Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS®.

BACKGROUND: The International Consortium for Health Outcomes Measurement (ICHOM) develops condition-specific Standard Sets of outcomes to be measured in clinical practice for value-based healthcare evaluation. Standard Sets are developed by different working groups, which is inefficient and may lead to inconsistencies in selected PROs and PROMs. We aimed to identify common PROs across ICHOM Standard Sets and examined to what extend these PROs can be measured with a generic set of PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS®). METHODS: We extracted all PROs and recommended PROMs from 39 ICHOM Standard Sets. Similar PROs were categorized into unique PRO concepts. We examined which of these PRO concepts can be measured with PROMIS. RESULTS: A total of 307 PROs were identified in 39 ICHOM Standard Sets and 114 unique PROMs are recommended for measuring these PROs. The 307 PROs could be categorized into 22 unique PRO concepts. More than half (17/22) of these PRO concepts (covering about 75% of the PROs and 75% of the PROMs) can be measured with a PROMIS measure. CONCLUSION: Considerable overlap was found in PROs across ICHOM Standard Sets, and large differences in terminology used and PROMs recommended, even for the same PROs. We recommend a more universal and standardized approach to the selection of PROs and PROMs. Such an approach, focusing on a set of core PROs for all patients, measured with a system like PROMIS, may provide more opportunities for patient-centered care and facilitate the uptake of Standard Sets in clinical practice.

Patients' Perception of Vitiligo Severity.

Identifying which factors contribute to vitiligo severity and determining their individual weight are important in the management of vitiligo. The aim of this study is to investigate the predictive variables concerning vitiligo severity as perceived by the patients. Based on a questionnaire, several factors that may contribute to the Patient Global Assessment (PtGA) of severity were investigated within a Belgian vitiligo population (n = 291). In addition, possible factors influencing vitiligo severity were scored and ranked. The strongest correlations with the PtGA of severity were found for impact, Dermatology Life Quality Index and disease extent. Based on multivariable regression analyses, 64.7% of PtGA of severity could be predicted by subjective and objective variables, while 32% could be explained by objective clinical features only. Patients considered lesion location, extent and disease activity as the most important contributing factors to severity. Vitiligo severity is determined by objective clinical features, but also, for a significant part, by the perceived impact of the disease.

Bridging health technology assessment and healthcare quality improvement using international consortium of health outcomes measurement standard sets.

OBJECTIVE: Although health technology assessment (HTA) and healthcare quality improvement are distinct processes, a greater level of alignment in outcome measures used may increase the quality and efficiency of data collection. This study evaluates the agreement in outcome measures used in oncology for healthcare quality improvement and HTAs, and how these align to the International Consortium for Health Outcomes Measurement (ICHOM) standard sets. METHODS: We conducted a cross-sectional comparative analysis of ICHOM sets focusing on oncological indications and publicly available measures for healthcare quality and HTA reports published by the National Health Care Institute from the Netherlands and the National Institute for Health and Care Excellence from the United Kingdom. RESULTS: All ICHOM sets and HTAs used overall survival, whereas quality improvement used different survival estimates. Different progression estimates for cancer were used in HTAs, ICHOM sets, and quality improvement. Data on health-related quality of life (HRQoL) was recommended in all ICHOM sets and all HTAs, but selectively for quality improvement. In HTAs, generic HRQoL questionnaires were preferred, whereas, in quality improvement and ICHOM sets, disease-specific questionnaires were recommended. Unfavorable outcomes were included in all HTAs and all ICHOM sets, but not always for quality improvement. CONCLUSIONS: Although HTA and quality improvement use outcome measures from the same domains, a greater level of alignment seems possible. ICHOM may provide input on standardized outcome measures to support this alignment. However, residual discrepancies will remain due to the different objectives of HTA and quality improvement.

Development of a framework with tools to support the selection and implementation of patient-reported outcome measures.

BACKGROUND: Patient reported outcomes (PROs) provide information on a patient's health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in clinical practice for individual patient care, as well as in quality improvement, and for providing transparency of outcomes to stakeholders through public reporting. However, current knowledge of selecting and implementing PROMs for these purposes is scattered, and not readily available for clinicians and quality managers in healthcare organizations. The objective of this study is to develop a framework with tools to support the systematic selection, implementation and evaluation of PROs and PROMs in individual patient care, for quality improvement and public reporting. METHODS: We developed the framework in a national project in the Netherlands following a user-centered design. The development process of the framework contained five iterative components: (a) identification of existing tools, (b) identification of user requirements and designing steps for selection and implementation of PROs and PROMs, (c) discussing a prototype of the framework during a national workshop, (d) developing a web version, (e) pre-testing of the framework. A total of 40 users with different perspectives (clinicians, patient representatives, quality managers, purchasers, researchers) have been consulted. RESULTS: The final framework is presented as the PROM-cycle that consists of eight steps in four phases: (1) goal setting, (2) selecting PROs and PROMs, (3) developing and testing of quality indicator(s), (4) implementing and evaluating the PROM(s) and indicator(s). Users emphasized that the first step is the key element in which the why, for whom and setting of the PROM has to be defined. This information is decisive for the following steps. For each step the PROM-cycle provides guidance and tools, with instruments, checklists, methods, handbooks, and standards supporting the process. CONCLUSION: We developed a framework to support the selection and implementation of PROs and PROMs. Each step provides guidance and tools to support the process. The PROM-cycle and its tools are publicly available and can be used by clinicians, quality managers, patient representatives and other experts involved in using PROMS. Through periodic evaluation and updates, tools will be added for national and international use of the PROM-cycle.

Using client experiences for quality improvement in long-term care organizations.

OBJECTIVE: To examine whether client experiences measured with the Consumer Quality Index (CQ-index or CQI) questionnaires are used in Dutch nursing homes and homes for the elderly for quality improvement. DESIGN: Information was gathered through face-to-face interviews with day-to-day workers, quality managers and middle and senior management representatives on the subjects of quality policy and CQI. SETTING: Twelve long-term care organizations in the Netherlands. STUDY PARTICIPANTS: A total of 47 employees were interviewed. RESULTS: Long-term care organizations that systematically incorporate client experiences into their quality system are more active in using the CQI for quality improvement: information was disseminated throughout the organization, project groups pointed out quality improvement initiatives and every worker was involved in this process. These organizations had often held a certificate for their quality policy for some length of time. In other organizations, CQI information was used less systematically. For instance, only the quality manager was involved, or improvement initiatives were left to employees working in the primary process. The actual improvement initiatives varied. For example, employees created more individual time for clients to avoid the feeling of being rushed; other organizations changed the food delivery to enhance food enjoyment. CONCLUSIONS: Although measuring client experiences obligatory, it is not sufficient guarantee that client feedback is used for quality improvement. Although measuring client experiences has led to various improvement initiatives, their effectiveness remains unclear. There is need for guidance on effective improvement of client experiences.

Patients' experiences of the quality of long-term care among the elderly: comparing scores over time.

BACKGROUND: Every two years, long-term care organizations for the elderly are obliged to evaluate and publish the experiences of residents, representatives of psychogeriatric patients, and/or assisted-living clients with regard to quality of care. Our hypotheses are that publication of this quality information leads to improved performance, and that organizations with substandard performance will improve more than those whose performance is relatively good. METHODS: The analyses included organizational units that measured experiences twice between 2007 (t(0)) and 2009 (t(1)). Experiences with quality of care were measured with Consumer Quality Index (CQI) questionnaires. Besides descriptive analyses (i.e. mean, 5(th) and 95(th) percentile, and 90% central range) of the 19 CQI indicators and change scores of these indicators were calculated. Differences across five performance groups (ranging from 'worst' to 'best') were tested using an ANOVA test and effect sizes were measured with omega squared (ω(2)). RESULTS: At t0 experiences of residents, representatives, and assisted-living clients were positive on all indicators. Nevertheless, most CQI indicators had improved scores (up to 0.37 change score) at t(1). Only three indicators showed a minor decline (up to -0.08 change score). Change scores varied between indicators and questionnaires, e.g. they were more profound for the face-to-face interview questionnaire for residents in nursing homes than for the other two mail questionnaires (0.15 vs. 0.05 and 0.04, respectively), possibly due to more variation between nursing homes on the first measurement, perhaps indicating more potential for improvement. A negative relationship was found between prior performance and change, particularly with respect to the experiences of residents (ω(2) = 0.16) and assisted-living clients (ω(2) = 0.15). However, the relation between prior performance and improvement could also be demonstrated with respect to the experiences reported by representatives of psychogeriatric patients and by assisted-living clients. For representatives of psychogeriatric patients, the performance groups 1 and 2 ([much] below average) improved significantly more than the other three groups (ω(2) = 0.05). CONCLUSIONS: Both hypotheses were confirmed: almost all indicator scores improved over time and long-term care organizations for the elderly with substandard performance improved more than those with a performance which was already relatively good.

A comparison of a postal survey and mixed-mode survey using a questionnaire on patients' experiences with breast care.

BACKGROUND: The Internet is increasingly considered to be an efficient medium for assessing the quality of health care seen from the patients' perspective. Potential benefits of Internet surveys such as time efficiency, reduced effort, and lower costs should be balanced against potential weaknesses such as low response rates and accessibility for only a subset of potential participants. Combining an Internet questionnaire with a traditional paper follow-up questionnaire (mixed-mode survey) can possibly compensate for these weaknesses and provide an alternative to a postal survey. OBJECTIVE: To examine whether there are differences between a mixed-mode survey and a postal survey in terms of respondent characteristics, response rate and time, quality of data, costs, and global ratings of health care or health care providers (general practitioner, hospital care in the diagnostic phase, surgeon, nurses, radiotherapy, chemotherapy, and hospital care in general). METHODS: Differences between the two surveys were examined in a sample of breast care patients using the Consumer Quality Index Breast Care questionnaire. We selected 800 breast care patients from the reimbursement files of Dutch health insurance companies. We asked 400 patients to fill out the questionnaire online followed by a paper reminder (mixed-mode survey) and 400 patients, matched by age and gender, received the questionnaire by mail only (postal survey). Both groups received three reminders. RESULTS: The respondents to the two surveys did not differ in age, gender, level of education, or self-reported physical and psychological health (all Ps > .05). In the postal survey, the questionnaires were returned 20 days earlier than in the mixed-mode survey (median 12 and 32 days, respectively; P < .001), whereas the response rate did not differ significantly (256/400, 64.0% versus 242/400, 60.5%, respectively; P = .30). The costs were lower for the mixed-mode survey (€2 per questionnaire). Moreover, there were fewer missing items (3.4% versus 4.4%, P = .002) and fewer invalid answers (3.2% versus 6.2%, P < .001) in the mixed-mode survey than in the postal survey. The answers of the two respondent groups on the global ratings did not differ. Within the mixed-mode survey, 52.9% (128/242) of the respondents filled out the questionnaire online. Respondents who filled out the questionnaire online were significantly younger (P < .001), were more often highly educated (P = .002), and reported better psychological health (P = .02) than respondents who filled out the paper questionnaire. Respondents to the paper questionnaire rated the nurses significantly more positively than respondents to the online questionnaire (score 9.2 versus 8.4, respectively; χ²1 = 5.6). CONCLUSIONS: Mixed-mode surveys are an alternative method to postal surveys that yield comparable response rates and groups of respondents, at lower costs. Moreover, quality of health care was not rated differently by respondents to the mixed-mode or postal survey. Researchers should consider using mixed-mode surveys instead of postal surveys, especially when investigating younger or more highly educated populations.

Legal rights of client councils and their role in policy of long-term care organisations in the Netherlands.

BACKGROUND: Legislation demands the establishment of client councils in Dutch nursing homes and residential care facilities. The members of those councils are residents or their representatives. Client councils have the right to participate in the strategic management of long-term care facilities. More specifically, they need to be consulted regarding organisational issues and a right to consent on issues regarding daily living of residents, including CQ-index research. CQ-index research concerns a method that measures, analyses and report clients' experiences about the quality of care. Research questions were: 'Do client councils exercise their rights to be consulted and to give their consent?' and 'What is the role of client councils in the process of measuring clients' experiences with the CQ-index and what is their opinion about the CQ-index?' METHODS: Postal questionnaires were sent to members of 1,540 client councils of Dutch nursing homes and residential care facilities. The questionnaire focussed on background information and client councils' involvement in decision-making and strategic management. RESULTS: The response rate was 34% (n = 524). Most councils consisted of seven members (range: 5 to 12 members). One out of four members participating in the client councils were clients themselves. Although councils have a legal right to be consulted for organisational issues like finance, vision, annual report, and accommodation, less than half the councils (31-46%) reported that they exercised this right. The legal right to consent was perceived by 18 to 36% of the councils regarding client care issues like food and drink, complaints registration, respectful treatment, and activities. For CQ-index research, only 18% of the client councils perceived a right to consent. Their rights to choose an approved contractor -who performs CQ-index research- and indicating improvement priorities, were hardly used. CONCLUSIONS: Client councils play a rather passive role in determining the policy on quality of long-term care. Therefore, specific attention and actions are needed to create a more proactive attitude in councils towards exercising their rights, which are already supported by legislation.

Measuring patients' experiences with rheumatic care: the consumer quality index rheumatoid arthritis.

Rheumatologists and other caregivers can learn from patients' experiences with the quality of care that can be measured with the CQ-index Rheumatoid Arthritis (CQ-index RA) survey. Patients with RA (n = 590) received this survey were they rated their actual experiences and what they find important in rheumatic healthcare. Descriptive analyses and psychometric methods were used to test the reliability. The response rate was 69%. The items in the pilot instrument could be grouped into 10 scales (α ranged from 0.77 to 0.94). The most important quality aspects according to patients concerned the alertness when prescribing medication. Providing patients with information on a special website of the hospital about RA was the highest quality improvement aspect. The results of this study show that the CQ-index RA is a reliable instrument for quality assessment from the patients' perspective. The instrument provides rheumatologists and other caregivers with feedback for service improvement initiatives.