The need for continuity of care and psychological support for chronic diseases is widely accepted, as is the negative impact of psychological issues on treatment adherence and the quality-of-life in patients affected by thalassaemia major.
Mental Health: An Overlooked Component of Thalassaemia
There is a surprising lack of published evidence for psychological support interventions in thalassaemia, thus demonstrating the unpreparedness of the patient and medical community to provide substantial support to these patients during the acute periods of the pandemic.
The rarity of the disease in many countries, adds isolation to the other factors leading to lack of interaction with other patients (i.e. peers), invisibility by national health authorities, insufficient focus by treating physicians on the psychosocial needs, as well as the stigmatisation of belonging to migrant communities.
Several reports suggest that the COVID-19 pandemic has further exacerbated these issues, due to the vulnerability of patients with thlassaemia requiring them to shield and socially distance themselves from others. This has in turn influenced not only the socialisation of patients, but also exacerbated stress-related disorders, affecting patient adherence to treatment (v. blood transfusion and iron chelation therapy). What is more, the uncertainty of treatment availability (e.g. reduced blood donations) and the disruption of treatment schedules (e.g. postponed visits to specialists due to lockdown measures) have impacted negatively and to a greater extent the psyche of these chronic patients.
The Mental Health Project: Added Value and Objectives
Corroborated by the European Centre for Disease Prevention and Control’s (ECDC) guidance on the risk of COVID-19 vulnerable groups to mental health issues, this project aims to understand and address needs for support and contribute to the long-term appreciation of mental health on treatment adherence. It also seeks to ascertain the exact extent of this impact on thalassaemia patients, and to suggest ways to address these issues through peer-to-peer support, educational tools and a long-term surveillance system of mental health issues in this population.
Focusing on a much-neglected area, this project will allow TIF to offer new services to the patient community by providing a more diverse and responsive focus. The pandemic has enabled TIF, to get closer to the patient community, as, in the absence of travel, virtual meetings have become the norm. Understanding the psychosocial impact of the disease, irrespective of the pandemic, will be of huge benefit to both the Federation and the global patient community, as services and treatments can be further personalized.
The Mental Health Project: Activities’ Description
An expert team will develop, based on existing published literature and the aims of the project, a series of questions to be asked in personal interviews with patients. The one-on-one interviews are expected to take place in Autumn 2022 with analysis of the data occurring in late 2022.
Each episode gives a voice to patients to convey their experiences with thalassaemia in relation to key psychosocial topics thus contributing to the empowerment of other patients and families and succeeding to provide a better understanding of daily struggles and the burden of disease to healthcare professionals, policymakers and the general public.
Encompassing issues of patient concern in regard to social, professional and personal development whilst balancing the demands of a chronic disease has been the focus of a session, entitled ‘The impact of living with thalassaemia’, that took place on 3 July 2022 in Stockholm, Sweden.