Table 4 Psychometric properties of PROMs assessing quality of patient-centred cancer care

Assessment of Patient Experiences of Cancer Care (APECC) [32]

All items underwent cognitive testing with nine cancer survivors to ensure that the questions and response options were understandable and related to the concept being measured.

Confirmatory factor analysis indicated a reasonably good fit for the 10-factor model (comparative fit index = 0.93).

-

Getting needed care: α =.76

-

-

Timeliness of care: α =.62

Waiting time in physician’s office: α =.65

Information exchange: α =.92

Physicians’ affective behavior: α =.92

Physicians’ knowledge: α =.86

Interaction with nurses: α =.82

Interaction with office staff: α =.90

Health promotion: α =.88

Coordination of care: N/A

Overall rating of care: α=.87

Cancer Care Coordination Questionnaire for Patients [33]

Literature review undertaken to identify relevant issues and existing instruments and focus groups and semi-structured interviews with 24 cancer patients and carers and 29 clinicians. Draft questionnaire was reviewed by clinicians and researchers to assess face validity and clarity of wording.

Exploratory factor analysis. Principal factor method followed by a promax rotation.

-

-

Total scale: α=.88

Sample 1: 119 patients completed the survey twice -mailed 2 weeks after receipt of first survey.

-

Communication: α=.87

Navigation: α=.73

Factor loadings >.40 with the exception of one item (0.37).

Kappa for individual items ranged from 0.29 to 0.69. Four items with values less than 0.40 were eliminated.

Eigenvalues>1

Cancer Patient Information Importance and Satisfaction Tool [34]

Literature review and extensive qualitative interviews with cancer patients. Tool was field-tested with 10 cancer patients who completed tool and provided feedback about its clarity and ease of completion.

-

-

-

Information importance: α=.89

-

-

Information satisfaction: α=.92

Cancer Therapy Satisfaction Questionnaire (CTSQ) [35, 36]

Interviews with 70 oncology patients, 4 oncology nurses and 7 physicians. Focus groups with 14 oncology nurses. Content validity tested with 30 patients who completed the survey and were interviewed, followed by retesting in an additional 10 patients.

Exploratory factor analysis using oblique promax rotation.

Cancer stage (I, II, III, IV) P <0.001 for 1 subscale.

Treatment Satisfaction Questionnaire for Medication 6 correlations > .40

Expectations of therapy: α=.87

85 patients completed follow-up questionnaires one week after baseline assessment.

-

Feelings about side effects: α=.77

Intraclass correlation:

Satisfaction with therapy: α=.82

Expectations of therapy: .56

Side effects (with, without) P<0.05 for 2 subscales.

EORTC QLQ-C30 1 correlation >.40

Feelings about side effects: .77

ECOG performance status (Grade 0, 1, 2, 3) P<0.005 for 1 subscale.

Satisfaction with therapy: .75

Consumer Quality Index Breast Care (CQI-BC) [37]

Three focus groups with 27 breast cancer patients, existing Dutch questionnaires on breast care and key stakeholders’ input used for questionnaire development.

Explorative factor analysis.

-

-

Conduct of professionals during breast examination: α=.91

-

-

Conduct of general practitioner: α=.89

Conduct of nurses: α=.88

Conduct of surgeon: α=.91

Autonomy regarding treatment: α=.84

Autonomy regarding follow-up treatment: α=.93

Conduct of professionals during radiotherapy: α=.89

Information on radiotherapy: α=.89

Conduct of professionals during chemotherapy: α=.90

Information on chemotherapy: α=.85

Cooperation: α=.88

Accessibility of care: α=.68

Continuity psychosocial care: α=.83

Continuity physiotherapy: α=.82

Continuity rehabilitation: α=.80

EORTC cancer in-patient satisfaction with care measure (EORTC IN-PATSAT32) [38]

Adapted from existing patient satisfaction questionnaires (Comprehensive Assessment of Satisfaction with Care and EORTC QLQ-SAT32) [64, 65], as well as interviews with oncology specialists and cancer patients.

-

Age (less than 57 years, 57 years or more) P <0.05 for 4 subscales.

Oberst Patients’ Perception of Care Quality and Satisfaction Scale correlations (-0.21 to -0.61).

Doctors’ technical skills: α=.85−.87

113 patients recruited from one centre for follow-up approximately 2 weeks after first assessment.

Validated with Sri Lankan cancer patients (n=343) [56]

Education (less than compulsory, post-compulsory) P <0.05 for 2 subscales.

Doctors’ interpersonal skills: α=.91−.94

Doctors’ information provision: α=.90−.94

Doctors’ availability: α=.86−.91

Nurses’ technical skills: α=.90−.94

Nurses’ interpersonal skills: α=.90−.93

Intra-class correlations coefficients for the scales ranged from 0.70-0.85 and was 0.66 for the general satisfaction item.

Nurses’ information provision: α=.94−.96

Nurses’ availability: α=.83−.92

Treatment related toxicity (yes, no) P <0.05 for 7 subscales.

EORTC QLQ-C30 r<.30.

Exchange of information: Ν/Α

Other hospital staff interpersonal skills and information provision: α=.86−.90

Waiting time: α=.80−.84

Hospital access: α=.56−.71

Comfort: Ν/Α

General satisfaction: N/A

Indicators (Head & Neck Cancer) [39]

Systematically searched for recommendations in literature, performed a systematic consensus procedure based on evidence-based guidelines and sought opinions of 15 professionals and 30 patients with head and neck cancer.

-

-

-

-

-

-

Indicators (Non-small Cell Lung Cancer) [40]

Recommendations for patient-centred care extracted from clinical guidelines and conducted semi-structured interviews with 30 head and neck cancer patients and 7 patient representatives from the Dutch national association of patients with lung cancer. Two researchers translated recommendations into indicators which were considered by a panel of four researchers.

-

-

-

Access: α=.87

-

-

Follow up: α=.78

Communication and respect: N/A

Patient & family involvement: α=.85

Information: α=.78

Coordination: α=.22 (specialists) & α=.68 (oncology nurses)

Physical support: N/A

Emotional & psychosocial support: α=.67

Medical Care Questionnaire (MCQ) [41]

Literature review of existing instruments, modification (items removed, reworded, generated) of an existing instrument by an expert panel (3 medical oncologists and one oncologist in training) using a consensus procedure, instrument administered to 200 oncology outpatients and then refined.

Exploratory factor analysis using oblique rotation (Phase 3) and confirmatory factor analysis (Phase 4).

Cancer type (Breast, Genitourinary, Gynecological, Melanoma, Sarcoma, Other) P <0.05 for 3 subscales.

-

Communication: α=.69

-

-

Factor loadings >.40

Preferences: α=.84

Eigenvalues > 1

Coordination: α=.75

Modified Version of the Perceived Involvement in Care Scale (M-PICS) [42]

Literature review and consultation with pain clinicians guided augmentation and addition of items on the original Perceived Involvement in Care Scale (PICS).

Exploratory factor analysis – principal components analysis with oblique rotation.

Age P<0.01 for 1 subscale.

Barriers Questionnaire-II

Total scale: α= .87

-

Validated with Lithuanian cancer patients (n=30) [57]

Factor loadings >.40

Ethnicity (Latina; Caucasian/African- American) P<0.01 for 2 subscales.

2 correlations >.40

Health care provider information: α= .90

Mental Health Inventory

Patient information: α= .82

3 correlations <.30

Patient decision making: α= .80

Medical Outcomes Study Short-Form 12: Mental Component Scale

Health care provider facilitation: α= .80

3 correlations <.30

Medical Outcomes Study Short-Form 12: Physical Component Scale

4 correlations <.30

Patient Satisfaction Questionnaire

3 correlations >.40

Oncology Patients’ Perceptions of the Quality of Nursing Care Scale (OPPQNCS) [43]

Interviews with cancer patients about their perceptions of nursing care, items and subscales generated from this qualitative work, an expert methods consultant evaluated items for clarity and relevance and a nine-member expert rater panel consisting of 5 cancer patients, a nurse, a nurse researcher, the executive director of a patient advocacy group and a survey scientist, reviewed and reduced items.

Exploratory factor analysis – principal components analyses with promax (oblique) rotation.

-

-

Total scale: α= .99

-

Validated with Turkish cancer patients (n=54) [58]

Responsiveness: α= .99

Individualization: α= .97

Coordination: α= .87

Factor loadings >.40

Proficiency: α= .95

Pain Care Quality Survey (PainCQ) [44, 45]

Conducted 33 qualitative interviews with cancer patients in pain. Items were constructed using this qualitative work, existing tools, recommendations for item development in the literature, and consultation with a national expert in tool development. Two panels of pain and quality experts reviewed items (removed, reworded or added items). Cognitive interviews were then undertaken with 39 hospitalized cancer patients reporting pain.

Exploratory factor analysis – principal axis factoring using an oblimin rotation.

-

-

PainCQ-Interdisciplinary scale:

-

-

Partnership with healthcare team: α=.85

Comprehensive interdisciplinary pain care: α=.76

PainCQ-Nursing scale:

Being treated right: α=.95

Factor loadings >.40

Comprehensive nursing pain care: α=.77

Eigenvalues > 1

Efficacy of pain management: α=.87

PASQOC questionnaire [46]

Existing survey re-designed and content similar to other surveys. Focus group discussions with 29 patients in four centres.

Factor analysis

-

Short Form-36 (SF-36) correlations (.042 to -.161)

Total scale: α= .93

-

-

Pre-testing the questionnaire for appropriateness of the questions and length with 280 patients from 14 centres.

Factor loadings >.40 with the exception of one item (.394).

Patient-provider relationship: α=.81

Premises: α=.76

Information on diagnosis & treatment: α=.71

Information on treatment consequences: α=.87

Relationship between patient & nurse: α=.72

Patient Satisfaction with Cancer Care [47]

Item pool based on literature review and existing measures, expert feedback, group discussion and consensus.

Factor analysis – principal components analysis

-

Communication and Attitudinal Self-Efficacy – Cancer 1 correlation >.40 (sample 2).

Total scale: α= .95 and .96 (for two samples).

-

-

Factor loadings >.40

Eigenvalue >1

Perceived Physician’s Communication Style Scale [48]

Initial item pool created from literature review and 25 cancer patients’ opinions about the physician’s communication style.114 nurses assessed the content validity of items. Items pre-tested with 70 breast cancer patients.

Factor analysis using varimax procedure.

-

-

Total scale: α= .95

-

-

Factor loadings >.40

Acceptive: α=.90

Eigenvalues > 1

Patient-centered: α=.90

Attentive: α=.73

Facilitative: α=.76

Prostate Care Questionnaire for Patients (PCQ-P) [49]

Initial items developed through a literature review and interviews with patients and service providers. Semi-structured interviews with 20 prostate cancer patients who completed survey.

Exploratory principal components analysis with varimax rotation.

-

National Centre for Social Research Shortened Questionnaire

Section A: α=.80

148 (50%) patients from two hospitals completed retest survey mailed 3 weeks later.

-

Factor loadings for each section of 0.3 and higher presented in an additional file.

Sections B & C

Section B: α=.63

r <.30

Section C: α=.77

Sections D & E r >.40

Section D: α=.80

Section E: α=.68

Intraclass correlation coefficient:

Section A: .68

Section B: .57

Section C: .61

Section D: .73

Section E: .70

Identical responses to individual questions: 52.6% to 100%

QUOTE Breast Cancer [50, 51]

Based on eight focus groups with 72 breast cancer patients and concept mapping sessions with 67 breast cancer patients a pilot questionnaire was developed. Two researchers categorised and reduced the aspects of care identified.

Exploratory factor analysis (i.e., principal axis factoring) – oblique rotation.

Age (18-49, 50-65, >65 years) no difference.

-

Patient education regarding aspects related to postoperative treatment: α=.83

-

-

Factor loadings >.40 except for 0.35 loading and 6 separate items.

Services by the breast nurse: α=.89

Eigenvalues >1

Education (primary school, secondary school, college/university) no difference.

Services by the surgeon: α=.85

Patient education regarding activities at home: α=.70

Time since surgery (0-6, 6-12, >12 months) no difference.

Patient education regarding aspects related to preoperative treatment: α=.81

QUOTE^chemo[52]

Items developed via existing measure, literature review and 5 focus groups (n=33) as well as individual interviews with 5 cancer patients. 10 coders categorised the items into the seven dimensions.

Confirmatory factor analysis.

-

QUOTE^chemo Importance with:

Performance:

-

-

Factor loadings >.40

Treatment-related information: α=.92

Prognosis information: α= .72

Rehabilitation information: α= .87

Information Satisfaction Questionnaire

Coping information: α= .78

7 correlations r <.30

Interpersonal communication: α= .89

Tailored communication: α= .86

Affective communication: α= .91

Threatening Medical Situation Inventory

Importance:

7 correlations r <.30

Treatment-related information: α=.90

Impact of Event Scale:

Prognosis information: α= .76

- Intrusion 7 correlations r <.30

Rehabilitation information: α= .86

- Avoidance 7 correlations r <.30

Coping information: α= .81

Interpersonal communication: α= .90

Tailored communication: α= .81

Affective communication: α= .88

REPERES-60 [53]

Literature review and two focus groups with 30 breast cancer patients used to generate items and identify domains. Adapted existing Consumer Satisfaction Survey and developed new items based on patient focus groups and experts’ input. Test version of questionnaire tested with breast cancer patients to assess understanding and comprehensiveness of items, which led to minor alterations.

Principal components factor analysis (varimax rotation).

Age (less than 58 years, 58 years or older)

EORTC QLQ-C30 r <.30

Access to primary care: α=.88

166 (91%) patients sent retest 1 week later.

-

Factor loadings >.40

P <0.05 for 11 subscales.

Access to secondary care: α=.82

Eigenvalues >1

Education (primary and secondary, higher education)

Competence and communication skills of primary care doctors: α=.93

Item-to-item agreement:

P <0.05 for 8 subscales.

Competence of secondary care doctors: α=.94

Kappa ranged from 0.44 to ≥ 0.70

Communication skills of secondary care doctors: α=.92

Choice among different doctors: α=.87

Human qualities of doctors: α=.94

Global satisfaction: α=.74

Cover for medical expenses: α=.90

Listening abilities and information provided by doctors: α=.93

Organisation and follow-up of medical care provision: α=.87

Psychological support: α=.88

Material environment: α=.89

Satisfaction with Cancer Information Profile (SCIP) [54]

Four items derived from Satisfaction with Information About Medicines Scale (SIMS) and additional items from patient interviews.

-

-

Illness Perception Questionnaire-Revised

Satisfaction with the amount and content of information: α=.89

-

-

2 correlations r <.30

Satisfaction with the form and timing of information: α=.87

SAT-RAR [55]

Review of the literature, selection and formation of items based on relevant themes and a cancer care satisfaction questionnaire, pilot-testing of preliminary questionnaire with 10 patients to evaluate relevance, content validity and comprehensibility of items, survey reviewed by clinicians in the study.

Exploratory factorial analysis with varimax rotation followed by Confirmatory factorial analysis.

Education (at least high school completed, high school not completed)

-

Total scale: α=.86

-

-

P <0.01 in 1 subscale.

Perception of the radiotherapist or radiotherapy technicians: α=.94

Most factor loadings >.40, except 3 factor loadings >.30

Marital status (married, not married)

Global satisfaction: α=.80

P <0.01 in 1 subscale.

Treatment experience: α=.75

Work status (employed, not employed)

P <0.01 in 2 subscales.

Type of radiotherapy (respiratory gating, no respiratory gating)

P <0.01 in 2 subscales.