Table 2 Measurement features of PROMs and included IOM-endorsed patient-centred care dimensions
Measure | Satisfaction/experience | Number of items | Response scale | Subscales | IOM patient-centred dimensions |
|---|---|---|---|---|---|
Assessment of Patient Experiences of Cancer Care (APECC) [32] | Experiences | 33 | Not a problem, A small problem, A big problem. | Getting needed care | Emotional support |
Timeliness of care | Information & communication | ||||
Never, Sometimes, Usually, Always. | Waiting time in physician’s office | Integrated & coordinated care | |||
Information exchange | Respectful to patients’ values | ||||
Physicians’ affective behavior | |||||
Physicians’ knowledge | |||||
On time, < 15 minutes, 16-30 minutes, 31-45 minutes, > 45 minutes. | Interaction with nurses | ||||
Interaction with office staff | |||||
Health promotion | |||||
Coordination of care | |||||
Poor, Fair, Good, Very good, Excellent. | Overall rating of care | ||||
Yes definitely, Yes somewhat, No. | |||||
0 (worst doctor possible) to 10 (best doctor possible) | |||||
Definitely yes, Probably yes, Not sure, Probably not, Definitely not. | |||||
Cancer Care Coordination Questionnaire for Patients [33] | Experiences | 20 | Strongly disagree, Disagree, Neutral, Agree, Strongly agree. | Communication | Emotional support |
Navigation | Family & friends | ||||
Never, Rarely, Sometimes, Frequently, Always. | Information & communication | ||||
Integrated & coordinated care | |||||
Cancer Patient Information Importance and Satisfaction Tool [34] | Satisfaction | 24 | 5 point scale from Not important (0) to Very important (4). | Information importance | Emotional support |
Information satisfaction | Information & communication | ||||
Physical comfort | |||||
5 point scale from Not satisfied (0) to Very satisfied (4). | |||||
Satisfaction | 16 | 5 point scale with 1 representing the worst response and 5 representing the best response. | Expectation of therapy | Respectful to patients’ values | |
Feelings about side effects | |||||
Satisfaction with therapy | |||||
Consumer Quality Index Breast Care (CQI-BC) [37] | Experiences | 152 (118 items related to patients’ experiences) | Never, Sometimes, Usually, Always. | Conduct of professionals during breast examination | Emotional support |
Information & communication | |||||
Yes, No. | Conduct of general practitioner | Integrated & coordinated care | |||
Conduct of nurses | Respectful to patients’ values | ||||
A big problem, A small problem, No problem. | Conduct of surgeon | ||||
Autonomy regarding treatment | |||||
Autonomy regarding follow-up treatment | |||||
Conduct of professionals during radiotherapy | |||||
Information on radiotherapy | |||||
Conduct of professionals during chemotherapy | |||||
Information on chemotherapy | |||||
Cooperation | |||||
Accessibility of care | |||||
Continuity psychosocial care | |||||
Continuity physiotherapy | |||||
Continuity rehabilitation | |||||
EORTC cancer in-patient satisfaction with care measure (EORTC IN-PATSAT32) [38] | Satisfaction | 32 | Poor, Fair, Good, Very good, Excellent. | Doctors’ technical skills | Emotional support |
Doctors’ interpersonal skills | Information & communication | ||||
Doctors’ information provision | Integrated & coordinated care | ||||
Doctors’ availability | Physical comfort | ||||
Nurses’ technical skills | Respectful to patients’ values | ||||
Nurses’ interpersonal skills | |||||
Nurses’ information provision | |||||
Nurses’ availability | |||||
Exchange of information | |||||
Other hospital staff interpersonal skills and information provision | |||||
Waiting time | |||||
Hospital access | |||||
Comfort | |||||
General | |||||
satisfaction | |||||
Indicators (Head & Neck Cancer) [39] | Experiences | 23 specific indicators for patients | - | Patient-oriented quality of care | Emotional support |
Organisational quality of care | Information & communication | ||||
Medical/technical quality of care | Integrated & coordinated care | ||||
Indicators (Non-small Cell Lung Cancer) [40] | Experiences | 56 | 1 = Not done, 2 = Done, but inadequately, 3 = Done adequately, 4 = Done excellently. | Access | Emotional support |
Follow up | Family & friends | ||||
Communication and respect | Information & communication | ||||
Patient & family involvement | Integrated & coordinated care | ||||
Yes, No | Information | Physical comfort | |||
Coordination | Respectful to patients’ values | ||||
Physical support | |||||
Emotional & psychosocial support | |||||
Medical Care Questionnaire (MCQ) [41] | Experiences | 15 | - | Communication | Emotional support |
Preferences | Integrated & coordinated care | ||||
Coordination | Respectful to patients’ values | ||||
Modified Version of the Perceived Involvement in Care Scale (M-PICS) [42] | Experiences | 20 | 1 = All the time to 5 = Never. | Health care provider information | Information & communication |
Patient information | Respectful to patients’ values | ||||
Patient decision making | |||||
Health care provider facilitation | |||||
Oncology Patients’ Perceptions of the Quality of Nursing Care Scale (OPPQNCS) [43] | Experiences | 40 (and 18-item short form created) | 1 = Never to 6 = Always, Didn’t matter, Don’t know. | Responsiveness | Emotional support |
Individualization | Family & friends | ||||
Coordination | Information & communication | ||||
Proficiency | Integrated & coordinated care | ||||
Respectful to patients’ values | |||||
Experiences | 33 | 1 = Strongly disagree to 6 = Strongly agree. | PainCQ-Interdisciplinary scale: | Family & friends | |
Partnership with healthcare team | Information & communication | ||||
Comprehensive interdisciplinary pain care | Integrated & coordinated care | ||||
Physical comfort | |||||
PainCQ-Nursing scale: | Respectful to patients’ values | ||||
Being treated right | |||||
Comprehensive nursing pain care | |||||
Efficacy of pain management | |||||
PASQOC questionnaire [46] | Satisfaction | 120 | Nominal or ordinal scales and some interval scales | 5 dimensions reported | Information & communication |
Patient-provider relationship | Respectful to patients’ values | ||||
Premises | |||||
Information on diagnosis & treatment | |||||
Information on treatment consequences | |||||
Relationship between patient & nurse | |||||
Patient Satisfaction with Cancer Care [47] | Satisfaction | 18 | 1 = Strongly Agree to 5 = Strongly Disagree | 1 component structure – satisfaction with cancer care | Information & communication |
Integrated & coordinated care | |||||
Respectful to patients’ values | |||||
Perceived Physician’s Communication Style Scale [48] | Experiences | 27 | 1 = Strongly Disagree, 3 = Neutral, 5 = Strongly Agree. | Acceptive | Emotional support |
Patient-centered | Information & communication | ||||
Attentive | Respectful to patients’ values | ||||
Facilitative | |||||
Prostate Care Questionnaire for Patients (PCQ-P) [49] | Experiences | 106 (Sections A-E). | Various scales – please see reference [63] | Information from additional file 1 | Information & communication |
Section A: GP visits and referral | Integrated & coordinated care | ||||
Explanation | Physical comfort | ||||
Experience of referral | Respectful to patients’ values | ||||
Taking the problem seriously | |||||
Section B: Tests at the hospital | |||||
Explanation & support | |||||
Quality of care | |||||
Appointment | |||||
Section C: Diagnosis and treatment decision | |||||
Explanation & support | |||||
Making treatment decision | |||||
Getting the diagnosis | |||||
Length of wait | |||||
Section D: Treatment and discharge | |||||
Preparation for discharge | |||||
Treatment | |||||
Information | |||||
Section E: Monitoring | |||||
Explanation & reassurance | |||||
Advice | |||||
Choice | |||||
Experiences | 33 | Performance: | Patient education regarding aspects related to postoperative treatment | Information & communication | |
Never, Sometimes, Usually, Always. | Integrated & coordinated care | ||||
Services by the breast nurse | Respectful to patients’ values | ||||
Yes, No. | Services by the surgeon | ||||
Patient education regarding activities at home | |||||
Not applicable/I do not know added to a subset of items. | Patient education regarding aspects related to preoperative treatment | ||||
Importance: | |||||
Not important, Fairly important, Important, Extremely important. | |||||
QUOTEchemo[52] | Experiences | 67 | Performance: | Treatment-related information | Emotional support |
Yes, No. | Prognosis information | Family & friends | |||
Importance: | Rehabilitation information | Information & communication | |||
Coping information | Physical comfort | ||||
Not important, Fairly important, Important, Very important. | Interpersonal communication | Respectful to patients’ values | |||
Tailored communication | |||||
Affective communication | |||||
REPERES-60 [53] | Experiences | 60 | Bad, Fair, Good, Very good, Excellent. | Access to primary care | Emotional support |
Access to secondary care | Information & communication | ||||
Completely agree, Agree generally, No marked opinion, Do not really agree, Do not agree at all. | Competence and communication skills of primary care doctors | Integrated & coordinated care | |||
Competence of secondary care doctors | Respectful to patients’ values | ||||
Communication skills of secondary care doctors | |||||
Bad, Fair, Good, Very good, Excellent, Not concerned. | |||||
Choice among different doctors | |||||
Human qualities of doctors | |||||
Global satisfaction | |||||
Cover for medical expenses | |||||
Listening abilities and information provided by doctors | |||||
Organisation and follow-up of medical care provision | |||||
Psychological support | |||||
Material environment | |||||
Satisfaction with Cancer Information Profile (SCIP) [54] | Satisfaction | 21 | Too much, About right, Too little, None wanted. | Satisfaction with the amount and content of information | Information & communication |
Very satisfied, Satisfied, Neither, Dissatisfied, Very dissatisfied. | Satisfaction with the form and timing of the information received | ||||
SAT-RAR [55] | Experiences | 23 | Poor, Fair, Good, Very good, Excellent. | Perception of the radiotherapist or radiotherapy technicians | Emotional support |
Information & communication | |||||
Not at all, A little, Quite a bit, Very much. | Global satisfaction | Physical comfort | |||
Treatment experience | |||||
Poor, Moderate, Good, Very good, Excellent. | |||||
Disagree, Unsure, Tend to agree, Agree, Strongly agree. |