Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients

Cancer patients have to cope with a great deal of distress. A recent study among patients with inoperable lung cancer showed that for 27 percent of these patients their experiences with healthcare services were among their most important concerns. Waiting times, problems with information and communication and a lack of continuity in healthcare professionals are among the healthcare experiences that cause distress [1]. In 2001 the Institute of Medicine (IOM) postulated the theory of patient-centeredness as one of the ways in which the healthcare system could reduce patients’ problems, instead of add to their burden. The IOM states that care should be patient-centered, that it is respectful of and responsive to individual patient’s preferences, needs, and values and that patient values should guide all clinical decisions [2]. Patient-centered care has been associated with improved patient satisfaction, better treatment adherence, improved recovery and health outcomes, reduced readmission rates and better seeking of follow-up care [3–6]. Therefore, patient-centeredness of care is now seen as an important quality of care aspect worldwide. In order to achieve patient centered care measuring patient experiences with healthcare is vital. Comparative measures of patient preferences can be used by healthcare professionals to improve care, by patients to select their caregiver, by insurers to contract doctors and hospitals and by hospital managers and policy makers to monitor the quality of care [2, 7].

It is important to note that healthcare professionals and patients do not always agree on what is important in patient care. In 2010, Wessels et al. reported that expertise and attitude of healthcare providers as well as accessibility of services were more important to cancer patients than healthcare professionals expected. Moreover, the importance of organisational and environmental aspects was overrated by healthcare professionals [8]. Patient centeredness can only be measured by asking the patients themselves. When measuring patient experiences, elements of patient centeredness as identified in the literature (respect for patient needs and preferences, involvement of family and friends, sensitivity to nonmedical and spiritual dimensions of care, collaboration and team management, education and shared knowledge, free flow and accessibility of information) must be included [9].

For measuring patient experiences, valid and reliable instruments that have been developed in close interaction with patients should be used. In the Netherlands, patients’ experiences are measured using a standardized method, the Consumer Quality Index (CQI) [10]. This CQI consist of a large ‘family’ of questionnaires and interview protocols that are complemented with detailed instructions about how to use these instruments (e.g. how to draw samples, how to collect data, how to analyse and report findings etc.). The CQI has been implemented in numerous areas of healthcare where it provides information for care providers to improve their service, for policy makers to aid in determining policy, for health care insurers to use in their negotiations with healthcare organisations and for patients to help them make informed choices between healthcare providers [11]. Although literature is inconsistent, Fung et al. show in their review that the availability of publically accessible performance data stimulates quality improvement at the hospital level[12–14]. The CQI methodology is based on the American CAHPS (Consumer Assessment of Healthcare Providers and Systems) [15] and the Dutch QUOTE (QUality of care through the patient’s eyes) [16] instruments. It entails a unique combination of questions on the frequency with which quality criteria are met and the importance of aspects according to patients.

Cancer patients are generally regarded to have different needs than patients who have not been confronted with a potentially lethal disease. A number of studies has measured the satisfaction and needs of cancer patients with their healthcare [17–19]. Patients rated technical quality of medical care, interpersonal and communication skills of doctors and accessibility of care as important aspects [17]. Skarstein reported in 2002 that the most important predictors of cancer patient satisfaction were performance of nurses and physicians, level of information perceived, outcome of health status, reception at the hospital and anxiety [18]. In 2003, Tamburini reported information needs (regarding diagnosis, future conditions, dialogue with doctors, economic insurance solutions related to the disease) and improved ‘hotel’ services (bathrooms, meals, cleanliness) as important aspects [19]. In 2009, a questionnaire measuring cancer patients’ preferences was developed, based on the outcome of 10 focus group interviews. Patients rated expertise, safety, performance and attitude of physicians and nurses as the most important issues in cancer care [20].

Although it is important to measure the needs of patients, their satisfaction and preferences, as was done in the above-mentioned studies, it is more informative to combine this with measuring patients’ actual experiences with healthcare [16]. Reports of experiences rather than satisfaction can give more direct guidance on how to improve the provided healthcare [21]. In the Netherlands, a questionnaire on patient experiences has been developed for breast cancer patients [10]. However, until now a generic questionnaire capable of measuring experiences of patients with all types of cancer was not available. A generic questionnaire has advantages: it can be used for patients with all tumour types and makes developing many tumour-specific questionnaires superfluous. Moreover, a generic questionnaire can be set out among large patient groups, thereby making it easier to benchmark quality of cancer care on a hospital level.

We assumed that from the patient’s perspective, the majority of healthcare experiences are not tumour-specific. Therefore, the aim of the current study was to develop a generic questionnaire to measure both preferences and experiences of patients with all types of cancer. The questionnaire should be suitable for registration and improvement of quality of cancer healthcare, through, for instance, the implementation in the auditing procedure of hospitals. For the development of the questionnaire we combined multiple sources and worked in close collaboration with the Dutch Federation of Cancer patient Organisations (NFK) in order to ensure robust and relevant outcomes that can be implemented in the cancer care system. We performed focus group interviews with cancer patients, looked at quality criteria devised by the NFK and already existing questionnaires. The developed questionnaire was tested in a group of cancer patients.

A group of experts was formed, consisting of healthcare professionals, patient organisations, health insurers and researchers. This group was consulted for decisions regarding the creation and adaptation of the questionnaire.

Patients with all types of malignant tumours were included, as long as they received treatment in a Dutch hospital or specialized cancer treatment centre. We chose the following inclusion criteria for both the focus group discussions and the questionnaires. Participants were at least 18 years old and the last treatment occurred no longer than two years before the focus group discussion or conduct of the survey. This study was performed in agreement with the declaration of Helsinki. Approval by a medical ethics committee was not required. All participants in this study gave written informed consent for the use of the data provided by them. Data from focus group discussions and questionnaires were analyzed anonymously.

We developed a questionnaire that measures patient experiences with cancer care in hospitals for patients with all types of cancer. The revised version of the questionnaire contains 99 questions and 12 reliable scales (the original questionnaire prior to psychometric analyses contained 110 questions). It measures a broad array of topics specific to the needs and wishes of cancer patients, including provision of information at different stages of the treatment, continuity of care, psychosocial guidance and personal attention after completion of the treatment. For the majority of scales and for the items rated most important by patients we found no differences between tumour types, although certain tumour-specific results were found. This illustrates the advantage of a generic questionnaire. It can be used for patients with all tumour types (compared to having to develop many tumour-specific questionnaires). Moreover, a generic questionnaire can be sent out to many patients per hospital, thereby making it possible to make large scale comparisons between hospitals.

With regard to our first research question - What are the most important aspects of quality of cancer care according to patients? - we found that the most important themes were: rapid and adequate referral, consultation of other professionals by the doctor, rapid start of the treatment after diagnosis, the need for information and confidence in the healthcare professional (Table 3). The first three were previously identified in breast cancer patients [20, 30]. The latter two partially confirm previous findings (provision of information, communication skills, accessibility of care and technical quality of the medical care) [17–20]. Important items from the theory of patient-centeredness can also be identified in these themes (collaboration and team management, education and shared knowledge, free flow and accessibility of information), supporting the construct validity of these subscales.

The answer to our second research question - What are the actual experiences of cancer patients with these quality aspects? can be derived from the scores on the different scales in the experience questionnaire (Figure 1). Highest scores were given for skills and cooperation of healthcare professionals and for patient-centered approach by doctors. Interestingly, hospitals scored relatively low on psychosocial guidance, on possibilities for other investigations and treatments and on information after completion of the treatment. In addition, our improvement scores showed that examination of relatives of patients with a heritable type of cancer was not frequently discussed with patients even though patients found this to be important. A study published in 2009 by Damman et al. among breast cancer patients reported high improvement scores for referral to rehabilitation, the possibility of making an appointment rapidly and referral to psychosocial care [10]. This is generally in agreement with our findings.

Our third research question was ‘Are there any differences in experiences between subgroups of cancer patients?’ Based on the experience questionnaire, we observed statistically significant differences between patients with different tumour types for five scales (Freedom of choice, Psychosocial guidance, Continuity of care by healthcare professional/side effects and complaints, Patient-centered approach by nurses and Information at completion of treatment). Breast cancer patients reported most positive experiences for all these scales (Figure 2). This can be explained by the improvement in the quality and speed of breast cancer detection and treatment in the Netherlands in the recent years [31]. In contrast to most studies, our questionnaire allows participants to rate doctors and nurses separately. This resulted in significantly higher scores for doctors compared to nurses regarding their attitude towards patients. This is a surprising result because in other studies the contrary has been found [32, 33]. Moreover, from the focus groups we had the impression that nurses are found to be more patient-centred than physicians. It must be noted that the low number of respondents with cancer of the urinary tract, head and neck, and central nervous system, prevent us from drawing conclusions regarding the use of the questionnaire in specific groups of patients.

A major strength of this study is that we incorporated the importance cancer patients attach to different quality aspects in several phases of the construction of the questionnaire. Our focus group discussions with cancer patients ensured that quality aspects important to patients were included in the pilot version of the questionnaire. Sending out the importance questionnaire enabled us to exclude questions that are considered unimportant by patients and to retain questions that would be eliminated from the questionnaire based on their psychometric properties but were deemed important by patients. Our questionnaire includes a broad range of themes, derived from multiple sources and is therefore very comprehensive. An additional advantage is that the questionnaire is generic for cancer patients. This allows for the comparison of different tumour types. Moreover, our results allow policy makers, healthcare professionals and patient organisations to learn from the type of care given to breast cancer patients, as we show high scores are given by breast cancer patients.

A possible drawback of the comprehensive nature of the questionnaire is that it may be considered long by patients, although only 13 (out of 732) participants reported this complaint. The experience questionnaire showed a response of 50 percent. This is comparable to what is found in the literature (42–75 percent) [34–38]. The literature is not in agreement as to whether the number of questions in a questionnaire influences the response rate. Sitzia et al. found in 1998 in a review among 210 studies that there was no effect, while Edwards et al. found in a review in 2002 that shorter questionnaires have higher response rates [36, 39, 40]. It appears as though the number of questions in the questionnaire, although rather high, did not form a substantial barrier for patients in the current study.

There was a difference in response between the experience questionnaire (50 percent) and the importance questionnaire (68 percent). It is unclear how this difference arose, since the distribution of age and gender for respondents and non-respondents in both groups was highly similar, the number of questions was comparable in both questionnaires and invitations to participate in the study were sent in the same way for both questionnaires. The only substantial difference found between the two groups was in the types of tumours reported by the patients. This may have caused a different response. Compared to the Dutch cancer population, there were fewer patients with lower respiratory tract cancer and more with cancer of the female reproductive organs among respondents to the experience questionnaire. It remains unclear why this difference exists since respondents from the different diagnosis groups were all selected and approached in exactly the same way. The respondents to the importance questionnaire had the same five most frequently reported tumour types as the Dutch cancer population, making systematic sampling errors unlikely.

The fact that the questionnaire is in Dutch also introduces a possible bias. Dutch residents who do not speak the Dutch language are less likely to fill out the questionnaire, even though we allowed people to fill out the questionnaire with the aid of an interpreter. This was reflected in our results, 94 percent of the respondents were of Dutch descent. This is observed as well in other questionnaire-based studies, 70–79 percent of a study population in New Zealand and the USA was Caucasian [41, 42]. The translated version of the questionnaire (additional file 1) will enable international comparisons.

In order to keep the questionnaire down to a reasonable size we did not include certain aspects of cancer care that only apply to specific subgroups. This may be considered a limitation. However, CQI questionnaires for specific subgroups have been or are being developed for breast cancer care [10] and for radiotherapy [43]. The combination of these questionnaires will result in both complete and specific information on the experiences of the cancer population.

Although the sample for this study was drawn by a Dutch health insurance company with national coverage, no data are available on the hospitals where the respondents were treated. Therefore we cannot guarantee national coverage of our data. In future research stratification on hospital level should be applied so that national coverage of the respondent population can be ensured and results can be generalized to the whole country.

Based on the research described here, the current questionnaire should be tested for its ability to discriminate between hospitals, so it can be used for comparison of hospitals. Preferably this is to be done in a group of cancer patients with one specific tumour type, to rule out any potential differences caused by the tumour type. Furthermore, using the English translated version of the questionnaire will facilitate international use of the questionnaire and comparison with international cancer care.

We developed a questionnaire that measures the importance of aspects and the experiences of all types of cancer patients based on quality aspects formulated by patients. We showed known and new quality aspects that are very important to patients, the experiences of patients with respect to these aspects, and that differences exist in experiences between people with different tumour types. After testing for discriminatory power our questionnaire can be used nation-wide to measure quality of cancer care from the patient perspective and to identify differences in the experiences of patients in different hospitals. Finally, in contrast to most previously developed questionnaires, our questionnaire makes a distinction between care provided by doctors and by nurses.

JB analyzed and interpreted the data and drafted the manuscript, MZ contributed to the conception and design of the study, collected data and critically read the manuscript. PE contributed to the conception and design of the study and critically read the manuscript, MH contributed to the conception and design of the study and critically read the manuscript, DD contributed to the conception and design of the study and critically read the manuscript, JR contributed to the conception and design of the study and critically read the manuscript. All authors read and approved the final manuscript.