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Are we missing the Institute of Medicine’s mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care

  • Flora Tzelepis1Email author,
  • Shiho K Rose1,
  • Robert W Sanson-Fisher1,
  • Tara Clinton-McHarg1,
  • Mariko L Carey1 and
  • Christine L Paul1
BMC Cancer201414:41

DOI: 10.1186/1471-2407-14-41

Received: 10 August 2013

Accepted: 20 January 2014

Published: 25 January 2014

Abstract

Background

The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients’ values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support—relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.

Methods

Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.

Results

Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was “information, communication and education” (19 measures). In contrast, only five measures assessed the “involvement of family and friends.” Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.

Conclusions

There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.

Keywords

Patient-centred Quality of care Patient-reported outcome measures Cancer Reliability Validity Systematic review

Background

The Institute of Medicine has defined high quality health care as the provision of appropriate services in a technically competent manner, and includes good communication, shared decision-making and is consistent with patient values and preferences [1]. Optimizing the structure (e.g., hospital resources, number of staff), processes (e.g., interactions between health care providers and patients, use of effective therapies) and outcomes (e.g., survival, quality of life) of health care services are crucial to achieving high quality care [1]. In 2001, the IOM published “Crossing the Quality Chasm” a broad framework which recommended improvements to the following six areas of healthcare in order to achieve high quality care: safety; effectiveness; timeliness; efficiency; equity; and patient-centredness [1]. Within the area of patient-centredness, the IOM also endorsed Gerteis et al’s six dimensions of patient-centred care [2] which state that care must be: 1) respectful to patients’ values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support—relieving fear and anxiety; and 6) involve family and friends [1]. The IOM’s recognition of patient-centredness as an indicator of quality acknowledges the adoption of a whole-person orientation to healthcare that goes beyond solely focusing on treatment of the disease.

A variety of sources have been used to assess the quality of care that patients receive including administrative databases, cancer registries, medical records, patient self-reported measures, physician surveys, and pharmacy and laboratory data [3]. However unlike other aspects of quality, such as efficiency, patient self-report is arguably the only way to assess constructs that relate to patient-centredness. For instance, the severity of cancer pain and levels of fatigue experienced by a patient can only reliably be assessed by the patient themselves, and self-report is widely recognised as the gold standard for such assessments [4]. The value of obtaining patient self-report data is further demonstrated by research reporting that patients’ perceptions of quality of health care have been associated with important medical and psychological outcomes, including quality of life [58], anxiety and depression [69]. Patients’ perceptions of quality of care have also been associated with factors that directly affect the effectiveness and efficiency of health care such as the under-utilisation of treatments [1012] and mistrust of the medical system [13, 14].

Patient-reported outcome measures (PROMs) that have been designed to assess the quality of patient-centred care include measures of: 1) satisfaction with care; and 2) experiences of care. Satisfaction with care measures investigate the extent to which an individual’s health care experiences met his/her expectations [15]. However, a range of factors unrelated to the actual health care that was delivered, such as differences among patients’ expectation levels, can cause variability in satisfaction ratings, which reduce their reliability for widespread and ongoing monitoring of attempts to improve patient-centred care [15]. In contrast, experiences of care measures ask patients to indicate what actually happened during the process of care delivery, and so are less influenced by subjective patient expectations and provide more detailed information to health care providers and systems about where quality improvements are needed [16, 17]. However, in order to accurately reflect the quality of care received and identify variations in patients’ experiences, PROMs should meet recommended psychometric criteria for reliability (internal consistency, test re-test reliability), and validity (face, content, construct validity) [1824].

There are few existing reviews that have assessed the psychometric properties of measures developed to identify patients’ experiences of care across a range of settings and diseases [2528]. Only one of these reviews evaluated the psychometric properties of quality of care measures designed specifically for cancer patients, but focused on satisfaction measures [27]. Further, this review [27] did not investigate the degree to which these quality of care measures assessed the six IOM-endorsed dimensions of patient-centred care [1].

This systematic review identified:
  1. 1)

    the degree to which PROMs developed to assess the quality of patient-centred cancer care since the publication of the IOM’s “Crossing the Quality Chasm” report in 2001 have addressed the IOM’s six endorsed dimensions of patient-centred care [1]; and

     
  2. 2)

    the psychometric properties of these measures.

     

Methods

Search strategy and selection criteria

The electronic databases Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies outlining the development of PROMs designed to assess the quality of patient-centred cancer care. Given the IOM’s Crossing the Quality Chasm report was published in 2001 [1], databases were searched between January 2001 and December 2011 inclusive. The following combinations of keywords were used: (patient-centred or patient-centered or quality of care or satisfaction or experience*) AND (questionnaire* or survey* or instrument* or measure* or scale* or tool*) AND (cancer* or neoplasm* or oncol*). The use of an * in the keywords allows words that contain that term to be captured in the literature search. For example the keyword measure* will identify articles that contain variations of that word such as measure, measures, measurement and measurements. The reference lists of retrieved articles were also checked to identify any additional relevant publications.

The inclusion criteria for this systematic review were studies that:
  1. (i)

    reported the development and psychometric properties (reliability and validity) of new PROMs designed to assess the quality of patient-centred cancer care, or reported the validation of an existing measure for use with a new population (e.g. patient-centred care measure translated for use with a Spanish cancer patient population). Given the IOM’s recommendations were published in 2001 [1], studies describing the validation of an existing measure were eligible only if the original PROM was developed from 2001 onwards.

     
  2. (ii)

    described PROMs specifically developed for use with adult cancer patient populations (i.e., aged 18 years or older); and

     
  3. (iii)

    were published in an English language peer-reviewed journal.

     
Publications were excluded if they:
  1. (i)

    were reviews, editorials, commentaries or protocol papers;

     
  2. (ii)

    reported qualitative research or used a Delphi consensus process;

     
  3. (iii)

    reported data from medical records, administrative databases or cancer registries (i.e., patients were not surveyed);

     
  4. (iv)

    focussed on cancer screening only;

     
  5. (v)

    predominately surveyed cancer patients under 18 years of age;

     
  6. (vi)

    assessed the views of health professionals such as oncologists, nurses, and general practitioners;

     
  7. (vii)

    examined the perceptions of relatives and/or caregivers;

     
  8. (viii)

    included only cancer patients with advanced cancer or those receiving end of life care; These patients were excluded because the outcome measures and care delivered to patients with advanced cancer can be unique, reflecting the specific goals of advanced disease and/or end-of-life care [29].

     
  9. (ix)

    reported only patient ratings of quality of care and/or patient characteristics associated with quality of care – i.e. did not develop a measure with the aim of testing its psychometric properties; and

     
  10. (x)

    validation of an existing measure that was not eligible for the review (e.g. the original PROM was developed prior to 2001). PROMs developed prior to 2001 were excluded because it would have been unreasonable to assess the degree to which such PROMs addressed the IOM’s dimensions of patient-centred care given the IOM recommendations were published in 2001 [1].

     

Study and sample characteristics

The study and sample characteristics extracted from eligible publications included: the name of the measure; country of development; patient recruitment setting (e.g. hospital, cancer registry); patient eligibility criteria; sample size; consent rate; participants’ socio-demographic characteristics (e.g. mean age, gender, level of education, employment status); and participants’ disease and treatment characteristics (e.g. cancer type, cancer stage and/or time since diagnosis, treatments received).

Items and subscales of measures

Information extracted about the characteristics of each measure included: the type of measure (i.e. satisfaction versus experiences); number of items; the type of response scale, and the names and number of subscales. Two coders (FT & SKR) independently examined each of the PROMs’ items to determine whether or not the PROM contained content that related to any of the IOM’s six patient-centred dimensions and how many of the six IOM-endorsed dimensions of patient-centred care were covered [1]. At least one item in the PROM needed to examine issues related to a particular IOM patient-centred care dimension (as defined below) for that area to be categorised as addressed. A conservative approach was taken when deciding whether or not a measure covered a particular dimension. For example, if a measure included an item that examined whether a patient was provided with information on long-term side effects, the measure was categorised as meeting the information and communication dimension, but not the physical comfort dimension. The physical comfort dimension was classified as present only if items assessed the provision of pain relief or the management of physical symptoms. The criteria used to classify each patient-centred care dimension, which are based on the definitions outlined in the IOM’s “Crossing the Quality Chasm” report [1], are described below. Only one aspect of the dimension was needed for the PROM to be classed as covering that patient-centred care dimension.

1) Respect for patients’ values, preferences, and expressed needs

PROMs were classified as covering this dimension if they assessed: a) whether care responded to the patient’s cultural and other values, preferences and needs; b) whether patients were given the opportunity to express their views; c) whether patients were treated with respect during care; and/or d) whether patients were informed and involved in decision making according to their preferences [1].

2) Coordinated and integrated care

PROMs were rated as containing this dimension if they asked: a) whether patient care was coordinated and integrated; b) whether there was timely transfer of up-to-date patient information between healthcare professionals; and/or c) whether patient transitions from one healthcare setting to another went smoothly [1].

3) Provide information, communication, and education

PROMs met the criteria for this dimension if they examined whether health care professionals: a) communicated with patients in a way they could understand; and/or b) provided accurate information regarding care including diagnosis, prognosis, treatment options, follow-up care and support services, according to the patient’s preferred level of information provision [1].

4) Physical comfort

PROMs were classified as covering this dimension if they asked patients whether health care professionals: a) promptly provided pain relief; and/or b) attended to the patient’s physical symptoms and needs [1].

5) Emotional support

PROMs were categorised as meeting this dimension if they assessed whether healthcare professionals: a) addressed the patients’ emotional and spiritual concerns, such as anxiety, which could be experienced for a variety of reasons including uncertainty about their disease, concerns about the financial impact of treatment, or worrying about the impact of the illness on their family [1].

6) Involvement of family and friends

PROMs were considered to have met this dimension if they assessed whether: a) family and friends were involved in the patient’s decision making and care according to the patient’s preferences; and/or b) whether care was responsive to the concerns of family and friends and recognised their needs [1].

Two coders (FT & SKR) also independently examined which PROMs covered all aspects within each of the IOM dimensions. For instance in terms of the physical comfort dimension, PROMs that included items that addressed both of the following criteria were identified: a) promptly provided pain relief; and b) attended to the patient’s physical symptoms and needs.

Psychometric properties of measures

The psychometric properties of each measure were assessed against the same criteria used by Clinton-McHarg and colleagues in their review of instruments designed to measure the psychosocial health of adolescent and young adult cancer survivors [30]. The psychometric criteria are described below.

Internal consistency

A measure was coded as having acceptable internal consistency if correlations for the total scale and each subscale were calculated [19] and a Cronbach’s alpha >0.70 (continuous or dichotomous scales) or Kuder-Richardson 20 (KR-20) >0.70 was reported for the total scale and each sub-scale [18, 19].

Test-retest reliability

Measures were recorded as having adequate test-retest reliability if the instrument had been administered twice to the same sample and: 1) the second administration occurred within 2-14 days of the first administration [20]; and 2) correlations for the total scale, subscales and items were calculated [21] and the agreement between scores achieved a Cohen’s kappa co-efficient (κ) > 0.60 (nominal or ordinal scales) [19] or Pearson correlation coefficient (r) > 0.70 (interval scales) [18, 19] or intraclass correlation coefficient (ICC) >0.70 (interval scales) [18, 19].

Face validity

Measures were considered to have face validity if both those who administered it, and those who completed it, agreed it appeared to measure what it was designed to measure [22].

Content validity

A measure was reported to have adequate content validity if the following processes were described: 1) how the items were developed or selected [18, 19]; 2) how and by whom the content was assessed [18, 19]; and 3) if modifications to the content were needed that the revisions addressed the issues identified [18, 19].

Construct validity

Each measure was assessed as having adequate construct validity if any of the following tests were performed: 1) comparison with other existing measures [19] resulting in Pearson correlation coefficients of (r) >0.40 (convergent validity) or (r) < 0.30 (divergent validity) [23]; 2) comparison of scores on the measure differ significantly between groups with known differences (discriminative validity) [18]; or 3) factor analysis [19] with Eigenvalues set at > 1 [24].

Cross-cultural adaptation

A measure was considered to have adequate cross-cultural adaptation if a conceptually and linguistically equivalent version of the original form confirmed the reliability and validity reflected in the original measure [18].

Coding process

Two authors (FT & SKR) independently assessed all potentially relevant publications to determine whether they met eligibility for inclusion in the review. There was 84% agreement between the two coders’ ratings. Where discrepancies emerged, inconsistent ratings were discussed between the coders until consensus was reached. Both coders also independently extracted information for the Tables from included publications to ensure accuracy. The coders then compared the information extracted and discussed any inconsistencies until agreement was reached.

Results

Study eligibility

A total of 671 publications were identified from the electronic database searches and publication reference lists. Of these, 161 publications were reviews, editorials, commentaries or protocol papers, 40 reported qualitative research and 16 used a Delphi consensus process and were excluded. A further 108 papers reported data from medical records, administrative databases or cancer registries and 53 focussed on cancer screening only and were removed. Of the 293 remaining publications, 48 assessed the views of health professionals such as oncologists, nurses, and general practitioners, 44 focussed on the perceptions of relatives or caregivers, one related to cancer patients aged under 18 years, and 37 focused on an advanced cancer population and/or those receiving end-of-life care and were excluded. Of the remaining 163 publications that surveyed adult cancer patients, 121 examined the prevalence of features of care and/or characteristics associated with patient experiences and 14 validated an existing measure that was not eligible for the review (e.g. the original PROM was developed prior to 2001). One paper that reported the development of the EORTC OUT-PATSAT35 was published in French and therefore excluded [31]. This left 27 papers that reported the development of an instrument and its psychometric properties with an adult cancer patient population, or reported the psychometric properties of a re-validated measure for use with a new population. In these papers, 21 unique PROMs were described (see Figure 1).
https://static-content.springer.com/image/art%3A10.1186%2F1471-2407-14-41/MediaObjects/12885_2013_Article_4278_Fig1_HTML.jpg
Figure 1

Flowchart of methods used to identify relevant publications.

Setting and Sample Characteristics

Table 1 provides a detailed description of the setting and sample characteristics of the eligible studies [3255]. Six studies were conducted in the USA [32, 35, 4244, 47], five in The Netherlands [37, 39, 40, 50, 52], three in England [41, 49, 54], two in France [53, 55], and one in Australia [33], Canada [34], Europe and Asia [38], Germany [46] and Japan [48]. Seventeen studies recruited cancer patients from hospitals or treatment centres [33, 34, 3844, 4650, 5355], whereas only one study recruited patients via a population-based cancer registry [32]. The sample sizes in each study ranged from 82 to 2659 cancer patients and the consent rates varied from 43% to 85%. Thirteen studies included more than one cancer type [3235, 38, 41, 43, 44, 4648, 52, 55].
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

Patient-centred care instruments

The names of the PROMs included in the review are shown in Tables 1, 2, 3, 4 and 5. As shown in Table 2, 15 measures examined patients’ experiences of care [32, 33, 37, 3944, 4850, 52, 53, 55] while 6 measured satisfaction [34, 35, 38, 46, 47, 54]. The number of items for each measure ranged from 15 to 152, and the number of subscales ranged from 1 to 15. The type of response scales varied across the different instruments. The number of IOM-endorsed patient-centred care dimensions [1] that were included in each measure were as follows: two measures included one dimension [35, 54], two measures had two dimensions [42, 46], seven measures had three dimensions [34, 39, 41, 47, 48, 50, 55], five measures had four dimensions [32, 33, 37, 49, 53], and four measures had five dimensions [38, 43, 44, 52]. Only one measure, the Indicators (Non-small Cell Lung Cancer) measure, covered all six dimensions of patient-centred care [40]. Table 3 summarises the PROMs that addressed each of the IOM-endorsed patient-centred care dimensions.
Table 2

Measurement features of PROMs and included IOM-endorsed patient-centred care dimensions

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).

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

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

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

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

QUOTE Breast Cancer [50, 51]

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.

Table 3

IOM patient-centred care dimensions captured by PROMs

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]

 

 

 

CTSQ [35, 36]

     

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]

 

PainCQ [44, 45]

 

PASQOC questionnaire [46]

  

  

Patient Satisfaction with Cancer Care [47]

  

 

Perceived Physician’s Communication Style Scale [48]

 

  

PCQ-P [49]

  

QUOTE Breast Cancer [50, 51]

  

 

QUOTEchemo[52]

 

REPERES-60 [53]

 

 

SCIP [54]

  

   

SAT-RAR [55]

 

 

 
Table 4

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

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

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

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.

Table 5

PROMs demonstrating adequate psychometric properties based on recommended criteria

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]

       

CTSQ [35, 36]

   

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]

  

 

PainCQ [44, 45]

     

PASQOC questionnaire [46]

 

 

  

Patient Satisfaction with Cancer Care [47]

 

 

  

Perceived Physician’s Communication Style Scale [48]

  

  

PCQ-P [49]

 

   

QUOTE Breast Cancer [50, 51]

     

QUOTEchemo[52]

 

   

REPERES-60 [53]

   

SCIP [54]

   

   

SAT-RAR [55]

 

  
Figure 2 illustrates the frequency with which the six IOM-endorsed patient-centred dimensions were included across the 21 measures. “Information, communication and education” was the dimension most commonly included (19 measures). In contrast, only five measures assessed the “involvement and wellbeing of family and friends”. Thirteen measures addressed all the IOM criteria for the emotional support dimension [3234, 3741, 43, 48, 52, 53, 55], 8 measures for information, communication and education [32, 37, 47, 48, 50, 52, 54, 55] and one measure for physical comfort [44]. None of the measures addressed all the IOM criteria within the dimensions of respect for patient values, preferences and needs; coordinated and integrated care; and involvement and wellbeing of family and friends.
https://static-content.springer.com/image/art%3A10.1186%2F1471-2407-14-41/MediaObjects/12885_2013_Article_4278_Fig2_HTML.jpg
Figure 2

Frequency of IOM-endorsed patient-centred care dimensions across 21 measures.

Psychometric properties of instruments

A description of the psychometric properties for each PROM is reported in Table 4.

Internal consistency

Seven of the 21 measures met the criteria considered adequate for internal consistency by reporting a Cronbach’s alpha >0.70 for both the total scale and each sub-scale [33, 42, 43, 4648, 55]. Of the 13 studies that reported Cronbach’s alpha only for the PROMs’ subscales, six of these measures showed all subscales had a Cronbach’s alpha >0.70 [34, 35, 44, 5254].

Test-retest reliability

None of the five measures that examined test-retest reliability [33, 35, 38, 49, 53] met recommended adequacy criteria of a second administration within 2-14 days of the first administration [20] and an adequate agreement between the two administrations on scores for the total scale, subscales and items [18, 19].

Face/content validity

Fifteen measures met the criteria considered adequate for face validity and content validity [33, 35, 3741, 43, 44, 4850, 52, 53],[55].

Construct validity

Eighteen measures met the criteria for adequate construct validity [32, 33, 35, 37, 38, 4144, 4650, 5255]. Sixteen measures conducted factor analyses [32, 33, 35, 37, 4144, 4650, 52, 53],[55] (although only seven reported eigenvalues) [33, 41, 44, 47, 48, 50, 53], nine measures examined convergent validity (r >0.40) or divergent validity (r < 0.30) with existing instruments [35, 38, 42, 46, 47, 49, 5254] and six measures demonstrated significant differences on scores between known groups [35, 38, 41, 42, 53, 55].

Cross-cultural adaptation

Three measures were re-validated with non-English speaking populations. The EORTC IN-PATSAT32 was validated with Sri Lankan cancer patients [56]; the Modified version of the Perceived Involvement in Care Scale (M-PICS) was validated with Lithuanian cancer patients [57]; and the Oncology Patients’ Perceptions of the Quality Nursing Care Scale (OPPQNCS) was validated with Turkish cancer patients [58].

Table 5 summarises which PROMs met the psychometric criteria considered adequate, as described above.

Psychometric properties of PROMs containing all six IOM patient-centred care dimensions

The Indicators (Non-small Cell Lung Cancer) measure [40] was the only PROM that contained items covering all six IOM dimensions of patient-centred care. This measure met the criteria considered adequate for face/content validity, but not for any other psychometric criteria evaluated in this review.

Discussion

This is the first review to identify how many of the six IOM-endorsed dimensions of patient-centred care [1] are covered in existing PROMs assessing the quality of cancer care. Our findings demonstrate that since the publication of the IOM’s Crossing the Quality Chasm report in 2001 [1], only one of 21 patient-centred cancer care instruments, the Indicators (Non-small Cell Lung Cancer) measure, included questions relating to the six IOM dimensions of patient-centred care [40]. However this measure only met the criteria considered acceptable for face/content validity. Further psychometric testing of the Indicators (Non-small Cell Lung Cancer) measure is required before more definitive conclusions can be drawn about its reliability and validity.

Across measures, the most commonly included patient-centred care dimensions were “information, communication and education” (19 of 21 measures) followed by “respectful to patients’ values, preferences, and expressed needs” (16 of 21 measures). In contrast, only seven measures examined patient’s perceptions of “physical comfort” and five assessed the “involvement and wellbeing of family and friends.” Possible explanations for the lesser focus on issues related to family and friends could include: 1) researchers/health professionals perceiving issues related to information and communication as the most important features of patient-centredness; 2) that the patients and survey developers involved in item selection only wished to focus on specific aspects of care; and 3) issues related to family and friends are considered a less crucial feature of cancer care. Furthermore, the measures may not have adequately captured the IOM’s six dimensions of patient-centred care because they were not developed for that purpose. For example, a measure’s objective may have been to focus solely or primarily on physical comfort, rather than to address the IOM’s six dimensions of patient-centred care. Nevertheless, the lack of PROMs that included all six IOM dimensions of patient-centred care [1] limits the potential of these existing measures to capture the whole-person orientation of health care and is likely to result in an incomplete representation of the quality of care provided to cancer patients.

Improvements to the reliability of existing patient-centred care PROMs and better reporting of their internal consistency, are needed. Only seven of the 21 measures met the criteria considered adequate for internal consistency by reporting a Cronbach’s alpha >0.70 for the total scale and each sub-scale [33, 42, 43, 4648, 55]. A further six measures showed that all subscales had a Cronbach’s alpha >0.70 [34, 35, 44, 5254], but failed to report the internal consistency for the total scale. However, interpretation of internal consistency findings should always consider that when a subscale has a large number of items, Cronbach’s alpha can be artificially high [59, 60]. Test-retest validity was very rarely considered during the development of PROMs assessing patient-centred cancer care. Although four of the five measures that examined test-retest reliability administered a second survey within 2-14 days [33, 35, 38, 53], none of the measures demonstrated acceptable agreement between scores for the total scale, subscales and items across the two administrations [18, 19]. However possible explanations for the lack of adequate test-retest reliability among PROMs assessing patient-centred cancer care may include that: 1) patients’ experiences of care, particularly for those receiving active treatment, actually changed between the initial and second administration of the measure; and 2) completing the initial measure altered patients’ expectations of patient-centred care and as a result patients rated their care differently during the second administration of the measure. Nonetheless, future research that develops PROMs of patient-centred cancer care, or validates existing measures should examine test-retest reliability, with the aim of achieving high item-to-item agreement. Item-to-item agreement is necessary [21], as high agreement between overall subscale scores can be obtained even when corresponding items within the subscale are answered differently across the two administrations.

In terms of the validity of the PROMs developed to assess patient-centred care, most of the measures met the criteria considered adequate for face/content validity (15 of 21 measures) and construct validity (18 of 21 measures). Factor analysis was the most common strategy adopted to measure construct validity (16 measures), however, few studies indicated whether eigenvalues >1 [24] were achieved [33, 41, 44, 47, 48, 50, 53]. Eigenvalues are used to determine the number of subscales within the measure by applying the eigenvalues >1 rule which produces psychometrically reliable and psychologically meaningful results [24]. Thus improvements to reporting whether eigenvalues were >1 appears necessary for PROMs that examine patient-centred cancer care.

The context in which these PROMs assessed patient-centred cancer care should be considered. Most measures were developed with cancer patients recruited from hospitals or treatment centres [33, 34, 3844, 4650, 5355]. Only one measure was developed with patients recruited via a population-based cancer registry [32], despite benefits of such recruitment including the ability to sample a representative group of patients at different stages of the disease and with varied experiences of cancer care [61]. Although measuring the quality of patient-centred cancer care during initial treatment and hospital visits is crucial, undertaking such assessments with cancer survivors who no longer visit the hospital regularly is also important. For instance, women diagnosed with breast cancer have reported that the quality and duration of their follow-up consultations with clinicians had declined compared to the quality and duration of their initial treatment experiences [62].

The limitations of this review include that studies available in a non-English language peer-reviewed journal and the grey literature were excluded which could have led to some bias in the findings. Furthermore, the survey developers’ reasons for constructing the PROM should be considered. It is possible that the PROM’s objective may have been to focus on specific features of patient-centred care rather than to include items that covered the IOM’s six dimensions of patient-centred care. This may explain why most PROMs did not adequately address the IOM’s six dimensions of patient-centred care. Additionally, insufficient or unavailable reporting of the 21 PROMs’ psychometric properties may have influenced the ratings regarding the adequacy of the measure’s psychometric properties. We did not contact the authors of each PROM to enquire if additional unpublished psychometric information was available for that measure.

Conclusions

Quality improvements to the health care system can be guided by PROMs assessing the quality of patient-centred cancer care. The Indicators (Non-small Cell Lung Cancer) measure [40] was the only identified PROM that included questions relating to the six IOM endorsed dimensions of patient-centred care [1], however psychometric inadequacies and/or incomplete reporting indicates that further psychometric testing of this measure is required. Using more than one measure or further developing existing measures to include all six patient-centred care dimensions could improve the assessment and the delivery of patient-centred care. Additionally, given the lack of psychometrically rigorous PROMs developed to assess patient-centred cancer care that capture the six IOM dimensions, the construction of new comprehensive measures whose psychometric properties are adequate may also be warranted.

Abbreviations

IOM: 

Institute of Medicine

PROMs: 

Patient-reported outcome measures.

Declarations

Acknowledgements

This research was undertaken by the Priority Research Centre for Health Behaviour at the University of Newcastle which receives infrastructure support from the Hunter Medical Research Institute. Dr Flora Tzelepis was supported by a Leukaemia Foundation of Australia and Cure Cancer Australia Foundation Post-Doctoral Research Fellowship. Dr Tara Clinton-McHarg was supported by a Leukaemia Foundation Post-Doctoral Research Fellowship. These funding bodies did not have any role in the study design, collection, analysis and interpretation of data, in the writing of the manuscript and in the decision to submit the manuscript for publication.

Authors’ Affiliations

(1)
Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute

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  66. Pre-publication history

    1. The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1471-2407/14/41/prepub

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© Tzelepis et al.; licensee BioMed Central Ltd. 2014

This article is published under license to BioMed Central Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.