Resilience and Coping in a Rare Skeletal Disease Population to Face Coronavirus (COVID-19) Outbreak Distress: a Longitudinal Study
Condition: Multiple Osteochondroma; Osteogenesis Imperfecta; Ollier Disease; Maffucci Syndrome
MeSH terms: Osteochondroma; Exostoses, Multiple Hereditary; Osteochondromatosis; Osteogenesis Imperfecta; Enchondromatosis
Study type: Observational

Summary: 
      In the COVID-19 outbreak context, people living with rare diseases have been highly troubled
      with anxiety, loneliness, and depression. The project evaluates resilience and coping
      strategies to address pandemic impact by discussion in a dedicated focus group using a
      web-based platform. The goal is to improve, in a sustainable manner, the coping skills and
      psychological well-being of children, adolescents, and young adults affected by rare skeletal
      diseases.
    

Detailed description: 
      March 11th, 2020, the World Health Organization (WHO) declared the SARS-CoV-2 pandemic
      accordingly with the spread and size of the infection.

      The restrictions implemented by the governments have substantially changed people's
      lifestyles, facilitating the emergence of emotions such as fear, anxiety, and a sense of
      loneliness.

      The age groups most involved by these burdens have been childhood, adolescence, and young
      adults. These groups have experienced dramatic changes in their daily life in order the
      relational, educational, and social networks. Nonetheless, these links outline the ideal
      environment for the development of resilience and the promotion of coping strategies to face
      traumatic events.

      These lifestyle challenges and their consequences are even more evident in the context of the
      rare diseases since the outbreak containment measures have emphasized the troubles with which
      people affected by these conditions are daily forced to confront, in terms of access to care
      and treatments, resulting in increased stress and anxiety.

      The current phase represents a sensitive step for the resumption of the activities in charge
      of the health and social service aimed at the citizens and especially to people with special
      needs, such as people suffering from rare diseases.

      The pandemic experience has promoted new forms of meeting and contact between individuals
      using web-based platforms, playing a fundamental role in preserving the community and
      "sociality" dimensions.

      In this scenario, the rare diseases could be an attractive model since the pandemic impinges
      over their bio-psycho-social characteristics at different levels. Resilience and coping
      strategies adopted by rare diseases patients could configure as an exemplum to face the
      psychological distress resulting from anti-pandemic measures, suggesting new approaches of
      taking charge by health service.

      This study evaluates resilience and coping strategies to address pandemic impact by
      discussion in a dedicated focus group using a web-based platform. The goal is to improve, in
      a sustainable manner, the coping skills and psychological well-being of children,
      adolescents, and young adults affected by rare skeletal diseases.
    

Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Patient screening and enrollment will be carried out through:

          -  Rare Skeletal Disorders out-patient visit

          -  Rare Skeletal Disorders in-patient visit

          -  National Patients Organizations
      
Keywords: COVID-19; Psychological Distress; e-Health; Children, Adolescents, Young Adults; Coping Strategies; Rare Diseases; Focus group