Result card

  • ETH9: What are the proper end-points for assessment and how should they be investigated?
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What are the proper end-points for assessment and how should they be investigated?

Authors: Gottfried Endel

Internal reviewers: Wilhelm Donner, Scott Goulden, Grace Jennings, Paolo Giorgi Rossi, Ingrid Wilbacher, Claudia Wild

The best possible and most objective information to permit informed decision making or informed consent is needed, not only with regard to the ultrasound test but also, in cases where there is a positive test, about the subsequent pathway of care. Information on the subsequent steps should provide both an overview and in depth information on demand.

  • Respect for autonomy: organised population screening is a recommendation and provides information to support decision making on the individual level. Endpoints relevant for participants – their preferences and their fears – should be taken from qualitative surveys.
  • Non-maleficence: comprehensive information is needed to ameliorate the reduction in quality of life in cases of positive test results.
  • Beneficence: balancing risks and cost with potential benefits can only be done at the local level (information on cost and organisational issues is local). A societal perspective – looking beyond the healthcare system perspective – is recommended. The fears and preferences of citizens guide this balancing.
  • Justice: In this question the domain of justice addresses mainly the question of citizen involvement in the decision-making process. Expert opinion is also needed, but the leading role stays with patients and citizens.

The result card A0009 “What aspects of the burden of disease are affected by AAA screening?” presents an overview of outcome measures found in the literature. It was not addressed whether these outcomes were chosen by experts or with patient involvement. This should be clarified.

The general approach on the EU level has to be put into operation at the local level. This could be done using an interactive participatory approach to HTA.

  • Respect for autonomy: organised population screening is a recommendation and provides information to support decision making on the individual level. Endpoints relevant for participants – their preferences and their fears – should be taken from qualitative surveys.
  • Non-maleficence: comprehensive information is needed to ameliorate the reduction in quality of life in cases of positive test results.
  • Beneficence: balancing risks and cost with potential benefits can only be done at the local level (information on cost and organisational issues is local). A societal perspective – looking beyond the healthcare system perspective – is recommended. The fears and preferences of citizens are the guidance for this balancing.
  • Justice: In this question the domain of justice addresses mainly the question of citizen involvement in the decision process. Expert opinion is also needed, but the leading role stays with patients and citizens.

Standard mode of care

Respect for autonomy

Organised population screening

Respect for autonomy

Standard mode of care

Non-maleficence:

Organised population screening

Non-maleficence:

Standard mode of care

Beneficence:

Organised population screening

Beneficence:

Standard mode of care

Justice:

Organised population screening

Justice:


Important
Completely
Endel G Result Card ETH9 In: Endel G Ethical analysis In: Jefferson T, Vicari N, Frønsdal K [eds.]. Abdominal Aorta Aneurysm Screening [Core HTA], Agenzia nationale per i servizi sanitari regionali (age.na.s), Italy; 2013. [cited 5 July 2022]. Available from: http://corehta.info/ViewCover.aspx?id=106