Holistic health record for Hidradenitis suppurativa patients.

Hidradenitis suppurativa (HS) is a recurrent inflammatory skin disease with a complex etiopathogenesis whose treatment poses a challenge in the clinical practice. Here, we present a novel integrated pipeline produced by the European consortium BATMAN (Biomolecular Analysis for Tailored Medicine in Acne iNversa) aimed at investigating the molecular pathways involved in HS by developing new diagnosis algorithms and building cellular models to pave the way for personalized treatments. The objectives of our european Consortium are the following: (1) identify genetic variants and alterations in biological pathways associated with HS susceptibility, severity and response to treatment; (2) design in vitro two-dimensional epithelial cell and tri-dimensional skin models to unravel the HS molecular mechanisms; and (3) produce holistic health records HHR to complement medical observations by developing a smartphone application to monitor patients remotely. Dermatologists, geneticists, immunologists, molecular cell biologists, and computer science experts constitute the BATMAN consortium. Using a highly integrated approach, the BATMAN international team will identify novel biomarkers for HS diagnosis and generate new biological and technological tools to be used by the clinical community to assess HS severity, choose the most suitable therapy and follow the outcome.This work was supported by a Biomolecular Analyses for Tailored Medicine in AcneiNversa (BATMAN) project, funded by ERA PerMed (JTC_2018) through the Italian Ministry of Health, the “Fondazione Regionale per la Ricerca Biomedica” (FRRB), the Slovenian Ministry of Education, Science, and Sport (MIZŠ), the Austrian Science fund (I 4229), the Federal Ministry of Education and Research Germany (BMBF), and ANR automate (ANR-20-CE15-0018-01). This work was also supported by and by a grant from the Institute for Maternal and Child Health IRCCS ‘Burlo Garofolo/Italian Ministry of Health (RC16/2018) and by a Starting Grant (SG-2019-12369421) founded by the Italian Ministry of Health. Figures were created with BioRender.com

Novel Research in Sexuality and Mental Health

Sexuality is considered as a great human value related to happiness and satisfaction, but unfortunately, when affecting mental disorders, they tend to be associated with second level human functions. Nevertheless, sexual dysfunction often accompanies psychiatric disorder, intensely influencing compliance, quality of life and human relationships. Sexuality could be influenced either by a mental disorder itself, difficulties to get and maintain couple relationships or by the use of psychotropic treatments. Treatment-related adverse events are unfortunately under-recognized by clinicians, scarcely spontaneously communicated by patients, and rarely investigated in clinical trials. The most frequent psychotropic compounds that could deteriorate sexuality and quality of life include antidepressants, antipsychotics and mood regulators. There are important differences between them related to some variations in mechanisms of action including serotonin, dopamine and prolactin levels. Little is known about the relevance of sexuality and its dysfunctions in chronic and frequent mental and neurological disorders, such as psychosis, mood disorders, anxiety, phobias, eating disorders, alcohol or drug dependencies, epilepsy and childhood pathology. Poor sexual life, low satisfaction and more frequent risky sex behavior than in the general population are associated with severe mental diseases. There is a need for increasing research in this field, including epidemiological, psychological, neurophysiological, neuroanatomical and genetic variables related to sexual life to get a better understanding of the implicated mechanisms. To increase the sensibility of clinicians, the identification and management of sexual disturbances after the onset of any mental disorder should be highlighted. This would avoid unnecessary suffering and deterioration of quality of life

Mindfulness-based online support for children and families affected by skin conditions

The research presented in this thesis concerns the psychosocial impact of skin conditions for children and parents, with a specific focus on understanding their needs, and determining the potential role that mindfulness might have in alleviating stress. A mixed methods approach was used, broadly following a participatory person based approach and ultimately led to the testing of a novel intervention. Mindfulness involves acting with awareness, focusing attention on the present, and responding in a non-judgemental manner to experiences. A systematic review of mindfulness for children with physical health conditions suggested there is a gap in research employing interventions with families and indicated the approach could reduce anxiety, depression and caregiver stress. To understand the issues faced by children affected by skin conditions, there is a need to investigate the experiences of people with lived expertise. Study 1 employed qualitative enquiry with dyadic interviews with families (n=23) to identify issues surrounding care/current psychological support, gain feedback on what is needed from future interventions, and investigate the relevance of mindfulness. Findings suggested that mindfulness might be well-accepted by children and their parents, and desires were expressed for exercises to reduce daily stress, that could: (1) fit into everyday routines, (2) be delivered online, and (3) include group support. Study 2 was a qualitative investigation of (n=15) dermatology/psychology healthcare professionals’ (HCPs) experiences of providing care for children with skin conditions and their views on psychological support. Findings supported existing evidence for the burden experienced by families, and suggested that parents might benefit as the therapeutic target. HCPs acknowledged the need for further support for children and their families. Therefore, Study 3 used single-case methods to investigate the effectiveness of a mindfulness-based intervention for n=10 parents of children with common and rare skin conditions. The ‘Living in the Present’ intervention was an eight-week facilitated psychoeducational group. The findings suggested mindfulness could reduce parental stress and improve quality of life. Overall, the body of work within this thesis demonstrates that mindfulness could be an effective intervention for families affected by skin conditions

Exploring androcentricity in medicine, medical research and education, and the impacts on the experiences of female patients

Lea Merone explored female patient representation in medical research, education and practice. She found that women are under-represented in some areas of health research and that fundamental differences between women and men are not adequately included in medical school curricula. Australian women with chronic conditions report feeling dismissed and disbelieved by their doctors. Lea is now advocating for clinical education to address these gaps

Illness identity and preferences for group therapy in adults with chronic illness

This thesis explored, through an online survey, the illness perceptions and group therapy preferences of 213 adults with chronic health conditions. This research study was the first to introduce the concept of illness identity to the context of group therapy and filled significant gaps within the literature regarding the firsthand preferences of this population. The participants were recruited through a variety of social media platforms, including chronic illness support groups on Facebook. Descriptive and nonparametric statistics were used to explore: (a) what adults with chronic illness want from group therapy, (b) how illness identity was characterized in this transdiagnostic sample, and (c) how illness identity relates to preferences for group therapy. The data demonstrated that illness identity significantly related to preferences regarding the characteristics of group leaders, elements of group structure, and topics to address in group. Future directions for research and practice recommendations for group therapists are provided.SSHRC Joseph Armand Bombardier Canada Master's Scholarshi

Establishment of the measurement properties and clinical interpretation of the Family Reported Outcome Measure (FROM-16)

Chronic diseases impact the quality of life (QoL) of family members as well as patients. The Family Reported Outcome Measure (FROM-16) could be used to measure this family impact. This PhD study aims to validate FROM-16, transforming it into a robust clinical and research tool, that can also inform health economic appraisal of medical interventions. Descriptive score bandings give meaning to QoL assessment, allowing clinicians to make better-informed decisions. The FROM-16 score banding (0-1=no effect on family members; 2-8=small effect; 9-16=moderate effect;17-25=very large effect; 26-32=extremely large effect on family members) was created using an anchor-based method and data from 4,413 family members of UK patients, recruited online. A major obstacle to including family members' impact in health economic evaluation has been the lack of appropriate utility measures comparable to EQ-5D-3L. To address this gap, using data from 4,228 family members, FROM-16 was mapped to EQ-5D-3L to generate utility values using multinomial logistic regression and split-half validation. The algorithm now enables researchers to calculate EQ-5D health utility values from FROM-16 scores. For FROM-16 to measure the impact of a new intervention on family members, its sensitivity to change must be demonstrated. A study including 83 NHS patients and family members confirmed that the FROM-16 was responsive to change (paired samples t-test p < 0.05). The data from 100 family members were used to calculate the Minimal Clinically Important Difference (MCID). This benchmark to evaluate clinically significant improvement was estimated for FROM-16 as a score change of ‘four’ points using anchor and distribution-based methods. The FROM-16 was used in a global COVID-19 study demonstrating that family members of COVID-19 survivors (n=735) experienced a substantial QoL impact of their relative's COVID-19. This study confirmed the value of FROM-16 for use in a pandemic. Major new aspects of FROM-16 have now been successfully validated

“Between a rock and a hard place”: the “wicked problem” of coproducing chronic oedema care

Introduction Coproduction is a term which refers to how customers and service-users contribute to the planning, design, delivery, and implementation of goods and services, with service providers. Contemporary coproduction literature reflects a paternalistic perception of service-users with lower socioeconomic status and their interactions and relationships with specialist and non-specialist health professionals. Background Within the contemporary coproduction literature there is a suggestion that that individuals living within a context of socioeconomic deprivation are less equipped to coproduce care. Whilst service-users living with LTCs may have the knowledge, skills to manage their LTC despite socioeconomic disadvantage, there is a lack of research exploring these experiences. This study explored how coproduction is operationalised, and the impact of socioeconomic position and social capital, within the context of ongoing care across hospital and home settings. Theories of coproduction were applied, to explore shared-decision making, the implementation of care “at home”, and the dynamics of power between service-providers and service-users living with long-term conditions (LTC). Methods A mixed methods study was undertaken using, in-depth, face-to-face interviews of service-users from two Lymphoedema Clinics (City and rural) within a regional service; overt non-participant observations within the clinics, to observe the dynamic between the service-users and specialist health professionals. Service-users, partial postcodes and the addresses of General Practitioner” (GPs) were documented to identify the distribution of service-users attending the clinic 1, and to contextualise socioeconomic position of the study setting. NHS ethical approval for the study was obtained through the Regional Ethics Committee, and permission was gained to access all study Sites within the NHS organisations. Findings The findings of this study indicate that socioeconomic status does not prevent service-users from coproducing their care, in terms of their skills and knowledge or the “operant resources” they uses to engage in shared-decision making. However, a lack of economic resources and social capital, or “operand resources”, makes the coproduction of care more challenging for service-users; especially when treatment options are limited, and the implementation of care is within the “home”. In addition, service-users often perceived that non-specialist health professionals lacked the skills, knowledge and expertise to meet their care needs. Care was described by the participants as based upon a traditional, hierarchical and often biomedical model of care. This approach did not always align with the daily life of the participants, which involved balancing condition management against the desire to maintain normality, and achieve the goals that they identified as important The mitigating factor for many of the participants was the social capital and network of support they developed with the SHPs and their significant others; this evolved as an “operand resource”, in terms of trust and reciprocity and the tangible effect of co-implementing and co-delivering care. Conclusion This study addresses the research gaps related to exploration of coproduction for people with LTC, between hospital and home, and the need for more research to empirically evidence service-users’ experience. Social capital, trust, accountability, responsibility, and reciprocity are perceived as essential to operationalise the coproduction of care and actualise a more equitable partnership between service-users and service-providers