Background
Methods
Search strategy and selection criteria
Study and sample characteristics
Items and subscales of measures
1) Respect for patients’ values, preferences, and expressed needs
2) Coordinated and integrated care
3) Provide information, communication, and education
4) Physical comfort
5) Emotional support
6) Involvement of family and friends
Psychometric properties of measures
Internal consistency
Test-retest reliability
Face validity
Content validity
Construct validity
Cross-cultural adaptation
Coding process
Results
Study eligibility
Setting and Sample Characteristics
Measure | Sample size | Consent rate | Eligibility criteria | Setting & country | Socio-demographics | Cancer type, stage/ diagnosis | Cancer treatments |
---|---|---|---|---|---|---|---|
Assessment of Patient Experiences of Cancer Care (APECC) [32] | 623 | 69.2% participation rate. | Read English, diagnosed with leukaemia or bladder or colorectal cancer between June 1999-May 2001 (i.e., 2-5 years before study enrolment), at least 20 years old at diagnosis, have received cancer treatment, have the cancer of interest as their first cancer diagnosis, not have any other cancer between their initial diagnosis and the start of the study, have no objections from their physician of record to their participation. | Cancer Prevention Institute of California’s cancer registry, USA. | 43.3% women | Colorectal cancer: 59.6% | 38.7% surgery only |
49.2% response rate. | 37.7% aged 50-64 years | Bladder cancer: 26.2% | 35.1% surgery plus chemotherapy or radiation | ||||
20.3% college degree | Leukaemia: 14.3% | ||||||
71.5% married/defacto | |||||||
73.8% Non-Hispanic white | 84.4% in remission. | 12.3% surgery plus chemotherapy and radiation | |||||
83.6% private health insurance | Mean of 3.5 years since diagnosis. | 13.9% chemotherapy with or without radiation but no surgery | |||||
Cancer Care Coordination Questionnaire for Patients [33] | 686 | - | Sample 1 (n = 245): Patients were in follow-up for any cancer that had been treated between 3 to 12 months previously, had sufficient English and were not cognitively impaired and were not receiving end of life care. | Sample 1: Six centres (2 metropolitan & 4 regional). | Total participants: | Colorectal: 82.5% | 96% surgery |
46.8% women | Gynaecological: 7.6% | 40.5% chemotherapy | |||||
Mean age: 66.1 years | Breast: 2.6% | 12.2% radiotherapy | |||||
66.9% married/defacto | Lung/mesothelioma: 1.3% | 3.9% hormone therapy | |||||
Sample 2: 22 public and private hospitals in metropolitan and regional centres. | 35.3% tertiary degree or diploma | Other/multiple sites: 4.7% | |||||
23.5% employed full-time | Primary cancer: 91.8% | ||||||
Recurrent cancer: 3.8% | |||||||
Sample 2 (n = 441): Patients with a newly diagnosed colorectal cancer undergoing initial surgical treatment. | Australia | ||||||
Cancer Patient Information Importance and Satisfaction Tool [34] | 540 | - | - | Ambulatory setting of regional cancer centre, Canada. | 53% women | Breast: 19.1% | - |
Mean age: 60.9 years | Haematological: 12.5% | ||||||
Genitourinary: 12.5% | |||||||
Skin: 11.5% | |||||||
Gastrointestinal: 11.5% | |||||||
Head and neck: 11.3% | |||||||
Gynecologic: 11.2% | |||||||
Lung: 10.4% | |||||||
21.3% diagnosed in last year, 48.3% between 2-5 years ago. | |||||||
361 | - | Provided written informed consent, aged 18 years or older, read and write in English, available for follow-up evaluation, actively receiving more than one cycle of first- or second-line chemo, biological or hormonal therapy for early or advanced cancer, mentally and physically capable of participation. | 14 community clinical practices, USA. | 63.2% women | Breast: 37.9% | First-line of therapy: 48.8% | |
Mean age: 60.7 years | Colorectal: 33.5% | ||||||
90.9% white | Lung: 25.2% | Second-line of therapy: 28.0% | |||||
16.3% college/university degree | Melanoma: 3.3% | ||||||
Stage I: 6.1% | Adjuvant: 23.3% | ||||||
Stage II: 25.2% | |||||||
Stage III: 24.9% | |||||||
Stage IV: 43.8% | |||||||
Consumer Quality Index Breast Care (CQI-BC) [37] | 731 | 63% | Older than 18 years, having received breast care in the last 24 months, not being approached in the past for CQI surveys. | Selected from claims data of four health insurance companies, The Netherlands. | 99.7% women | Breast cancer: 57% | - |
30% aged between 55 and 64 years | Benign breast disorder: 38% | ||||||
Breast carcinoma in situ: 5% | |||||||
- | |||||||
EORTC cancer in-patient satisfaction with care measure (EORTC IN-PATSAT32) [38] | 647 | 84.9% | Diagnosed with cancer, aged 18 years or older, hospitalized for at least three days, mentally able to complete questionnaire. | Surgery or medical oncology wards in hospitals, Belgium, France, Germany, Italy, Poland, Spain, Sweden, Taiwan, United Kingdom. | 59% women | Breast: 35.1% | Current or planned treatment: |
Median age: 57 years | Gastro-intestinal: 17.2% | 55% surgery | |||||
21% university educated | Gynaecologic: 10% | ||||||
73.6% married/defacto | Head and neck: 7.3% | 40.8% chemotherapy | |||||
40.5% full time employed | Genito-urinary: 7.1% | 3.2% surgery and chemotherapy | |||||
Haematological: 6.5% | |||||||
Respiratory: 5.6% | 0.9% other | ||||||
Bone: 2.8% | |||||||
Brain: 1.5% | |||||||
Melanoma: 0.8% | |||||||
Other: 6.2% | |||||||
73.9% local/loco-regional | |||||||
26% metastatic | |||||||
Median of 15 weeks since diagnosis. | |||||||
Indicators (Head & Neck Cancer) [39] | 158 | 84% | Patients with head and neck cancer newly diagnosed between May to December 2003 | Selected from clinic lists at a university hospital, The Netherlands | 27% women | Head & neck cancer. | First treatment: |
Mean age: 62 years | Larynx and hypharynx: 38% | Operation: 56% | |||||
23% highly educated | Cavity of the mouth: 36% | Radiotherapy: 37% | |||||
Other: 26% | Chemotherapy: 7% | ||||||
- | |||||||
Indicators (Non-small Cell Lung Cancer) [40] | 100 | 76% | Patients newly diagnosed with non-small cell lung cancer between September 2004 and February 2005. | 6 hospitals, The Netherlands. | 34% women | Non-small cell lung cancer. | - |
Mean age: 66 years | Stage IV: 24% | ||||||
Medical Care Questionnaire (MCQ) [41] | Phase | Phase 3: | Adult patients from all tumor groups attending the Medical Oncology Unit, could read and understand English, were not exhibiting overt cognitive dysfunction or signs of distress. | A regional hospital, England. | Phase 3: | Phase 3: | - |
3: 200 | 70% | 81% women | Gynecological: 38% | ||||
Phase 4: 477 | Phase 4: 79.6% | 42% aged 45-59 years | Breast: 26.5% | ||||
74% married/de facto | Genitourinary: 16.5% | ||||||
13% employed full time | Sarcoma: 5.5% | ||||||
Gastrointestinal: 4.5% | |||||||
Phase 4: | Melanoma: 1% | ||||||
74.2% women | Other: 8% | ||||||
40.9% aged 45-59 years | |||||||
75.1% married/de facto | Phase 4: | ||||||
44.2% employed full time | Gynecological: 33.8% | ||||||
Breast: 23.5% | |||||||
Genitourinary: 21.4% | |||||||
Melanoma: 8.4% | |||||||
Sarcoma: 7.5% | |||||||
Other: 5.5% | |||||||
- | |||||||
Modified Version of the Perceived Involvement in Care Scale (M-PICS) [42] | 87 | 74% | Females aged 18 years or older, confirmed diagnosis of breast cancer, reported pain of at least moderate intensity (score ≥4 on the Brief Pain Inventory’s Worst Pain Intensity item) over prior two weeks, absence of any gross cognitive impairment, literate in English or Spanish. | Four hospital-based outpatient oncology clinics and a private hospital-affiliated oncology practice, USA. | 100% women | Breast cancer. | 89.7% chemotherapy |
Mean age: 50.4 years | Stage I: 12.6% | 43.7% radiation therapy | |||||
31% Caucasian | Stage II: 24.1% | ||||||
50.6% married/partnered | Stage III: 13.8% | ||||||
64.5% at least 13 years education | Stage IV: 49.4% | ||||||
26.2% employed | |||||||
Oncology Patients’ Perceptions of the Quality of Nursing Care Scale (OPPQNCS) [43] | 436 | - | 18 years or older, registered with the receptionist on the days of data collection, had received cancer nursing care in the clinic or hospital, not extremely ill or confused. | A haematology-oncology clinic, USA. | 66% women | Breast: 40% | In active treatment |
Mean age: 54.8 years | Melanoma: 9% | ||||||
93% white | Lung: 6% | ||||||
81% more than high school education | Renal cell: 4% | ||||||
Squamous cell: 4% | |||||||
Prostate: 3% | |||||||
Other: <3% | |||||||
- | |||||||
109 | - | 18+ years of age, inpatients on one of the designated units with an expected stay of more than 24 hours, diagnosis of cancer, surgery for cancer, a suspected cancer diagnosis or a hematological disorder and a positive response to screening regarding the presence of pain, cognitively and physically able to complete survey. | Hospitals in three geographically diverse settings with medical or surgical oncology units, USA. | 58.7% women | Leukaemia/lymphoma: 15.6% | Reason for hospitalization: | |
Mean age: 53.1 years | |||||||
88.1% non-Hispanic white | Uterine/Cervical/Ovarian: 11.9% | Surgery: 40.4% | |||||
Supportive care and management of complications: 45.9% | |||||||
66.1% married/partnered | Prostate and genitourinary: 11.9% | ||||||
25.7% college graduate | |||||||
Colorectal: 10.1% | Treatment of cancer: 8.3% | ||||||
Lung: 7.3% | |||||||
Gastrointestinal: 7.3% | Other: 5.5% | ||||||
Breast: 6.4% | |||||||
Other cancers: 22.0% | |||||||
Non-cancer diagnosis: 7.3% | |||||||
34.9% local or regional | |||||||
41.3% advanced cancer | |||||||
PASQOC questionnaire [46] | 2659 | 78.6% | Aged 18 years or older, the presence of any cancer suitable for outpatient treatment, read and write in German, mentally and physically able to complete questionnaire. | 24 institutions including 15 private group practices, 6 single oncologist-led practices, 3 hospital day clinics, Germany. | 56% women | Breast: 22.9% | 80.9% chemotherapy |
Mean age: 61.7 years | Intestine: 19.8% | 58.0% surgery | |||||
8.7% employed full-time | Lymphoma: 15.2% | ||||||
Haematological: 12.3% | |||||||
Other: 29.8% | |||||||
58.2% distant metastases | |||||||
61.9% diagnosed within last 3 years | |||||||
Patient Satisfaction with Cancer Care [47] | 891 | - | Abnormal breast, cervical, colorectal and prostate cancer test finding or a new diagnosis of these cancers without any prior history of cancer treatment other than non-melanoma skin cancer, fluent in English. | Multiple patient Navigation Research Program recruitment sites (eg, clinics or hospitals), within nine largely racial/ethnic minority and low-income communities, USA. | 81.3% women | Breast: 64.2% | - |
Mean age: 51.4 years | Cervix: 10.8% | ||||||
43.2% white | Colorectal: 12.0% | ||||||
40.4% married/defacto | Prostate: 12.6% | ||||||
12.9% college graduate | Multiple sites: 0.5% | ||||||
29.9% full-time employed | |||||||
- | |||||||
Perceived Physician’s Communication Style Scale [48] | 147 | 74% | Patients with cancer who were aware of their cancer diagnosis, met their doctor more than once and did not have a debilitating condition. | A hospital, Japan. | 66.7% women | Breast cancer: 50.3% | - |
Mean age: 57.6 years | Gastric cancer: 30.6% | ||||||
20.4% university educated | Lung cancer: 15.0% | ||||||
Other cancer: 4.1% | |||||||
55.1% disease free | |||||||
44.9% recurrent or metastatic disease | |||||||
Prostate Care Questionnaire for Patients (PCQ-P) [49] | 865 | 69.2% | Patients diagnosed with, or treated for prostate cancer within the past two years, who were not too ill to participate. | 5 hospitals, England | 100% male | Prostate cancer | - |
40.5% aged 65-74 years | |||||||
92.8% white | - | ||||||
21.3% employed | |||||||
276 | 43% | Experience with any type of surgery for breast cancer 3 -15 months before the start of the study, age older than 17 years and mental competence as judged by the breast nurse. | 5 hospitals, The Netherlands. | 100% women | Breast cancer | 54% lumpectomy | |
Mean age: 57 years | 52% (modified) radical mastectomy | ||||||
32% college/university educated | 16% diagnosed 3-6 months ago, 47% 7-12 months ago, 34% 13-18 months ago, 3% more than 18 months ago. | 50% radiotherapy | |||||
38% chemotherapy | |||||||
QUOTEchemo[52] | 345 | 59.3% | 60 most recent patients from each hospital who were new to chemotherapy, aged 18 years or older, able to read Dutch. | Hospital records from 10 hospitals, The Netherlands. | 67% women | Breast: 47.2% | 16.2% chemotherapy only |
Mean age: 55.7 years | Digestive-gastrointestinal: 21.5% | ||||||
79% lived with partner | 74.5% chemotherapy & surgery | ||||||
28% highly educated | Haematologic: 10.6% Lung: 9.7% | ||||||
52.8% employed | Gynaecological: 6.2% Urologic: 2.9% | 45.5% chemotherapy & radiotherapy | |||||
Other: 1.8% | 21.1% chemotherapy & hormone replacement therapy | ||||||
Mean of 11.5 months since diagnosis. | 6.2% chemotherapy & immunotherapy | ||||||
74.8% curative intent | |||||||
25.2% palliative intent | |||||||
REPERES-60 [53] | 820 | 84% | A first diagnosis of invasive non-metastatic breast cancer, at least two contacts for cancer with one of the health professionals in one of the two regions between diagnosis and the first year of follow-up, signed informed consent. | Public and private cancer centres in two regions, France. | 100% women | Breast cancer. | - |
Mean age: 58 years | |||||||
55.1% living with spouse/partner | - | ||||||
15.7% higher education 43.7% employed | |||||||
Satisfaction with Cancer Information Profile (SCIP) [54] | 82 | 76% | Newly diagnosed patients with head and neck cancer. | 4 hospitals, England. | 34% women | Head and neck cancer. Most common sites tongue and laryngeal/glottis | Planned treatments: |
27% surgery only | |||||||
26% radiotherapy only | |||||||
31% surgery and radiotherapy | |||||||
Mean age: 60 years | Stages I and II: approximately 50%; Stages III and IV: approximately 50% | 11% radiotherapy and chemotherapy | |||||
92% white 61% married/de facto | 5% surgery, radiotherapy and chemotherapy | ||||||
SAT-RAR [55] | 297 | 55.8% | Aged > 18 years, curative irradiation and satisfactory general status (<3 on WHO performance scale). | 16 centers, France. | Breast cancer (n = 98): | Non-small cell lung cancer. | 100% radiotherapy |
Mean age: 56 years | Respiratory gating: 44% (breast cancer) & 67% (lung cancer) | ||||||
100% women | Breast cancer. | ||||||
Mean days hospitalized: 4.7 days | - | ||||||
Non-small cell lung cancer (n = 199): | 1 or more acute toxicity during treatment: 96% (breast cancer) & 86% (lung cancer) | ||||||
Mean age: 65 years 15% women | |||||||
Mean days hospitalized: 3.8 days Mean number of hospitalizations: 7.8 |
Patient-centred care instruments
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. |
Measure | IOM patient-centred care dimensions | |||||
---|---|---|---|---|---|---|
Emotional support | Family & friends | Information & communication | Integrated & coordinated care | Physical comfort | Respectful to patients’ values | |
APECC [32] | √ | √ | √ | √ | ||
Cancer Care Coordination Questionnaire for Patients [33] | √ | √ | √ | √ | ||
Cancer Patient Information Importance and Satisfaction Tool [34] | √ | √ | √ | |||
√ | ||||||
CQI-BC [37] | √ | √ | √ | √ | ||
EORTC IN-PATSAT32 [38] | √ | √ | √ | √ | √ | |
Indicators (Head & Neck Cancer) [39] | √ | √ | √ | |||
Indicators (Non-small Cell Lung Cancer) [40] | √ | √ | √ | √ | √ | √ |
MCQ [41] | √ | √ | √ | |||
M-PICS [42] | √ | √ | ||||
OPPQNCS [43] | √ | √ | √ | √ | √ | |
√ | √ | √ | √ | √ | ||
PASQOC questionnaire [46] | √ | √ | ||||
Patient Satisfaction with Cancer Care [47] | √ | √ | √ | |||
Perceived Physician’s Communication Style Scale [48] | √ | √ | √ | |||
PCQ-P [49] | √ | √ | √ | √ | ||
√ | √ | √ | ||||
QUOTEchemo[52] | √ | √ | √ | √ | √ | |
REPERES-60 [53] | √ | √ | √ | √ | ||
SCIP [54] | √ | |||||
SAT-RAR [55] | √ | √ | √ |
Measure | Face validity/content validity | Construct validity | Internal consistency | Test-retest reliability | Cross-cultural adaptation | ||
---|---|---|---|---|---|---|---|
Factor analysis | Known groups | Existing measure | |||||
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 | |||||||
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] | - | 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 | ||||||
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% | |||||||
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 | ||||||
QUOTEchemo[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. | - | QUOTEchemo 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. |
Measure | Face/content validity | Construct validity | Internal consistency | Test-retest reliability | Cross-cultural adaptation | ||
---|---|---|---|---|---|---|---|
Factor analysis | Known groups | Existing measure | |||||
APECC [32] | √ | ||||||
Cancer Care Coordination Questionnaire for Patients [33] | √ | √ | √ | ||||
Cancer Patient Information Importance and Satisfaction Tool [34] | |||||||
√ | √ | √ | √ | ||||
CQI-BC [37] | √ | √ | |||||
EORTC IN-PATSAT32 [38] | √ | √ | √ | √ | |||
Indicators (Head & Neck Cancer) [39] | √ | ||||||
Indicators (Non-small Cell Lung Cancer) [40] | √ | ||||||
MCQ [41] | √ | √ | √ | ||||
M-PICS [42] | √ | √ | √ | √ | √ | ||
OPPQNCS [43] | √ | √ | √ | √ | |||
√ | √ | ||||||
PASQOC questionnaire [46] | √ | √ | √ | ||||
Patient Satisfaction with Cancer Care [47] | √ | √ | √ | ||||
Perceived Physician’s Communication Style Scale [48] | √ | √ | √ | ||||
PCQ-P [49] | √ | √ | √ | ||||
√ | √ | ||||||
QUOTEchemo[52] | √ | √ | √ | ||||
REPERES-60 [53] | √ | √ | √ | √ | |||
SCIP [54] | √ | ||||||
SAT-RAR [55] | √ | √ | √ | √ |