Training activity information
Details
Prepare individuals for the potential outcomes of cancer and non-cancer predictive/pre-symptomatic genetic tests in trainee led consultations
Type
Entrustable training activity (ETA)
Evidence requirements
Evidence the activity has been undertaken by the trainee repeatedly, consistently, and effectively over time, in a range of situations. This may include occasions where the trainee has not successfully achieved the outcome of the activity themselves. For example, because it was not appropriate to undertake the task in the circumstances or the trainees recognised their own limitations and sought help or advice to ensure the activity reached an appropriate conclusion.
Reflection at multiple timepoints on the trainee learning journey for this activity.
Considerations
- Alternative options and the legitimacy of each option
- The benefits and risks of the alternatives, taking account of patients’ concerns and personal circumstances
- The uncertainties associated with the available options
- Assessing the individual’s understanding of the decision
- Exploring with patients their anticipated response to the potential outcomes of a predictive or pre-symptomatic genetic test
- Eliciting individual preferences for risk management options
- Eliciting patient preferences for reproductive options
- Eliciting patient preferences for predictive/pre-symptomatic genetic testing
- Informed consent
- Genetic tests available for different genetic conditions and clinical situations
- Procedure to order genetic tests
- The effect of genetic test results on patient care and the care pathway for different genetic conditions
- Implications for family members
- Risk, benefits and limitation of interventions
- International predictive testing guidelines
- Exploring and assessment of mental health
Reflective practice guidance
The guidance below is provided to support reflection at different time points, providing you with questions to aid you to reflect for this training activity. They are provided for guidance and should not be considered as a mandatory checklist. Trainees should not be expected to provide answers to each of the guidance questions listed.
Before action
What does success look like?
- Identify how you will support an individual and ensure they understand the implications of different results from predictive or pre-symptomatic testing.
- Consider how the learning outcomes apply, specifically in relation to ensuring the discussion adequately covers the potential impact on future health, surveillance, or preventative options.
- Discuss with your training officer to gain clarity of what is expected of you in relation to the required detail for discussing surveillance and preventative management guidelines for the condition in question.
What is your prior experience of this activity?
- Think about what you already know about discussing future health risks based on genetic information.
- Consider possible challenges you might face during the activity, such as helping individuals prepare for results that might indicate a predisposition to a future condition.
- Recognise the scope of your own practice for this activity i.e. know when you will need to seek advice or help, and from whom. You will need to seek advice from your Training Officer when required, for example if the patient raises complex ethical issues related to testing minors or confidentiality concerns regarding sharing results with family members.
- Acknowledge how you feel about discussing potentially anxiety-provoking information about future health with patients.
What do you anticipate you will learn from the experience?
- Consider the specific skills you want to develop, such as strategies to employ to effectively manage patient anxiety or expectations when discussing potential predictive test outcomes, drawing upon previous experiences of the activity.
- Identify the specific insights you hope to gain into the psychological impact of predictive genetic information and how best to prepare individuals for it.
What additional considerations do you need to make?
- Consider your previous experiences of predictive testing counselling or risk management discussions.
- Identify important information you need to consider before embarking on the activity, such as the specific surveillance or management guidelines associated with the conditions being tested for and specific ethical issues related to predictive testing (e.g., family implications or testing minors).
In action
Is anything unexpected occurring?
- Are you noticing anything surprising or different from what you anticipate whilst actively preparing the individual for potential predictive/pre-symptomatic test outcomes?
- Are you encountering situations such as:
- The patient expresses a desire for screening or management options that are at odds with guidance?
- Unexpected family history considerations, such as sibling conflict regarding disclosure?
How are you reacting to the unexpected development?
- How is this impacting your actions? For example, are you adapting or changing your approach to addressing the unexpected conflict or the family dynamic that arose?
- Consider the steps you are taking in the moment, such as focusing on exploring the reasons behind the concerns; or adapting your communication style to address the family conflict while maintaining client confidentiality.
- How are you feeling in that moment? For instance, are you finding it difficult to provide comprehensive preparation while managing the patient’s emotional concerns? Is it affecting your confidence in handling complex ethical considerations related to patient choice or disclosure?
What is the conclusion or outcome?
- Identify how you are working within your scope of practice. For example, were you able to prepare the individual for potential results and clarify their current position on receiving the outcome? Or are you needing support because the family conflict related to disclosure requires specific ethical or MDT consultation?
- What are you learning as a result of the unexpected development? For example, are you mastering techniques for exploring patient anxiety or gaining insight into the ethical complexities of predictive test disclosure within families?
On action
What happened?
- Begin by summarising the key steps you took when discussing specific outcomes and their future implications (e.g., for health management, family).
- Consider specific events, actions, or interactions which felt important, such as the moment the patient expressed strong feelings about management options.
- Include any ‘reflect-in-action’ moments where you had to adapt to the situation as it unfolded, for instance, immediately focusing on exploring the underlying reasons for their unexpected concerns about disclosure to family members.
- How did you feel during this experience, e.g., did you feel challenged by managing anxiety about future health or by unexpected ethical considerations?
How has this experience contributed to your developing practice?
- Identify what learning you can take from this experience regarding predictive outcomes preparation. What strengths did you demonstrate, e.g., explaining complex concepts like penetrance or variable expressivity?
- What skills and/or knowledge gaps were evident, e.g., difficulty managing acute anxiety about future health risks or handling family disclosure conflicts?
- Compare this experience against previous engagement with similar activities. Has your practice improved in addressing the concept of risk or future uncertainty effectively?
- Identify any challenges you experienced, such as needing to seek advice or clarification on scope of practice regarding how to manage sibling conflict regarding disclosure of predictive information, and how you reacted to this.
What will you take from the experience moving forward?
- Identify the actions or ‘next steps’ you will now take to support the assimilation of what you have learnt, including from any feedback you have received, with regards to improving ability to discuss future risks and uncertainty.
- What will you do differently next time you approach preparation for predictive test outcomes, for instance, improving your understanding of a specific conditions or management plan?
- Do you need to practise any aspect of the activity further, such as explaining risk management strategies or anticipating the psychological response to testing?
Beyond action
Have you revisited the experiences?
- How have your subsequent experiences of preparing individuals for predictive test outcomes since completing this specific training activity led you to revisit your initial approach or decisions during that activity? For example, how a subsequent case requiring discussion of uncertain risk (e.g., VUS or reduced penetrance) may have prompted you to re-evaluate the focus on long-term psychological impact and family implications during your first attempt at this training activity.
- Considering what you understand about psychological adaptation, long-term risk management, and family dynamics now, how have you since adapted your predictive testing practice?
- Has discussing the ethical complexities unique to predictive testing with colleagues, peers, or supervisors changed how you now view your initial experience in this training activity? For example, hearing a senior colleague talk about a case where a patient expressed regret over knowing their pre-symptomatic status may have deepened your understanding of the long-term psychological impact of these results.
How have these experiences impacted upon current practice?
- How has the learning from this initial training activity, in combination with subsequent experiences of preparing individuals for predictive test outcomes contributed to your overall confidence and ability in supporting individuals in exploring their anticipated response to potential outcomes? For example, how your accumulated ability in discussing long-term psychological impact and family implications now enables you to facilitate a patient’s autonomous decision-making process for pre-symptomatic testing.
- How has reflecting back on this specific training activity, combined with everything you’ve learned since, shaped your current approach to preparing individuals for predictive test outcomes?
- How does this evolved understanding help you identify when something is beyond your scope of practice or requires escalation?
- Looking holistically at your training journey, how has this initial predictive testing experience, revisited with your current perspective, contributed to your development in decision-making, counselling skills, and ethical practice in the context of predictive testing.
Relevant learning outcomes
| # | Outcome |
|---|---|
| # 1 |
Outcome
Lead on establishing the patient agenda and psychosocial needs in complex genetic and genomic counselling consultations, under the supervision of a GCRB registered Genetic Counsellor. |
| # 2 |
Outcome
Employ counselling skills to facilitate complex decision making during genetic and genomic counselling consultations. |
| # 3 |
Outcome
Apply communication skills to provide complex genomic test results in an empathic manner. |