Table 1 List and description of quantitative data collection questionnaires
Outcomes | Questionnaires | Dimensions | Number of items | Response scale | Time of measurements | Question numbers in appendices |
|---|---|---|---|---|---|---|
Patient reported experience | Patient’s care experience questionnaire a | • Site of diagnosed cancer; cancer stage at time of diagnosis; type of treatment; date of start of treatments • Consultation in oncogenetics, genetic status, time of disclosure of results of genetic testing, surgery to reduce the risk of developing cancer, time of preventive surgery • Evaluation of information communicated by medical team, support of friends and family. | 25 items | Varied | T0 | Additional file 4: T0: 41 to 67 |
|  | Sociodemographic questionnaire a | • Gender, age, country of origin, region, number of people in the household, number of dependents, family composition, level of education, perception of financial situation. | 18 items | Varied | T0 | Additional file 4: T0: 22 to 39 |
|  | Patient’s experience with PAs questionnaire a | • Topics discussed, benefits and perceived contribution of PA • Expectations of patients that did not benefit from PA accompaniment | 14 items | Varied | T0, T1, T2 | Additional file 4: T0: 69 to 100 T1: same as T0 T2: 102 to 127 |
|  | Treatment adherence questionnaire [47] | • Intention of receiving treatments • Obstacles to treatment | 8 items | 5 point Likert scale (1 = strongly disagree and 5 = strongly agree) | T0, T1, T2 | Additional file 4: T0: 148 to 159 T1: same as T0 T2: same as T0 |
|  | CASE [48] | Ability to cope with cancer • Understand and participate in care • Maintain positive attitude • Seek and obtain information | 12 items | 4 point Likert scale (1 = strongly disagree and 4 = strongly agree) | T0, T1, T2 | Additional file 4: T0: 129 to 140 T1: same as T0 T2: same as T0 |
|  | Kessler Psychological Distress Scale (K6) [49] | • on emotional states | 6 items | 5 point Likert scale (1 = Always and 5 = never) | T0, T1, T2 | Additional file 4: T0: 141 to 146 T1: same as T0 T2: same as T0 |
PA reported experience | PAs’ care experience questionnaire a | • Site of diagnosed cancer; time of diagnostic; type of treatment; date of start of treatments • Consultation in oncogenetics, genetic status, time of disclosure of results of genetic testing, surgery to reduce the risk of developing cancer, time of preventive surgery • Evaluation of information communicated by medical team, support of friends and family. | 25 items | Varied | T0 | Additional file 5: T0: 39 to 60 |
|  | Sociodemographic questionnairev | • Gender, age, country of origin, region, number of people in the household, number of dependents, household situation, level of education, perception of financial situation. | 18 items | Varied | T0 | Additional file 5: T0: 19 to 36 |
|  | Previous personal experience with PAs questionnairea | • Presence of pairing or not with a PA • Topics discussed, benefits and perceived contribution of PA • Expectations of patients that did not benefit from PA accompaniment are also evaluated | 14 items | Varied | T0 | Additional file 5: T0: 62 to 82 |
|  | Kessler Psychological Distress Scale (K6) [49] | • Psychological distress | 6 items | 5 point Likert scale (1 = Always and 5 = never) | T0, T2 | Additional file 5: T0: 84 to 89 T2: idem to T0 |
|  | Review of PA experience with patient questionnairea | • Support of clinical team • Quality of tools used • Useful information to effectively carry out their role as PA • Communication with the clinical team • Role in the clinical team • Perceived impact of their intervention on the patient and on the PA themself. | 140 items | Varied | T2 | Additional file 5: T2: 91 to 241 |
Descriptive data of each meeting | Logbooka | • PA name • Patient name • Date, time, duration • Context of the request • People present during the meeting • Context of the meeting • Step of patient trajectory • Topics discussed • Difficulties and questions • Feedback from the clinical team | 28 items | Varied | After each meeting | Additional file 6: 3 to 42 |
Health professional reported experience | Adaptation of the Collaborative Practice Assessment Tool (CPAT) [50] | • Perceptions of concepts of collaborative practices, mission and goals of the teams (4 domains out of 8 domains retained and one created for the project) • General Relationships • Team leadership • General role responsibilities, autonomy • Communication and information exchange • Practice evaluationa | 26 items retained out of 56 | 7 point Likert scale (1 = strongly disagree and 7 = strongly agree) | T0, T2 | Additional file 7: T0: 22 to 47 T2: 103 to 128 |
|  | Group Innovation Inventory [51] | • Innovative culture (adaptation) | 7 items retained out of 36 | 7 point Likert scale (1 = strongly disagree and 7 = strongly agree) | T0, T2 | Additional file 7: T0: 48 to 54 T2: 129 to 135 |
|  | Readiness To Partner With Patient and Family Advisers - Patient and FamilyEngagement in the Surgical Environment Module. Content last reviewed May 2017. Agency for Healthcare Research and Quality,Rockville, MD. https://www.ahrq.gov/hai/tools/ambulatory-surgery/sections/implementation/training-tools/readiness.htm [50] | • Perception of health professionals concerning the partnership with patients (treatment plan, decision making) • Perception of health professionals concerning the role of PAs | 11 items retained out of 18 | 5 point Likert scale (1 = strongly disagree and 5 = strongly agree) | T0, T2 | Additional file 7: T0: 64 to 74 T2:145 to 155 |
|  | Questionnaire on perception towards the integration of PA in their teama | • Perception of the possibility of integrating PAs into the care team and eventual obstacles | 5 items | Varied | T0, T2 | Additional file 7: T0: 56 to 62 et 75 T2: 137 to 143 et 156 |
| Â | Readiness To Partner With Patient and Family Advisers - Patient and Family Engagement in the Surgical Environment Module.Content last reviewed May 2017. Agency for Healthcare Research and Quality, Rockville, MD. https://www.ahrq.gov/hai/tools/ambulatorysurgery/sections/implementation/training-tools/readiness.htmla | Â | Â | Varied | T0 | Additional file 7: T0: 80 to 97 |