Qualitative assessment of the patient experience of primary hyperoxaluria type 1: an observational study.

BACKGROUND: Without effective intervention, primary hyperoxaluria type 1 (PH1) causes oxalate-induced kidney damage, leading to end-stage kidney disease and serious complications throughout the body. Although PH1 carries a heavy burden that impacts quality of life, literature on the experiences of those living with PH1 and caring for patients with PH1 is limited. This study aimed to describe the diagnostic journey in PH1 and characterize patients' and caregivers' self-reported experiences throughout the disease course. METHODS: This was an observational study involving in-depth, semi-structured telephone interviews. Dominant trends were assessed using constant comparative analysis to identify themes in interviewees' descriptions of their experiences. Individuals aged ≥ 12 years and caregivers of children aged 6-17 years with genetically confirmed PH1 were eligible. Informed consent/assent and ability to read and speak English were required. RESULTS: Interviewees (16 patients, 12 caregivers) reported a prolonged diagnostic journey due to low disease awareness, among other factors. Upon diagnosis, PH1 was frequently symptomatic, typically involving kidney stone-related symptoms but also potentially symptoms arising beyond the kidneys. PH1 most commonly led to worry and social impairment in adolescents, impaired physical function in adults, and a range of impacts on caregivers. In late-stage disease, dialysis was the most burdensome aspect of living with PH1 (due to time requirements, limitations from living with a catheter, etc.), and this burden was exacerbated by the COVID-19 pandemic. Benefits desired from PH1 management included reductions in laboratory measures of oxalate burden, kidney stone and urination frequency, and oxalate-related skin ulcers. CONCLUSIONS: PH1 greatly impacts patients' and caregivers' lives, primarily due to burdensome disease manifestations and associated emotional, physical, and practical impacts, as well as disease management challenges - particularly those related to dialysis in late-stage disease.

Meeting the Information and Support Needs of Blood Cancer Patients and Caregivers: A Longitudinal Study of a Model of Patient-Centered Information Delivery.

Access to reliable, up-to-date information and resources can assist individuals managing and living with cancer. The Leukemia & Lymphoma Society, through its Information Resource Center, provides personalized information and support to individuals affected by blood cancer. To examine its value and impact, we conducted qualitative interviews (n = 18) and an online survey of patients and caregivers (N = 515) after they talked with an Information Resource Center Information Specialist by phone, with a follow-up survey about 6 months later. Respondents most commonly contacted the Information Resource Center to get referrals to support programs (40.4%) and to obtain information about getting a second opinion (36.5%) and financial assistance (36.2%). After talking with an Information Specialist, respondents felt more hopeful (85.9%), more confident in managing care (82.9%), and more knowledgeable about their diagnosis (49.5%) and financial resources (42.4%). After speaking with an Information Specialist, respondents changed how they advocated for themselves/loved one (23.8%), changed how they communicated with doctors/other providers and family/friends (both 15.9%), received financial assistance (22.2%), and took other actions. Among respondents who took actions, most said that the conversation(s) had positively impacted the action. Respondents who spoke with an Information Specialist more than once were more likely to report positive impacts, including changing how they advocate for themselves/loved one and communicate with providers (both p < 0.05). Respondents diagnosed more recently were also more likely to report positive impact, including changing the way they communicate with providers (p < 0.05). Findings highlight the value of cancer helplines and suggest ways they can be most effective.

Effects of adjunctive brexpiprazole on calmness and life engagement in major depressive disorder: post hoc analysis of patient-reported outcomes from clinical trial exit interviews.

BACKGROUND: Though often overlooked, calming patients and increasing their life engagement are key factors in the treatment of major depressive disorder (MDD). This study aimed to test the hypothesis that adjunctive brexpiprazole increases calmness and life engagement among patients with MDD, based on clinical trial exit interviews. METHODS: This was a pooled analysis of exit interview data from three exploratory, open-label studies of adjunctive brexpiprazole 1-3 mg/day. The studies enrolled 105 outpatients with MDD (DSM-IV-TR criteria), a current depressive episode, and inadequate response to antidepressant treatment during the current episode. Patients were interviewed if they completed the end-of-treatment visit (Week 6 or Week 12, depending on the study). Exit interviews took the form of semi-structured telephone interviews in which patients were asked mostly qualitative questions about their symptoms prior to the start of the study, and about improvements they had noted during treatment. Interview transcripts were reviewed and codes were assigned to calmness and life engagement vocabulary, allowing aggregation of the frequency of improvement in various domains. RESULTS: 79.8% (83/104) of patients described improvements consistent with at least one calmness term, most commonly feeling less anxious (46.2%) or less irritable (44.2%). A four-domain concept of patient life engagement was developed in which 88.6% (93/105) of patients described improvements consistent with at least one domain, specifically, emotional (77.1%), physical (75.2%), social (41.9%), and/or cognitive (36.2%). Of the patients who described improvement in calmness, 96.4% (80/83) also described improvement in life engagement. CONCLUSIONS: Analysis of exit interview data suggests that patients were calmer and more engaged with life following treatment with adjunctive brexpiprazole. Thus, adjunctive brexpiprazole may provide a benefit on subjective patient outcomes in addition to the improvement in depressive symptoms shown by clinical rating scale data. TRIAL REGISTRATION: Data used in this post hoc analysis came from ClinicalTrials.gov identifiers: NCT02012218, NCT02013531, NCT02013609.

Patients' perspectives of endometriosis-related fatigue: qualitative interviews.

BACKGROUND: Endometriosis-related fatigue is common and negatively impacts multiple areas of many women's lives, particularly in day-to-day activities, social activities, physical activities, mood and emotions, relationships with family or partners, and work or school. Multiple studies have documented fatigue as a significant symptom of endometriosis. Additional research is needed to better understand endometriosis-related fatigue and its impacts on patients. METHODS: This qualitative study consisted of individual in-person semistructured interviews conducted with 22 adult females reporting moderate to severe endometriosis-related pain. Women with self-reported, surgically confirmed endometriosis and moderate to severe endometriosis-related pain were recruited from qualitative research firms in two locations in the United States. Qualified subjects participated in semistructured interviews that lasted approximately 45 min each. Interviews were audio recorded and transcribed for qualitative analysis. RESULTS: All 22 participants reported experiencing fatigue related to their endometriosis. While the degree of severity of their endometriosis-related fatigue varied, 21 of the 22 participants stated that it was at least "somewhat bothersome." Most participants noted an impact from endometriosis-related fatigue on day-to-day activities, social activities, physical activities, mood and emotions, relationships with family or partner, and work or school. CONCLUSIONS: The data presented here indicate that endometriosis-related fatigue has a pervasive impact on the functioning of women living with this condition. Future studies should measure any changes in fatigue that may be associated with treatment for endometriosis.

Using 360-Degree Video as a Research Stimulus in Digital Health Studies: Lessons Learned.

Due to the accessibility of omnidirectional cameras to record 360-degree videos and the technology to view the videos via mobile phones and other devices, 360-degree videos are being used more frequently to place people in different contexts and convey health-related information. Increasingly, 360-degree videos are being employed in health marketing because they have the potential to enhance health-related attitudes and behaviors. As a case study on how this technology may be used for health-related information and its effect on health care providers, we created a 360-degree video that portrays the experience of a migraine sufferer to be used as a stimulus in an online study. We describe the challenges and lessons learned in designing and implementing a 360-degree video as part of an online experiment focused on inducing empathy among clinicians for understanding patient experience. Given the rapid change in digital technology, future research can use this knowledge to design and implement 360-degree video studies more effectively.