Table 1.

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

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.
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