Do patients with high versus low treatment and illness burden have different needs? A mixed-methods study of patients living on dialysis

Background Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients’ insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden. Methods We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants’ treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles were invited to participate in interviews and observations. Results Quantitatively, participants in the high burden group were significantly younger (mean = 48.4 years vs. 68.6 years respectively, p = <0.001). No other quantitative differences were observed. Qualitatively, we found differences in patient self-management practices, such as the high burden group having difficulty establishing a new rhythm of life to cope with dialysis, greater disruption in social roles and self-perception, fewer appraisal focused coping strategies, more difficulty maintaining social networks, and more negatively portrayed experiences early in their dialysis journey. Conclusions and relevance Patients on dialysis reporting the greatest illness and treatment burden have difficulties that their low-burden counterparts do not report, which may be amenable to intervention.

Associations of Mental Health and Chronic Physical Illness During Childhood With Major Depression in Later Life

While poor health in childhood has implications for mental health years later, less is known regarding its long-term impact. We determined whether childhood chronic physical illness burden was associated with major depression (MD) in later life (i.e., &gt;50 years), and tested mediation by childhood mental health status using path analysis. Data came from the 2016 U.S. Health and Retirement Study (n=18,047). One standard deviation increase in childhood chronic physical illness burden was associated with 1.21 (95% CI = 1.12, 1.30) times higher odds of MD in later life. Childhood mental health status explained 57.8% (95% CI: 35.2, 80.4) of this association. Results indicated that the relationship of chronic physical illness burden in childhood with MD in later life was mediated by childhood mental health status. Whether greater screening for psychiatric-related symptoms in childhood or review of health histories in later life can reduce the burden of MD requires further study.

Integrating Palliative Care Assessment Tools to Enhance Understanding of Illness Trajectory in Post-Acute Care and Long-Term Care

Objectives: To determine whether education and integration of the Gold Standard Framework Proactive Identification Guidance (GSF-PIG) and the Palliative Performance Scale (PPS) into care rounds, in post-acute care settings, can facilitate communication between the interprofessional care team to enhance understanding of illness trajectories, identifying those who would benefit from a palliative approach to care. Methods: Interprofessional care teams received training on the GSF-PIG and PPS which were integrated into weekly care rounds and completed a post-evaluation survey. A chart review was conducted for the 40 patients and residents reviewed with the GSF-PIG and PPS. Data analysis included descriptive statistics and comparisons of characteristics between patients and residents who were grouped as positive or negative on the GFS-PIG surprise question using chi square analyzes and t-tests. Results: The GSF-PIG and PPS were found to enhance communication within care teams and enhance understanding of patient and resident’s illness burden. The chart review revealed that patients and residents whom the team would not be surprised if they died within 1 year were older (p = .002), had a lower PPS score (p = .002) and had more indicators of decline (p < .001) compared to patients and residents the team would be surprised if they died within the year. Conclusion: Training interprofessional care teams on the utilization and integration of the GSF-PIG and PPS during weekly care rounds helped increase the understanding of patient and resident illness burden and illness trajectory to identify those who may benefit from a palliative approach to care.

Exploring associations between constipation, severity of neurofibromatosis type 1 and NF1 mutational spectrum

Neurofibromatosis type 1 (NF1) is inherited in an autosomal dominant manner and is a rather common rare disease. Until recently, studies on gastrointestinal symptoms in patients with NF1 have been few and mostly described as case reports. In three previously published studies, the frequency of constipation in patients with NF1 has been found to be as high as 30%. In this study, associations between the frequency of constipation and NF1 disease severity and NF1 mutational spectrum were investigated. Among 277 patients with NF1, 49 had constipation. The highest rate of constipation was found among patients with a high perception of NF1 illness burden, and patients with constipation had a significantly higher NF1 illness burden when comparing the “not bothered” and the “very bothered” (p = 0.013). We found no significant association between constipation and the remaining measures on severity of NF1, nor between constipation and genetic variants. When observing the NF1 mutational spectrum, one variant (c.1013A>G (p.Asp338Gly/p.?) was identified in three patients with constipation of which two patients were related. The variant c.2970_2972delAAT (p.Met992del) associated with a mild NF1 phenotype was identified in two related patients with constipation. This study is the first to explore the association between symptoms of constipation, NF1 severity, and NF1 mutational spectrum. The results suggest an association between constipation and a high degree of illness burden. Awareness of this association among physicians could lead to more patients with NF1 being diagnosed with constipation. Constipation impacts on quality of life, hence a timely diagnosis and treatment will improve quality of life.