Progression of Pentosan-Polysulfate Sodium-Associated Retinopathy: Intermediate Follow-Up.

BACKGROUND AND OBJECTIVE: To compare the risk factors for the development and progression of pigmentary retinopathy in patients exposed to pentosan polysulfate sodium (PPS). MATERIALS AND METHODS: Retrospective cohort study of patients exposed to PPS with at least two follow-up visits with multimodal imaging. RESULTS: A total of 97 patients were included (33 with PPS-associated retinopathy and 64 without). The average follow-up was 29.4 months, overall cumulative dose was 1,220 ± 910 g (1,730 ± 870 vs 959 ± 910; P < 0.0001), and total PPS duration was 12.1 ± 7.1 years (16.0.2 ± 6.1 vs 10.1 ± 6.9; P < 0.0001). The best-corrected visual acuity remained stable during follow-up. At presentation, the average area of the retinopathy in the worse eye was 54.1 ± 50 mm2 in the PPS-retinopathy group, worsening at a rate of 6.10 ± 10 mm2/year. Patients who developed choroidal neovascular membranes (CNVMs) had faster rates of retinopathy progression (11.6 ± 12 vs 3.53 ± 7.6 mm2/year, P = 0.036). No patient had the exact same gene mutation. CONCLUSION: PPS-associated pigmentary retinopathy can continue to progress over time, even after discontinuing the medication. CNVM development may be associated with faster rates of retinopathy progression. [Ophthalmic Surg Lasers Imaging Retina 2023;54:388-394.].

Screening Health-Related Social Needs in Hospitals: A Systematic Review of Health Care Professional and Patient Perspectives.

Health outcomes are markedly influenced by health-related social needs (HRSN) such as food insecurity and housing instability. Under new Joint Commission requirements, hospitals have recently increased attention to HRSN to reduce health disparities. To evaluate prevailing attitudes and guide hospital efforts, the authors conducted a systematic review to describe patients' and health care providers' perceptions related to screening for and addressing patients' HRSN in US hospitals. Articles were identified through PubMed and by expert recommendations, and synthesized by relevance of findings and basic study characteristics. The review included 22 articles, which showed that most health care providers believed that unmet social needs impact health and that screening for HRSN should be a standard part of hospital care. Notable differences existed between perceived importance of HRSN and actual screening rates, however. Patients reported high receptiveness to screening in hospital encounters, but cautioned to avoid stigmatization and protect privacy when screening. Limited knowledge of resources available, lack of time, and lack of actual resources were the most frequently reported barriers to screening for HRSN. Hospital efforts to screen and address HRSN will likely be facilitated by stakeholders' positive perceptions, but common barriers to screening and referral will need to be addressed to effectively scale up efforts and impact health disparities.

Pentosan Polysulfate Sodium-Associated Pigmentary Retinopathy: Risk Factors and Fundus Findings.

PURPOSE: To evaluate the risk factors and fundus findings of patients with potential PPS-associated retinopathy. PATIENTS AND METHODS: A retrospective chart review was performed of patients exposed to PPS who had a dilated fundus examination at a large retina-only practice from 2018-21. Multimodal images were evaluated by masked reviewers. RESULTS: A total of 148 patients were included, of whom 33 (22%) had PPS-associated retinopathy, and 115 (78%) did not. The mean age was 60.3 years old, and the mean follow-up was 11.8 months. The PPS-associated retinopathy group had higher mean cumulative doses of PPS (1600g±849 vs 864g±852, P < 0.0001, Mann-Whitney test) and longer duration of PPS use (13.6 years vs 7.48, P < 0.0001). There was no statistically significant difference based on a history of kidney or liver disease or the dosage per day for the weight, body mass index, body surface area, or lean body weight. Of the patients with PPS-associated retinopathy whose genetic results were available, 15 of 16 (93%) were heterozygous for variants of uncertain significance. CONCLUSION: A longer duration of PPS use and higher cumulative dosage of PPS were associated with an increased risk of developing PPS-associated pigmentary retinopathy. The role of genetic mutations in patients exposed to PPS is still to be determined.

The death of patients with terminal cancer: the distress experienced by their children and medical professionals who provide the children with support care.

BACKGROUND: Few studies have been conducted on the experiences of children of terminally ill patients or hospital-based medical professionals supporting such children. AIM: This study explored distress among individuals whose parents died of cancer in childhood and among hospital-based medical professionals supporting such children. DESIGN: A qualitative study. SETTING/PARTICIPANTS: The sample was 12 adults whose parents had died of cancer in childhood and 20 hospital-based medical professionals supporting children of patients' with terminal cancer. In-depth interviews were conducted, focusing on the distress experienced by the participants. The data were analysed thematically. RESULTS: Among adults whose parents died of cancer in childhood, we identified themes related to the period before death (eg, concealing the parent's illness), the time of death (eg, alienation due to isolation from the parent), soon after death (eg, fear and shock evoked by the bizarre circumstances, regrets regarding the relationship with the deceased parent before death), several years thereafter (ie, distinctive reflection during adolescence, prompted by the parent's absence) and the present time (ie, unresolved feelings regarding losing the parent). We identified seven themes among the medical professionals (eg, lack of knowledge/experience with children, the family's attempts to shield the child from the reality of death, estrangement from the family once they leave the hospital). CONCLUSIONS: An important finding of the study is that the participants' grief reaction to their parents' deaths during childhood was prolonged. Moreover, hospital medical professionals may find it difficult to directly support affected children. Comprehensive support involving organisations (eg, local communities) may be necessary for children who have lost a parent.