (p = 0.033) postpartum. Mode of birth moderated the findings for pain-related anxiety as measured by the PASS-20: only individuals who delivered via caesarean section reported increases in pain anxiety between pregnancy and six months postpartum (p < 0.001). KEY CONCLUSIONS: Pregnant women with vulvodynia experienced postpartum improvements in vulvar pain symptoms. Mode of birth may play a role in symptom trajectory. IMPLICATIONS FOR PRACTICE: Individuals with vulvodynia often have concerns about how pregnancy and childbirth will impact their symptoms. The current findings can be used to help such individuals make reproductive decisions knowing there may be improvements in vulvar pain and increases in anxiety that can occur postpartum. The statistical versus clinical significance of the pain intensity results also highlight the importance of asking each individual what changes in pain symptoms they experience and the meaning of such changes for that person.