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Table 1 List and description of quantitative data collection questionnaires

From: The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol

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
  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    Varied T0 Additional file 7:
T0: 80 to 97
  1. a Questionnaire developed for this study by the research team