Codesigning a patient support portal with health professionals and men with prostate cancer: An action research study.

INTRODUCTION: The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool. METHODS: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive-content analysis. RESULTS: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision-making and side-effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision-making and side-effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. CONCLUSIONS: Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health-seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population-based sample. PATIENT OR PUBLIC CONTRIBUTION: This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript.

Establishing a global quality of care benchmark report.

BACKGROUND: The Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designing and implementing a quality of care report for TNGR. METHODS: Eleven working group sessions were held prior to and as reports were being built with representation from clinicians, data managers and investigators contributing to TNGR. The aim of the meetings was to understand current data display approaches, share literature review findings and ideas for innovative approaches. Preferred displays were evaluated with two surveys (survey 1: 5 clinicians and 5 non-clinicians, 83% response rate; survey 2: 17 clinicians and 18 non-clinicians, 93% response rate). RESULTS: Consensus on dashboard design and three data-display preferences were achieved. The dashboard comprised two performance summary charts; one summarising site's relative quality indicator (QI) performance and another to summarise data quality. Binary outcome QIs were presented as funnel plots. Patient-reported outcome measures of function score and the extent to which men were bothered by their symptoms were presented in bubble plots. Time series graphs were seen as providing important information to supplement funnel and bubble plots. R Markdown was selected as the software program principally because of its excellent analytic and graph display capacity, open source licensing model and the large global community sharing program code enhancements. CONCLUSIONS: International collaboration in creating and maintaining clinical quality registries has allowed benchmarking of process and outcome measures on a large scale. A registry report system was developed with stakeholder engagement to produce dynamic reports that provide user-specific feedback to 132 participating sites across 13 countries.

Vulval lichen sclerosus: An Australasian management consensus.

BACKGROUND/OBJECTIVES: Vulval lichen sclerosus (VLS) is a chronic inflammatory skin condition predominantly affecting the anogenital region in women and children. To date, there is lack of agreement amongst experts on a severity scale to aid assessment, research and treatment stratification on VLS. Furthermore, literature on best practice for long-term management of VLS is lacking. The aim of this consensus is to provide broad guidelines on the short and long-term management of VLS. METHODS: An initial focus group of Australasian experts in vulval dermatology developed a draft consensus statement for the management of VLS. Based on the results of the draft statement, a consensus panel of 22 Australasian experts, comprised of the initial and additional members, participated in an anonymous four-stage eDelphi process. Round 1 involved generation and voting on statements from the draft consensus statement developed by the focus group. In Rounds 2, 3 & 4, panel members were presented formal feedback from previous rounds and asked to indicate their level of agreement. Consensus was reached if there was ≥70% agreement on the importance of an item in the 4 (agree) to 5 (strongly agree) range. RESULTS: The expert panel, with a total of 504 collective years of experience in the field of VLS, reached consensus on a core set of 51 management statements related to diagnosis, severity, initial and long-term management, follow-up, and complications of VLS. CONCLUSIONS: This study has identified a set of management statements for VLS that may be useful in clinical practice in the Australasian population.

Late presentation of generalised bullous pemphigoid-like reaction in a patient treated with pembrolizumab for metastatic melanoma.

Dermatological toxicity is one of the most commonly reported immune-related adverse events in patients receiving checkpoint inhibitor immunotherapy. We report the gradual development of a widespread bullous pemphigoid-like reaction in a metastatic melanoma patient 8 months after commencing treatment with the programmed-death-1 (PD-1) inhibitor pembrolizumab, requiring prolonged corticosteroid therapy. This case highlights the potential for insidious and late development of severe cutaneous toxicity following PD-1 inhibitor therapy and suggests that even prolonged immunosuppression may not necessarily compromise the efficacy of PD-1 inhibition in advanced melanoma.

Fingertip dermatitis refractory to topical corticosteroids associated with nail-patella syndrome.

A 14-year-old girl and her 47-year-old father presented with fingernails that were hypoplastic, spoon-shaped and ridged since birth. Fingertip dermatitis and paronychia were also observed in the daughter, which had been present since birth and had progressively worsened. The daughter denied trauma to her fingernails or chronic exposure to irritants and allergens. She had previously tried topical corticosteroids for 18 months without any benefit. We put forward the possibility of chronic paronychia and fingertip dermatitis, refractory to topical corticosteroids, as associations of digital nail-patella syndrome.

Segmental haemangioma of infancy of the lower limb with skeletal overgrowth.

A female infant presented at 3 months of age with vascular lesions involving the left lower limb and left side of the vulva. At birth, the left leg was thinner than the right, but equal in length. She had macular, reticulate, bluish discolouration covering most of the skin of the involved leg with superimposed cherry-red papules, most dense over the proximal portion. The macular component showed evidence of improvement within the first few months of life. Papular and nodular components over the leg and the vulva progressively increased in size and thickness until the age of 10 months. These elements had the appearance and behaviour typical of haemangioma of infancy. Regression of these lesions started at the age of 15 months. By the age of 6.5 months, the involved leg was no longer thinner than the right, but the left leg and foot had grown longer. Leg length discrepancy peaked at 2.4 cm at the age of 2 years. The most rapid phase of relative growth discrepancy of left and right leg bones was contemporaneous with the growth phase of the haemangioma. Radiological investigations and histopathology have been consistent with haemangioma of infancy. GLUT-1 immunostaining of the lesion was positive.

Golfer's vasculitis.

A number of patients presented with an erythematous, purpuric rash occurring on the legs in association with playing golf and also after prolonged walks or hikes. Many patients believed that it was an allergic reaction to grasses or insecticides and had sometimes undergone extensive allergy testing. We collected reports of 17 such cases from dermatologists in the state of Victoria, Australia. Patients were interviewed by phone and asked to submit photographs of the rash if possible. Of these, the eruption developed in 15 after playing 18 holes of golf and in three following prolonged hikes. The rash would usually develop over the summer months under hot conditions. Most patients were over 50 years of age when the tendency to develop the eruption began. Biopsies of the rash in the active phase showed leukocytoclastic vasculitis. Patch testing and investigations for potential underlying causes for vasculitis were negative or unremarkable. It would seem that this is a common but poorly documented condition. The clinical presentation and histology would support the conclusion that it represents a leukocytoclastic vasculitis induced by prolonged exercise under hot conditions. The findings would suggest that it occurs in healthy people and extensive investigation with blood tests or allergy testing is inappropriate. We believe the condition should be termed 'golfer's vasculitis', as golf appears to be the most common precipitating event and such a term would enable the condition to become more widely recognized.

Foot dermatitis caused by the textile dye Basic Red 46 in acrylic blend socks.

17 male subjects are described with foot dermatitis in association with positive patch test reactions to the textile dye Basic Red 46. Chromatographic analysis of the socks of 2 affected patients confirmed the presence of Basic Red 46. Withdrawal of the acrylic blend socks suspected of having been dyed with Basic Red 46 resulted in the improvement of symptoms in 12 of 17 patients (70.6%). However, equivocal or negative patch test results to their own socks were frequently noted in those patients. A highly significant association between the presence of foot dermatitis and a positive Basic Red 46 patch test reaction was noted in 555 patients from a patch test clinic population (P < 0.001). The prevalence of positive patch test reactions to Basic Red 46 was 1.2%. We suggest that patients with foot dermatitis be routinely patch tested for textile dyes. In particular, testing with Basic Red 46 should be considered in those with a history of use of dark-coloured acrylic and/or acrylic blend socks.