Reducing Uncertainty Distress in Long Term Health Conditions
Condition: Rheumatic Diseases
MeSH terms: Rheumatic Diseases; Collagen Diseases
Study type: Interventional

Summary: 
      The goal of this pilot intervention study is to develop and test a new psychological therapy
      model in people with long term health conditions (rheumatic conditions) who are experiencing
      distress (anxiety or low mood) in relation to the uncertainty that their illness causes.

      The main questions the study aims to answer are:

        1. Does the new treatment model help participants reduce uncertainty distress associated
           with their health condition?

        2. Is it a practical treatment that can be ran within a hospital setting?

        3. Is the treatment acceptable to participants?

      Participants will be asked to attend weekly therapy sessions (up to a maximum of 16 sessions)
      in the hospital or via telehealth. The sessions will be based on the new treatment model and
      aimed at helping participants reduce uncertainty where they can and learn to live alongside
      it where it cannot be reduced. The hope is that if participants can better manage uncertainty
      this will reduce the distress (anxiety or low mood) that they feel.
    

Detailed description: 
      Uncertainty is a natural part of chronic illness and is typically experienced as aversive for
      most people. Sources of uncertainty in illness can include living with ambiguous symptoms,
      unpredictability of flare ups, if/when the illness will worsen and how effective treatment
      will be. Whilst some real-world uncertainty is inevitable in illness, perceived uncertainty
      can be exacerbated by inconsistent and/or inadequate health information. High levels of
      illness uncertainty have been associated with greater emotional distress/mood disturbances,
      poorer adjustment and reduced quality of life.

      Uncertainty management interventions have traditionally focused on reducing uncertainty
      through information management strategies. These have been shown to be effective in improving
      patient knowledge of their condition, improve patient-health professionals communication,
      mood and coping skills. Research into emotional disorders have identified uncertainty as a
      transdiagnostic source of distress and studies increasing tolerance of uncertainty have been
      shown to be effective.

      To date there is no research combining informational interventions to reduce perceived
      uncertainty and interventions increasing tolerance of uncertainty in those with chronic
      health conditions. The aim of this study is pilot a transdiagnostic treatment model combining
      both elements. The intervention consists of 4 main interventional areas; information
      management, building safety, addressing overestimation of threat, and tolerating uncertainty.
      This treatment has the potential to reduce disease distress and burden and potentially reduce
      health care utilisation if patients are managing their health conditions and associated
      uncertainty better.

      Using single case design this study will look to develop and evaluate the new treatment
      intervention. The aim is to establish whether his treatment is feasible and acceptable to be
      delivered within a health care setting.

      Up to 6 participants will be recruited from the Rheumatology department within a hospital
      setting. Participants will be experiencing distress related to the uncertainty of their
      diagnosed health condition and willing to engage in a psychological treatment to reduce
      distress.

      Treatment will consist of 16 weekly therapy sessions (dependent on clinical need) delivered
      face to face or via telehealth.
    

Intervention name(s): Uncertainty distress model
Intervention type(s): Behavioral
Intervention description(s): Psychological therapy intervention based on elements of traditional Cognitive Behaviour Therapy (CBT) for anxiety, illness uncertainty and intolerance of uncertainty.
Intervention model: Single Group Assignment
Intervention model description: Single Case Design
Masking: None (Open Label)
Primary purpose: Treatment
Keywords: Uncertainty