Characterizing the 'feel-good experience' in multiple sclerosis patients treated with natalizumab or other therapies.

Aim: Patients with relapsing-remitting multiple sclerosis (RRMS) treated with natalizumab have anecdotally reported a 'feel-good experience' (FGE). The authors characterized the FGE using survey data from patients with RRMS treated with natalizumab or other disease-modifying therapies (other-DMT). Methods: Questionnaire data from RRMS patients who use MyMSTeam, an online patient social network, were analyzed. Results: The survey included 347 patients (95 natalizumab; 252 other-DMT). More natalizumab than other-DMT patients self-reported having an FGE (62.1 vs 44.8%; p = 0.001) as well as other physical, emotional and cognitive benefits. Conclusion: This study demonstrates that physical, emotional and cognitive benefits were more commonly reported by patients treated with natalizumab than those treated with other disease-modifying therapies and helps characterize patient-reported factors associated with the FGE.

Impact of endometriosis on women's life decisions and goal attainment: a cross-sectional survey of members of an online patient community.

OBJECTIVES: To examine women's perceptions of endometriosis-associated disease burden and its impact on life decisions and goal attainment. DESIGN: An anonymous online survey was distributed in October 2018 through the social media network MyEndometriosisTeam.com. PARTICIPANTS: Women aged 19 years and older living in several English-speaking countries who self-identified as having endometriosis. OUTCOME MEASURES: Patients' perspectives on how endometriosis has affected their work, education, relationships, overall life decisions and attainment of goals. Subanalyses were performed for women who identified as 'less positive about the future' (LPAF) or had 'not reached their full potential' (NRFP) due to endometriosis. RESULTS: 743 women completed the survey. Women reported high levels of pain when pain was at its worst (mean score, 8.9 on severity scale of 0 (no pain) to 10 (worst imaginable pain)) and most (56%, n=415) experienced pain daily. Women reported other negative experiences attributed to endometriosis, including emergency department visits (66%, n=485), multiple surgeries (55%, n=406) and prescription treatments for symptoms of endometriosis (72%, n=529). Women indicated that they believed endometriosis had a negative impact on their educational and professional achievements, social lives/relationships and overall physical health. Most women 'somewhat agreed'/'strongly agreed' that endometriosis caused them to lose time in life (81%, n=601), feel LPAF (80%, n=589) and feel they had NRFP (75%, n=556). Women who identified as LPAF or NRFP generally reported more negative experiences than those who were non-LPAF or non-NRFP. CONCLUSIONS: Women who completed this survey reported pain and negative experiences related to endometriosis that were perceived to negatively impact major life-course decisions and attainment of goals. Greater practitioner awareness of the impact that endometriosis has on a woman's life course and the importance of meaningful dialogue with patients may be important for improving long-term management of the disease and help identify women who are most vulnerable.

Living With Inflammatory Bowel Disease: Online Surveys Evaluating Patient Perspectives on Treatment Satisfaction and Health-Related Quality of Life.

Background: The quality of life of persons living with inflammatory bowel disease (IBD) is impacted by the physical and psychosocial burdens of disease, as well as by their satisfaction with the quality of care they receive. We sought to better understand (1) the drivers of satisfaction with treatment, including treatment goals, treatment selection, and attributes of patient/health care professional (HCP) interactions, and (2) how IBD symptoms affect aspects of daily life and overall quality of life. Methods: Two online questionnaires were accessed via MyCrohnsAndColitsTeam.com. The Treatment Survey assessed desired treatment outcomes, past and present therapies, and experiences with the patient's primary treating HCP. The Quality of Life survey assessed respondents' most problematic IBD symptoms and their influence on family and social life, work, and education. Respondents had Crohn's disease (CD) or ulcerative colitis (UC), were 19 years or older, and resided in the United States. All responses were anonymous. Results: The Treatment Experience survey was completed by 502 people (296 CD, 206 UC), and the Quality of Life survey was completed by 302 people (177 CD, 125 UC). Reduced pain, diarrhea, disease progression, and fatigue were the most desired goals of treatment. Biologics and 5-aminosalicylates were reported as a current or past treatment by the greatest proportion of patients with CD and UC, respectively. A numerically lower proportion of respondents with UC than CD reported use of biologic or small molecule therapy; conversely, a numerically greater proportion of respondents with UC than CD reported these drugs to be very or extremely effective. The HCP was key in the decision to switch to, and in the selection of, biologic or small molecule therapy. Overall satisfaction with an HCP was greatly driven by the quality and quantity of the communication and of the time spent with the HCP. Troublesome abdominal symptoms most impacted aspects of social and family life. Emotional challenges associated with IBD were experienced by most respondents. Conclusions: Treatment goals of respondents seem to align with HCPs overall treatment goals, including control of gastrointestinal symptoms and prevention of disease progression. Persons with UC might be offered biologic and small molecule therapies less often, despite reported high efficacy by users. Feeling heard and understood by the HCP are key drivers of treatment satisfaction. Quality communication in the patient/HCP relationship enables a better understanding of the patients' goals, disease burden, and emotional needs, which are all key factors to consider when developing a personalized and comprehensive treatment plan and optimizing quality of life.

Patient-Physician Interactions Regarding Dyspareunia with Endometriosis: Online Survey Results.

INTRODUCTION: Dyspareunia can be a debilitating symptom of endometriosis. We performed this study to examine women's experiences with painful sexual intercourse, the impact of dyspareunia on patients' lives, and perceptions of interactions with healthcare practitioners. METHODS: An anonymous 24-question online survey was provided through the social media network MyEndometriosisTeam.com and was available internationally to women aged 19-55 years who were self-identified as having endometriosis and had painful sexual intercourse within the past 2 years. RESULTS: From June 13 to August 20, 2018, 860 women responded and 638 women completed the survey (United States, n = 361; other countries, n = 277; 74% survey completion rate). Respondents reported high pain levels (mean score, 7.4 ± 1.86; severity scale of 0 [no pain] to 10 [worst imaginable pain]), with 50% reporting severe pain [score of 8 to 10]). Nearly half (47%) reported pain lasting ≥24 hours after intercourse with the pain often leading to avoiding (34%) or stopping (29%) intercourse. Pain impacted patients' lives, causing depression (61%), anxiety (61%), low self-esteem (55%), and relationship strain. Many women feared to seek help (10%). Of those women who approached practitioners, many (36%) did not receive effective treatments. DISCUSSION: Women with dyspareunia related to endometriosis experience severe pain that can negatively impact patients' lives. Dyspareunia may be a challenging topic for discussion for both patient and practitioner, leading to a suboptimal treatment approach and management. Results suggest that practitioners need improved education and training regarding dyspareunia to evaluate and treat patients' sexual pain caused by endometriosis.

Assessing pulmonary arterial hypertension in infants with severe chronic lung disease of infancy: a role for a pulmonary artery catheter?

The treatment of pulmonary arterial hypertension (PAH) associated with chronic lung disease of infancy (CLDI) is becoming commonplace. However, an optimal approach to the monitoring of this treatment has not been clearly established, and data suggest that such therapy may not be without risk. This study assessed the feasibility and safety of pulmonary artery catheter (PAC) placement and its role in the management of PAH associated with CLDI. The medical records of 12 infants with CLDI requiring chronic mechanical ventilation who underwent PAC monitoring were reviewed. Data analyzed included demographics, hemodynamic data, PAH pharmacological therapy, respiratory support, echocardiographic data, sedation level, complications related to PAC use, and mortality. In this analysis, PAC placement and monitoring was found to be feasible, appeared safe, and was associated with the ability to wean inspired oxygen, decrease sedation, and titrate PAH therapy without untoward effect. However, no definitive conclusions can be drawn from this report given its small sample size and uncontrolled, retrospective design. It is hoped that these data will renew interest in PAC monitoring for CLDI and foster prospective study where its true value can be ascertained.