Introduction
Breast Reconstruction
Information and Decision-making
Design and Development of Interventions
Method
Results
Identify, Define and Specify the Problem Behaviour
Select Target Behaviours
Determinants of patient satisfaction after breast reconstruction (summarised from National Audit 2011) | Potential target behaviours |
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Surgical and aesthetic • Post-op appearance of the breast including scarring (of the breast and donor site), symmetry, appearance (clothed and unclothed) • Softness of the breast • Pain, swelling, sensation, arm and shoulder pain (in particular following Lattissimus dorsi procedures) abdominal and lower back pain and discomfort (in particular after DIEP procedures) Psychosocial • Emotional wellbeing including confidence in social settings, feeling feminine, normal, attractive, of equal value to other women • Sexual wellbeing including: feeling sexually attractive (clothed and unclothed), comfortable in sexual activity, satisfied with sexual life • Lifestyle wellbeing including for lattissimus dorsi: back and shoulder pain, difficulty in lifting objects, raising arms above head, doing up zippers, hair styling: repeated activities such as throwing balls, playing tennis: for DIEP, sitting up, ordinary day-to-day activities such as making bed, pulling in the abdomen, lower back pain Experience of care process • Including quality and amount of information, involvement in decisions, understanding of what the patient wanted, sensitivity of staff, availability, reassurance | Explain PEGASUS approach to shared decision-making • Role of health professional • Role of patient Elicit information from patient: • The cancer journey so far • Experience of care • Expectations of outcome of breast reconstruction (aesthetic, psychosocial and process) Introduce expert information to discuss and modify expectations where appropriate Elicit, rate importance and record patient goals • Aesthetic and surgical • Psychosocial and lifestyle Use PEGASUS sheet to record: • Exchange information • Inform and frame surgical planning • Discuss and modify expectations if appropriate • Prompt and use as reminder at home and with relatives • Inform final decision about surgery |
Specify Target Behaviours
Target behaviour | Who needs to do the behaviour? | What do they have to do differently? | When do they do it? | Where do they do it? | How often do they do it? | With whom do they do it? |
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Elicit patient experience of cancer journey so far | Coach | Ask questions and reflect back before providing information | At the first meeting | In the breast clinic | Once | Patient |
Provide information | Coach | Differentiate information about surgical, psychosocial and process outcomes | At the first meeting | In the breast clinic | Once | Patient |
Explain shared decision making | Coach | Outline the role of the health professional and the role of the patient | At the first meeting | In the breast clinic | Once | Patient |
Elicit patient understanding and expectations | Coach | Differentiate surgical (aesthetic) and psychosocial expectations | At the first meeting | In the breast clinic | Once | Patient |
Record and rank goals | Coach | Write down patient goals differentiating surgical and psychosocial goals | At the first meeting | In the breast clinic | Once | Patient |
Rate importance of each goal from 0 to 10 | ||||||
Share information with patient | Coach | Provide copy of the written record | At the first meeting | In the breast clinic | Once | Patient |
Discuss the surgical decision | Surgeon | Use the written record to frame discussion of potential surgery | At the second meeting | In the breast clinic | Once | Patient |
Set expectations | Surgeon | Identify which patient goals are most directly to be impacted by surgery (aesthetic) and which least (psychosocial) | At the second meeting | In the breast clinic | Once | Patient |
Rate probability of achieving surgical goals | At the second meeting | In the breast clinic | Once | Patient | ||
Plan next steps | Surgeon | Share record of consultation with patient | At the second meeting | In the breast clinic | Once | Patient |
Jointly agree a treatment plan | At the second meeting | In the breast clinic | Once | Patient |
Identify What Needs to Change via COM-B Analysis
Identify Intervention Functions
Identify Policy Categories
Identify Behaviour Change Techniques
No. | Behaviour change techniques | Session 1: coach | Session 2: surgeon |
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Target behaviour: elicit and agree a written record of the factors influencing the decision to have BR | Target behaviour: use the PEGASUS written record to inform and discuss options about BR and to make (and record ) the final decision | ||
Label | Examples | Examples | |
1.1 | Goal setting (behaviour) | Generate discussion with the patient of their current understanding and the expectations that underpin their decision to have BR surgery with specific focus on both expectations of physical and psychosocial factors | Reintroduce the PEGASUS sheet as the basis for discussing options and sharing information about surgery Ask whether there have been any changes since previous consultation Explain that the purpose of the session is to make a final decision about surgery and plan next steps |
1.2 | Problem solving | Identify specific factors that are important for them including expectations of physical appearance and psychosocial consequences including wearing a prosthesis Prompt the patient to identify barriers preventing them from making a decision such as weighing up the pros and cons, need for more information etc. | Ask if the patient requires more information Discuss the different options available on the basis of the history and clinical examination, together with the expectations and preferences of the patient set out on the PEGASUS form Offer advice and modify expectations as appropriate |
1.3 | Goal setting (outcome) | Summarise in writing and rate importance of each specific physical and psychosocial goal for the individual on the PEGASUS form | Summarise the decision with the patient Record the decision |
1.4 | Action planning | Encourage a plan to review the PEGASUS form with friends or family and revise if needed. Set a time for doing so Ask patient to take PEGASUS form to appointments with the surgeon Show the PEGASUS form to the surgeon | Encourage a plan to review the decision with friends or family and revise if needed. Set a time for doing so. Offer follow-up appointment or Book patient for next step towards surgery/discharge |
1.5 | Review behaviour goal(s) | Review goals if patient is seen for a second appointment (NB: most are seen only once) | Review decision if patient is seen for a second appointment (NB: most are seen only once) |
1.7 | Review outcome goal(s) | Review the factors listed on the PEGASUS sheet as determined in session 1 Consider modifying surgical decision in light of the importance of goals ranked on PEGASUS form, e.g. if physical activities using the arms are rated as highly important (such as tennis) ensure that patient is aware of implications of one BR procedure v another | |
1.9a | Commitment | Ask the person to use an ‘I will’ statement to affirm or reaffirm a strong commitment (i.e. ‘I will bring the form to my next appointment and show it to the surgeon’) | Ask the person to use an ‘I will’ statement to affirm or reaffirm a strong commitment (i.e. ‘I will give up smoking before being added to surgical list’) |
2.4 | Self-monitoring of outcome(s) of behaviour | Encourage the patient to record any additional factors that occur to them or that emerge in discussion with others Encourage the patient to look at the PEGASUS sheet again before the appointment with surgeon to ensure that all factors are still relevant and included | |
3.1 | Social support (unspecified) | Consider introduction to support groups and advise sources of support where relevant | Support attendance at support group where relevant |
3.2a | Social support (practical) | Encourage the patient to consider what help the individual might need (e.g. opportunity to talk things through with other people, coming with them to an appointment) and how this might be provided | If a decision is proving difficult, encourage the patient to consider what help the individual might need (e.g. opportunity to talk things through with other people, coming with them to an appointment) and how this might be provided |
3.3 | Social support (emotional) | Ask the patient to consider taking a partner or friend with them to their surgical appointment | |
4.2 | Information about antecedents | Review previous decisions and personal resources used to come to difficult decisions in general | |
4.3 | Re-attribution | For example, patient using incorrect information to bias decision-making, e.g. If the person attributes the need for BR to full recovery from cancer, reintroduce the idea that cancer is treated differently and many women choose not to have BR without compromising recovery | For example, patient using incorrect information to bias decision-making, e.g. If the person attributes the need for BR to full recovery from cancer, reintroduce the idea that cancer is treated differently and many women choose not to have BR without compromising recovery |
5.1 | Information about health consequences | Encourage patient to make full use of all information resources Direct patient to appropriate sources of information Consider the use of a decision aid | Encourage patient to make full use of all information resources Direct patient to appropriate sources of information Discuss the outcome of using a decision aid if appropriate |
5.3 | Information about social and environmental consequences | Explain that satisfaction with decision-making is higher if people carefully consider all the factors that are important to them and the probability that these can be achieved | Explain that the consequences re cancer are the same whether BR is undertaken or not Encourage patient to make the decision for her that is consistent with her values and beliefs set out in PEGASUS |
5.4 | Monitoring of emotional consequences | Encourage patient to reflect on how they would feel in the future if they take time to consider all the reasons that BR might be important for them and the likely outcomes | Encourage patient to reflect on how they would feel in the future if they make a decision which is concordant with the preferences and expectations they have about BR |
5.5 | Anticipated regret | Ask the person to assess the degree of regret they will feel if they believe that they did not consider all the factors important for them in considering BR | Ask the person to assess the degree of regret they will feel if they believe that they made a decision that was inconsistent with the all the factors important for them in considering BR or failed to make a decision |
5.6 | Information about emotional consequences | Explain that physical changes do not necessarily result in psychosocial changes (e.g. ‘feel a whole woman’). Taking time to elicit all the factors that are important for an individual is an important part of the process of coming to a decision and likely to result in higher satisfaction with the final decision made | Explain that physical changes do not necessarily result in psychosocial changes (e.g. ‘feel a whole woman’). Making a decision which is concordant with the preferences and expectations they have about BR is likely to result in higher satisfaction with the final decision made whether or not the final choice is to have BR or not |
6.1 | Demonstration of the behaviour | Use video example or case histories to model how different women have different priorities in considering the factors important in considering BR | Use video example or case histories to model women making different decisions about BR |
6.2 | Social comparison | Draw attention to the fact that women have different priorities and expectations in coming to a decision about whether to have BR | Draw attention to the fact that women make different decisions about whether or not to have BR |
6.3 | Information about others’ approval | Use case histories to illustrate the reaction of other people to the factors people consider important in weighing up whether to have BR | Use case histories to illustrate the reaction of other people to different decisions that patients make (NB: partners may be relieved that further surgery is being avoided) |
7.1 | Prompts/cues | Discuss the time and place that the patient may choose to review the factors important in decisions about BR and ? discuss with another person | Consider making a further appointment f the patient is unable to reach a decision |
9.1 | Credible source | Use of examples such as Angelina Jolie but discuss in terms of the factors she will have considered in thinking about surgery, not the decision itself | Use of examples such as Angelina Jolie but point out that other people make different choices with which they are equally satisfied |
9.2 | Pros and cons | See section 5 NB: this is pros and cons of making the decision not pros and cons of having surgery | Use the weightings for each goal on the PEGASUS sheet to help the patient identify the importance of each outcome for her and the probability of achieving this via surgery |
9.3 | Comparative imagining of future outcomes | Prompt the person to imagine and compare likely or possible outcomes following a full assessment of their individual preferences for BR for them rather than generic guidance | Prompt the person to imagine and compare likely or possible outcomes having made a fully informed decision based on their individual preferences versus generic guidance |
10.9 | Self-reward | Encourage to reward self with material (e.g. new clothes) or other valued objects if and only if they have clearly progressed decision-making, e.g. discussed with partner | |
11.2 | Reduce negative emotionsa | Advise on the use of stress management skills, e.g. relaxation, pacing of activities | |
11.3 | Conserving mental resources | Advise to consider decision-making at certain times in the week rather than constant rumination | |
12. Antecedents | |||
12.1 | Restructuring the physical environment | Encourage patient to think about a quiet time when they will not be interrupted in order to discuss decision-making with partner/friend (e.g. arrange baby sitter, or ask person specifically to come to discuss this issue) | |
12.6 | Body changes | Prompt healthy eating, relaxation and exercise as alternative ways of improving positive self concept and confidence in ability to make decisions | |
13.1 | Identification of self as role model | Inform the person that taking time to consider all the factors important to them in making a decision creates a powerful role model for others in the family and friends who may face the same challenge | Inform the person that making a decision either for or against surgery creates a powerful role model for others in the family and friends who may face the same challenge, regardless of whether BR is chosen |
13.2 | Framing/reframing | Suggest that the person might think of the process of eliciting more information about BR as reducing stress about future decision-making rather than increasing it | Suggest that the person might think of making a decision about BR as reducing stress rather than increasing it, whatever the choice made |
13.3 | Incompatible beliefs | Draw attention to any difficult decisions made in the past, e.g. change of job, relationship etc. | |
15.1 | Verbal persuasion about capability | Encourage the person that they can successfully identify and weigh up the important factors in making this decision as they did in all the other stages of the cancer journey | Encourage the patient to believe that they can make a decision that is right for them provided they think about all the reasons that underpin it and act in accordance with these factors |
15.2 | Mental rehearsal of successful performance | Advise to imagine how they will feel once the decision has been fully explored and summarised | Advise to imagine how they will feel once the decision has been made |
15.3 | Focus on past success | Advise to describe or list the occasions on which the person has had to inform themselves about making a difficult decision | Encourage patient to consider previous occasions when they made a difficult decision and the factors that assisted them |
Design of the Intervention Including Setting, Frequency and Staff Training
Step | Action |
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Stage 1: the meeting between the patient and the trained PEGASUS coach; the key componentsa | |
Step 1 | Introduce the PEGASUS intervention. 1.1. What does PEGASUS stand for? 1.2. Audit findings; unmet expectations. |
Step 2 | ‘You know you’—you are the expert on your life. |
Step 3 | Brief overview of the patient’s pathway. |
Step 4 | Explain how this session will work. 4.1. Check patient understands the purpose of the session. |
Step 5 | Elicit the patient’s surgical goals and write them down on the PEGASUS sheet. |
Step 6 | Explain the rating system and ask the patient to rate each surgical goal (from 0 -10) in regards of its importance to them. 6.1. Rating helps everyone see which goals are the most important. |
Step 7 | Elicit the patient’s psychosocial (lifestyle) goals and write them down on the PEGASUS sheet. |
Step 8 | Ask the patient to rate each psychosocial goal. |
Step 9 | Re-cap both surgical and psychosocial goals with importance ratings. 9.1. Show the patient the PEGASUS sheet and ask if there is anything they want to add. |
Step 10 | Instruct the patient to take the completed PEGASUS sheet into their consultation with the surgeon (part 2) and explain why this is important. 10.1. Take 2 photocopies (3 copies in all) of the PEGASUS sheet. Place a copy in the notes. Give a copy to the patient. 10.2. Is there anything else you want to ask? |
Stage 2: the meeting between the surgeon and patientb | |
Step 1 | Look at the completed PEGASUS sheet which contains your patients surgical and psychosocial goals and use it to facilitate a consultation that is focussed around the patients individual goals |
Step 2 | Rank (from 0 to 10) the probability of achieving each surgical goals and write this down on the PEGASUS sheet |
Step 3 | Reflect with the patient on the extent to which psychosocial goals are likely to follow. (Do not rank the probability of achieving psychosocial goals)c |
Step 4 | Use the PEGASUS sheet along with your expert knowledge and experience of breast reconstruction surgery to identify if the patient has realistic expectations and then, if necessary, take steps to address and manage any that you consider to be unrealistic. Place your PEGASUS sheet back in the patient’s notes and ensure that the patient has her copy to take away |
Step 5 | At the patient’s follow-up appointment (post-surgery) use the PEGASUS sheet once again to assist the discussion and reflect on the extent to which the surgical goals have been achieved |