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.
|
Cancer Therapy Satisfaction Questionnaire (CTSQ) [35,36]
|
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%
|
-
|
Pain Care Quality Survey (PainCQ) [44,45]
|
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
|
QUOTE Breast Cancer [50,51]
|
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 |