Barriers, Facilitators, and Preferences for Mental Health Services Among Patients With Systemic Lupus Erythematosus: A Qualitative Study.

OBJECTIVE: Although patients with systemic lupus erythematosus (SLE) experience high levels of depression and anxiety disorders, evidence concerning patient perceptions of facilitators and barriers to effective uptake of mental health services (eg, referral to therapists and psychiatrists, psychoeducational interventions, or support groups) is limited. METHODS: We conducted semistructured qualitative interviews with 15 adults with SLE to explore patient experiences and perceptions of mental health services to identify facilitators and barriers to accessing mental health care among patients with SLE. Qualitative interviews were conducted via telephone and audio recorded for transcription and directed content analysis using NVivo software by two coders. RESULTS: The median age of the 15 participants was 48 years, 87% were female, 33% identified as Black or African American, and 33% identified as Hispanic or Latino. Qualitative themes were organized into three domains: barriers, facilitators, and preferences for mental health services. Barriers to the use of mental health services include mental health stigma, sociodemographic factors, lack of autonomy, and time commitment. Facilitators to the use of mental health services included strong relationships with their rheumatologists and mental health care clinician experience with patients with SLE. Preferences for mental health services included education-based formats, mental health providers who work with patients with SLE, peer group formats, demographically and disease-matched psychological resources, and an emphasis on non-disease-related activities. CONCLUSION: In the setting of persistent unmet psychosocial needs of patients living with SLE, data from this qualitative study will inform the development and refinement of mental health interventions that bolster psychological wellbeing in the SLE population.

The link between post-traumatic stress disorder and systemic lupus erythematosus.

Systemic lupus erythematosus (SLE) is a heterogeneous, multisystem autoimmune disorder characterized by unpredictable disease flares. Although the pathogenesis of SLE is complex, an epidemiologic link between posttraumatic stress disorder (PTSD) and the development of SLE has been identified, suggesting that stress-related disorders alter the susceptibility to SLE. Despite the strong epidemiologic evidence connecting PTSD and SLE, gaps remain in our understanding of how the two may be connected. Perturbations in the autonomic nervous system, neuroendocrine system, and at the genomic level may cause and sustain immune dysregulation that could lower the threshold for the development and propagation of SLE. We first describe shared risk factors for SLE and PTSD. We then describe potential biological pathways which may facilitate excessive inflammation in the context of PTSD. Among those genetically predisposed to SLE, systemic inflammation that accompanies chronic stress may fan the flames of smoldering SLE by priming immune pathways. Further studies on the connection between trauma and inflammation will provide important data on pathogenesis, risk factors, and novel treatments for SLE.

Peer support in patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT): a qualitative study.

Peer support, a distinctive form of social support in which patients share emotional, social, and practical help based on their own lived experience of illness and treatment, positively impacts patient-reported outcomes in cancer populations. However, data on peer support experiences among hematopoietic stem cell transplant (HSCT) recipients are limited. We conducted semi-structured qualitative interviews among 12 allogeneic HSCT recipients who were ≤6 months post transplant without any complications and 13 allogeneic HSCT recipients >6 months post transplant and living with chronic graft-versus-host disease. Interviews explored patients' experiences with peer support and their preferences for a peer support intervention tailored to the needs of HSCT recipients. While the majority (70%) of participants reported no formal experience with peer support, most (83%) articulated themes of potential benefits of peer support (e.g., managing expectations and uncertainty that accompany HSCT). Most participants (60%) reported a preference for a peer support intervention prior to the HSCT hospitalization. Despite the limited data on peer support interventions among HSCT recipients and lack of formal peer support experience in most of our cohort, our study shows that HSCT recipients clearly acknowledge the potential benefits of a peer support intervention, and they prefer that it start prior to transplantation.

It Takes a Village: The Importance of Social Support after Hematopoietic Stem Cell Transplantation, a Qualitative Study.

Social support is essential to the recovery of patients who have undergone hematopoietic stem cell transplantation (HSCT). We undertook a qualitative study to explore the specific sources and benefits of social support as experienced by HSCT recipients, as well as their unmet social support needs. We conducted semistructured interviews with 25 HSCT recipients recruited from the Dana Farber Cancer Institute's HSCT database. The interviews explored the sources of support that patients receive, the type of assistance social support networks provide to patients, and unmet needs of social support. Interviews were audio-recorded, transcribed, and coded using Dedoose software. The median age of participants was 63 years (range, 22 to 73 years), and 13 (52%) were female, 20 (80%) were white, and 9 (36%) had been diagnosed with acute myelogenous leukemia. Participants reported receiving a majority of support from immediate family and close friends, with the primary benefits of social support including help with essential daily tasks and household chores, and receipt of emotional support. Participants reported occasional support from other patients but highlighted a desire for increased connection with patients who have undergone the same treatment. Participants also communicated a desire for more guidance on how to optimize the support they do receive and the need for more educational resources for caregivers and supporters to enhance understanding of the HSCT process and lessen patient burden. Participants reported relying on support from their family, friends, and other social connections for essential aspects of their recovery and daily living following HSCT. Although there are many benefits from these relationships, patients emphasized the need for more guidance and resources to facilitate post-transplantation aid and support.

Coping strategies in patients with acute myeloid leukemia.

Patients diagnosed with acute myeloid leukemia (AML) face sudden-onset life-threatening disease that requires intensive treatments. Although their early disease trajectory is characterized by significant, toxic side effects, limited data are available describing coping strategies among patients with AML and how these inform patient-reported outcomes. We used cross-sectional secondary data analyses to describe coping in 160 patients with newly diagnosed high-risk AML. The Brief COPE, Hospital Anxiety and Depression Scale, Post-Traumatic Stress Disorder Checklist-Civilian Version, and Functional Assessment of Cancer Therapy-Leukemia were used at time of AML diagnosis to measure coping strategies, psychological distress, and quality of life (QOL), respectively. The median split method for distribution of coping domains and multivariate regression models were used to assess the relationship between coping and patient-reported outcomes. Participants (median age, 64.4 years) were mostly non-Hispanic White (86.3%), male (60.0%), and married (73.8%). Most (51.9%) had high utilization of approach-oriented coping strategies, whereas 38.8% had high utilization of avoidant coping strategies. At time of diagnosis, use of approach-oriented coping was associated with less psychological distress (anxiety, ß = -0.262, P = .002; depression symptoms, ß = -0.311, P < .001; and posttraumatic distress disorder symptoms, ß = -0.596, P = .006) and better QOL (ß = 1.491, P = .003). Use of avoidant coping was associated with more psychological distress (anxiety, ß = 0.884, P < .001; depression symptoms, ß = 0.697, P < .001; and posttraumatic distress disorder symptoms, ß = 3.048, P < .001) and worse QOL (ß = -5.696, P < .001). Patients with high-risk AML use various approach-oriented and avoidant coping strategies at time of diagnosis. Use of approach-oriented coping strategies was associated with less psychological distress and better QOL, suggesting a possible target for supportive oncology interventions.

Navigating the university transition among women who self-report an eating disorder: A qualitative study.

OBJECTIVE: Although developmental milestones have been observed to alter eating disorder (ED) symptom burden, it remains unknown how the transition to university affects symptomatology. To address this gap, we designed a qualitative study to elucidate how students with an ED perceive their general university experience and to describe how the university environment shapes their ED. METHOD: Undergraduate students who self-reported an ED were recruited through fliers, an undergraduate advocacy organization, and local treatment centers. We conducted audio-recorded semi-structured individual interviews. Two investigators separately coded verbatim transcripts using an editing approach, and final themes emerged from the pattern of descriptors. RESULTS: Fifteen undergraduate students participated. Participants endorsed a variety of ED symptoms and sought various levels of treatment. Most participants transitioned to university with an already-established diagnosis. Participants described that ED symptoms tended to worsen in university for a variety of reasons including (a) minimization of ED severity, (b) loss of external accountability, (c) use of ED symptoms as a coping mechanism, and (d) glorification of ED behaviors in campus diet culture. Subsequently, the ED disrupted the university experience by (e) hindering participants' ability to focus on academic responsibilities and (f) leading to social isolation on campus. DISCUSSION: We identified challenges unique to the university experience that can be addressed by ED treatment teams in order to provide anticipatory guidance and patient-centered care. Study limitations include lack of formal diagnostic ED assessment by research team and sampling of students from one university.

Single-port donor nephrectomy provides improved patient satisfaction and equivalent outcomes.

OBJECTIVE: Minimally invasive techniques have expanded the donor pool for living kidney donation. We changed our approach to single-port donor nephrectomy in 2009 and have compared outcomes with traditional multiple-port laparoscopic donor nephrectomy. BACKGROUND: The development of minimally invasive surgical techniques to procure kidneys from living donors has allowed expansion of living donor renal transplantation to account for one third of all renal transplants. Recent technical advancement allows for the entire surgical procedure to be done through a single incision contained within the umbilicus. METHODS: We compared outcomes from 135 single-port donor nephrectomies with an immediately preceding cohort of 100 multiple-port laparoscopic donor nephrectomies. Survey data were collected from both groups to compare outcomes. Additional comparisons were made to total center experience with 1300 laparoscopic donor nephrectomies. RESULTS: A total of 135 patients completed successful single-port donor nephrectomy without major complication or open conversion. Another 16 patients required additional port placement because of excessive intra-abdominal fat or limited abdominal domain. Compared with multiple-port donor nephrectomy, single-port patients had similar operative times to cross clamp (2.8 vs 2.6 hours; P = 0.11) that normalized after a learning curve of approximately 50 cases. Recipient creatinine levels were similar at 1 week and 1 month posttransplant. Although 36-Item Short Form Health Surveys demonstrated no significant differences, additional survey data revealed that single-port patients were more satisfied with cosmetic outcomes (P < 0.01) and the overall donation process (P = 0.01). Single-port approach had similar outcomes compared with all previous laparoscopic donor nephrectomies. CONCLUSIONS: Single-port donor nephrectomy can be integrated as a standardized approach for renal donation without additional donor risk, and with benefits of improved patient satisfaction with cosmetic and overall outcomes. Although the primary benefit is cosmetic, (a single incision predominantly contained within the umbilicus) outcomes justify application for kidney donors in experienced centers and may motivate additional living kidney donation.