Background
Methods
A) Evidence-based decision aid for women with DCIS
Phase I: Development of the decision aid
Phase II: Pilot testing
Methods
Results
Commentary of focus group participants (FG) and expert reviews (ER) | Revision |
---|---|
Length/completeness | |
FG: Overwhelming amount of information | Text reduction; additional information is given as online resource linked with QR-codes for interested readers |
FG: Request for information about lifestyle interventions to influence the course of the disease | Chapter with the requested information was added |
ER: Information about overdiagnosis and overtreatment might be an information overload | Information was retained since it is relevant for treatment decisions |
ER: Inclusion of the Van-Nuys-Prognostic Index [67] was recommended | Suggestion was rejected: Index has not been validated prospectively by now [68]; applies only to recurrence risk after treatment. Instead, we listed factors associated with a higher recurrence risk (grading, size of lesion etc.). |
Information quality | |
ER: Radiation procedures changed over time in dose and application so that the external validity of study results could be low | Common problem in oncology research; the best available evidence is presented; limitation of generation |
ER: Data on re-operation rates after mastectomy were quite heterogeneous. Experts recommended removing these data | Data have been removed and a hint was replaced that valid data are not available |
Comprehensibility | |
FG: Misunderstandings of figures and text passages | Figures have been rearranged and the text passages were revised |
FG: Challenging information: dissent between positive results and poor study validity | Contradiction could not be solved: If required, the dissent can be explained by the decision coaches during the coaching |
FG: Redundant information in text and tables was annoying for women with higher education | Some women favoured the written presentation of risks, some preferred the tables. Therefore, redundancy was kept. |
Acceptability | |
FG: Breast cancer survivors valued the photos after breast cancer surgery as realistic but not aesthetic | Photos originated from the documentation of the treatment process in medical records; photos are available on demand as additional online resource |
ER: Option watchful waiting polarizes: - Patient representatives pointed out its importance - Ebm-experts disbelieved that this could be a real option due to the missing evidence and associated uncertainties | The option was retained |
ER: The term ductal ‘carcinoma’ in situ may cause anxiety |
B) Decision-coaching led by nurses
Phase I: Development of the nurse training curriculum
Phase II: Pilot testing of single components and of the entire training
Methods
Results
Revision
Pilot testing of the entire nurse training
Methods
Results
Revision
C) Structured physician encounters
Phase I: Development of a physician workshop
Phase II: Pilot testing of the physician workshop
Methods
Results
Revision
D) Testing the entire intervention with women with ductal carcinoma in situ
Methods
Recruitment
Procedures
Data collection
Data analysis
Measurement unit | |||||
---|---|---|---|---|---|
MAPPIN’SDM-Indicator | Description | Nurse/Physician (focuses the professional behaviour) | Patient (focuses the patient behaviour) | Dyad (takes both patient and professional behaviour into account) | |
Defining problem | To draw attention to an identified problem as one that requires a decision-making process | MAPPIN-Onurse1
| MAPPIN-Opatient1
| MAPPIN-Odyad1
| |
SDM key message | To state that there is more than one way to deal with the identified problem | MAPPIN-Onurse2
| MAPPIN-Opatient2
| MAPPIN-Odyad2
| |
Discussing the options | a) structure | To structure the discussion of the options in a way that is easy to understand and easy to remember. | MAPPIN-Onurse3a
| MAPPIN-Opatient3a
| MAPPIN-Odyad3a
|
b) content | To explain and discuss the pros and cons of the different options | MAPPIN-Onurse3b
| MAPPIN-Onurse3b
| MAPPIN-Odyad3b
| |
c) EBPI | To consider the criteria of evidence-based patient information | MAPPIN-Onurse3c
| MAPPIN-Opatient3c
| MAPPIN-Odyad3c
| |
Expectations and worries | To explore / discuss the patient’s expectations (ideas) and concerns (fears) about how to manage the problem | MAPPIN-Onurse4
| MAPPIN-Opatient4
| MAPPIN-Odyad4
| |
Indicate decision | To open the decision stage leading to the selection of an option | MAPPIN-Onurse5
| MAPPIN-Opatient5
| MAPPIN-Odyad5
| |
Follow up arrangements | To discuss plans for how to proceed | MAPPIN-Onurse6
| MAPPIN-Opatient6
| MAPPIN-Odyad6
| |
Preferred communication approach | To come to an agreement on the preferred mode of information exchange | MAPPIN-Onurse7
| MAPPIN-Opatient7
| MAPPIN-Odyad7
| |
Evaluation of understanding | patient | To clarify whether the patient correctly understood the information given by the nurse (clinician) | MAPPIN-Onurse8
| MAPPIN-Opatient8
| MAPPIN-Odyad8
|
nurse | To clarify whether the nurse (clinician) has correctly understood the patient’s point of view | MAPPIN-Onurse9
| MAPPIN-Opatient9
| MAPPIN-Odyad9
| |
Mean score of all indicators | MAPPIN-Onursetotal
| MAPPIN-Opatienttotal
| MAPPIN-Odyadtotal
|
Results
Sample
Professionals’ expectations and worries before the intervention
Recruitment strategy for women with ductal carcinoma in situ
Women’s expectations and acceptance of decision-coaching
Women’s knowledge
Patient involvement in treatment decision-making during decision-coaching
Indicator | Mean MAPPIN-Onurse1-9
a (Range) | Mean MAPPIN-Opatient1-9
a (Range) | Mean MAPPIN-Odyad1-9
a (Range) | ||
---|---|---|---|---|---|
1 | Defining problem | 1.86 (1–3) | 0.71 (0–1) | 2.00 (1–3) | |
2 | SDM key message | 1.00 (1–1) | 0.14 (0–1) | 1.00 (1–1) | |
3 | Discussing the options | a) structure | 1.14 (0–3) | 0.00 (0–0) | 1.14 (0–3) |
b) content | 2.71 (1–4) | 2.29 (1–4) | 2.86 (2–4) | ||
c) EBPI | 3.00 (3–3) | 1.43 (0–2) | 3.00 (3–3) | ||
4 | Expectations and worries | 2.29 (0–3) | 3.00 (3–3) | 3.00 (3–3) | |
5 | Indicate decision | 1.33 (0–2) | 1.83 (0–3) | 1.83 (0–3) | |
6 | Follow up arrangements | 1.83 (0–4) | 1.33 (0–4) | 1.83 (0–4) | |
7 | Preferred communication approach | 1.29 (0–2) | 1.14 (0–2) | 1.43 (0–2) | |
8 | Evaluation of understanding | patient | 2.14 (1–3) | 2.86 (2–4) | 3.00 (2–4) |
9 | nurse | 2.14 (1–3) | 2.00 (1–3) | 2.43 (2–3) | |
Mean Score of all indicatorsa (MAPPIN-Ototal)
| 1.90 (1.27–2.64) | 1.65 (1.22–2.42) | 2.15 (1.73–2.73) |