Table 1 Sample characteristics of studies that have developed PROMs assessing quality of patient-centred cancer care

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

QUOTE^chemo[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