5 research outputs found
The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study.
BACKGROUND: In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes.
OBJECTIVE: The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients\u27 journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers.
METHODS: We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs.
RESULTS: Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS.
CONCLUSIONS: This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence
Socioeconomic position and the transmission of psychological distress: a life course and intergenerational analysis of the panel study of income dynamics
Low socioeconomic position is associated with worse mental health, yet few studies have examined how socioeconomic patterning or fluctuations over the life course can influence later psychiatric symptoms. Using the Panel Study of Income Dynamics, we examined how income patterning across the life course and across generations impacts present-day psychological distress symptoms.Ph.D.Includes bibliographical referencesby Bozena J. Kati
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Understanding preferences for type 2 diabetes mellitus self-management support through a patient-centered approach: a 2-phase mixed-methods study
Background: Patients with type 2 diabetes mellitus (T2DM) who participate in diabetes management programs have been shown to have better glycemic control and slower disease progression, although program participation remains low. In the USA, increasing participation in diabetes management support programs may also directly impact provider reimbursement, as payments are increasingly based on patient-centered measures. However, little is known about factors that may enhance patient participation. This study aimed at further understanding what is important in diabetes management support from the patients’ perspective and at assessing the utilization of various types of diabetes-management programs. Methods: A two-phase mixed-methods study was conducted of adult US members of PatientsLikeMe®, an online research network of patients. Phase 1 comprised qualitative interviews with 10 individuals to inform the online survey’s contents, aided by literature review. During phase 2, this online survey was completed by 294 participants who reported on their diabetes goals and preferences for T2DM self-management support programs. Results: The majority of the respondents were not participating in any program (65 %), but most had goals of improving diet (77 %), weight loss (71 %), and achieving stable blood glucose levels (71 %). Among those currently participating in programs, clinic, hospital-based, or other health-care professional programs were the most commonly used (51 %). The most preferred type of support was diet/weight-loss support (62 %), while doctors or nurses (61 %) and dietitians (55 %) were the most preferred sources of diabetes support. Conclusions: The low participation in diabetes self-management programs revealed in this study underscores the need for strategies to improve patient engagement. The results revealed support types and formats that patients with T2DM prefer and need. These findings may help improve patient engagement by guiding the future design of more effective diabetes management support programs. Electronic supplementary material The online version of this article (doi:10.1186/s12902-016-0122-x) contains supplementary material, which is available to authorized users