Validation of the CaReQoL asthma: a patient reported outcome measure for monitoring the perceived effects of pulmonary rehabilitation in adult patients with severe refractory asthma.

BACKGROUND: The CaReQoL Asthma assesses the care-related quality of life outcomes of pulmonary rehabilitation retrospectively in patients with severe asthma. The questionnaire comprises five domains (physical functioning; social functioning; coping with asthma; knowledge about asthma; medication). AIM: To investigate construct and criterion validity of the CaReQoL Asthma, as well as its responsiveness and minimal important change (MIC), in comparison with other health measures (AQLQ, ACQ and FEV1). METHODS: Eighty three adults with severe refractory asthma filled out the CaReQoL Asthma at 6 and 12 months after a 12-week personalized multidisciplinary pulmonary rehabilitation program in a tertiary asthma centre, either in Switzerland or The Netherlands. Construct validity and responsiveness were assessed by testing pre-defined hypotheses about associations with changes in AQLQ, ACQ and FEV1 scores. Criterion validity and MIC was assessed using Global Perceived Effect (GPE). Factor analyses, Cronbach's alpha, Spearman's correlations, paired t-tests and Student-Newman-Keuls tests were performed. RESULTS: Cronbach's alphas of the questionnaire domains ranged from 0.82 to 0.95. Good construct validity and responsiveness were found; 84% of the assessed correlations confirm pre-defined hypotheses and reflect both weak and moderate to strong correlations. Good criterion validity was also identified, with CaReQol scores discriminating better than other health measures between levels of GPE at 6 months post-rehabilitation. The MIC for the total score was estimated at 0.84. CONCLUSION: These study results suggest that the CaReQoL Asthma is a valid and responsive instrument and shows to be a comprehensive and tailored questionnaire for evaluating and monitoring outcomes of pulmonary rehabilitation in patients with severe refractory asthma. In order to further substantiate the reliability and validity of the CaReQoL Asthma, as well as to monitor outcomes of pulmonary rehabilitation in patients with severe asthma, it is recommended to use the CaReQoL Asthma in addition to other disease specific instruments.

Quality evaluation questionnaires - nursing homes (QEQ-NH); validation of questionnaires for measuring quality of care in nursing homes from various perspectives.

BACKGROUND: This study aims to describe the validation and optimization of a new instrument designed to comprehensively measure and evaluate the quality of care in nursing homes; the Quality Evaluation Questionnaires for Nursing Homes (QEQ-NH). This instrument comprises several questionnaires on the perceived quality of care for various perspectives (e.g. clients, family and professional caregivers) and covers eight themes of the national quality framework for nursing home care in the Netherlands. METHODS: Data were collected in six nursing homes between September 2017 and June 2018, among 359 residents, 48 family caregivers and 648 professional caregivers who completed a subgroup-specific questionnaire of the QEQ-NH. Construct and criterion validity of the three questionnaires were tested with item- and scale analyses. Content validity of the questionnaires was tested in cognitive interviews with 20 participants (7 residents, 5 family caregivers and 8 professional caregivers). RESULTS: Psychometric analyses confirmed the multidimensionality and reliability of the three questionnaires, and the cognitive interviews showed various possibilities for further optimization of the instrument. Construct, criterion and content validity of the three questionnaires ranged from acceptable to good. Cronbach's alphas were > .70 for almost all scales. More than half of the items were candidate for optimization according to the cognitive interviews, mainly due to clarity or knowledge problems, and the questionnaires of the QEQ-NH were optimized accordingly. CONCLUSIONS: The Quality Evaluation Questionnaires for Nursing Homes (QEQ-NH) provide a solid basis to measure the quality of nursing home care, by covering the national quality themes and by integrating the various perspectives of all parties involved. With real-time feedback, the instrument provides the management and care teams with information to select possibilities or areas for improvement and to continuously monitor the effects of quality improvement in nursing homes.

Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study.

BACKGROUND: Although participatory research is known to have advantages, it is unclear how participatory research can best be performed. This study aims to report on lessons learned in collaboration with service users involved as co-researchers in three participatory teams in long-term care. METHODS: A multiple case study design was chosen to explore the collaboration in three teams, each covering one specific client group receiving long-term care: physically or mentally frail elderly people, people with mental health problems or people with intellectual disabilities. RESULTS: A good working environment and a good collaboration were found to be crucial requirements for participatory research. A good working environment was developed by discussing reasons for engagement and wishes, formulating basic rules, organizing training sessions, offering financial appreciation, and the availability of the researcher to give travel support. The actual collaboration was established by developing a bond and equal positioning, deciding on the role division, holding on to transparency and a clear structure, and have sufficient time for the collaboration. Moreover, the motivations and unique contributions of the co-researchers and differences between the teams were reported. The motivations of co-researchers ranged from individual goals - such as personal development, creating a new social identity and belonging to a social group - to more external goals, such as being valuable for other service users and increasing the quality of care. An inclusive collaboration required valuing the individual contributions of co-researchers and adjustment to team differences. CONCLUSIONS: The results showed the importance of developing a good working environment and establishing a good collaboration for participatory research. Furthermore, the study shows that individual and team differences should be taken into account. These results can be used by researchers for designing and shaping future research projects in long-term care in collaboration with co-researchers.

Qualitative instruments involving clients as co-researchers to assess and improve the quality of care relationships in long-term care: an evaluation of instruments to enhance client participation in quality research.

OBJECTIVES: Enhancing the active involvement of clients as co-researchers is seen as a promising innovation in quality research. The aim of this study was to assess the feasibility and usability of five qualitative instruments used by co-researchers for assessing the quality of care relationships in long-term care. DESIGN AND SETTING: A qualitative evaluation was performed in three care organisations each focused on one of the following three client groups: frail older adults, people with mental health problems and people with intellectual disabilities. A total of 140 respondents participated in this study. The data comprised observations by researchers and experiences from co-researchers, clients and professionals. RESULTS: Two instruments scored best on feasibility and usability and can therefore both be used by co-researchers to monitor the quality of care relationships from the client perspective in long-term care. CONCLUSIONS: The selected instruments let co-researchers interview other clients about their experiences with care relationships. The study findings are useful for long-term care organisations and client councils who are willing to give clients an active role in quality improvement.

Quality criteria, instruments, and requirements for nursing documentation: A systematic review of systematic reviews.

AIM: To obtain an overview of existing evidence on quality criteria, instruments, and requirements for nursing documentation. DESIGN: Systematic review of systematic reviews. DATA SOURCES: We systematically searched the databases PubMed and CINAHL for the period 2007-April 2017. We also performed additional searches. REVIEW METHODS: Two reviewers independently selected the reviews using a stepwise procedure, assessed the methodological quality of the selected reviews, and extracted the data using a predefined extraction format. We performed descriptive synthesis. RESULTS: Eleven systematic reviews were included. Several quality criteria were described referring to the importance of following the nursing process and using standardized nursing terminologies. In addition, some evidence-based instruments were described for assessing the quality of nursing documentation, such as the D-Catch. Furthermore, several requirements for formats and systems of electronic nursing documentation were found that refer to the importance of user-friendliness and development in consultation with nursing staff. CONCLUSION: Aligning documentation with the nursing process, using standard terminologies, and using user-friendly formats and systems appear to be important for high-quality nursing documentation. The lack of evidence-based quality indicators presents a challenge in the pursuit of high-quality nursing documentation. IMPACT: There is uncertainty in nursing practice about which criteria have to be met to achieve high-quality documentation. Aligning documentation with the nursing process, using standard terminologies, and using user-friendly formats and systems appear to be important. These findings can help nursing staff and care organizations enhance the quality of nursing documentation.

Home-Based Treatment with Immunoglobulins: an Evaluation from the Perspective of Patients and Healthcare Professionals.

PURPOSE: This study aims to evaluate home-based treatment with immunoglobulin (IgG) by assessing and comparing the experiences and perceived value of patients and healthcare professionals, and potential differences in experiences between subcutaneous (SCIg) and intravenous (IVIg) modes of administration. As choices on the location and type of treatment are determined in a shared decision-making process, we evaluated the home-based treatment from the perspectives of both patients and professionals. METHODS: A questionnaire study was conducted among 205 patients, 44 informal caregivers, 43 hospital professionals, and 21 nurses of the Sanquin Home Service (SHS) that provides home treatment with immunoglobulins in the Netherlands. Experiences, perceived benefits, and effects on the patients' quality of life and overall ratings were assessed. RESULTS: Both patients and professionals were predominantly positive about the home treatment, irrespective of the administration mode. The home-based treatment with Ig contributed to the patients' autonomy, participation, and perceived health. Patients and informal caregivers valued the treatment with a global rating of 8.84, and professionals with 8.32 (on a scale from 0 "worst" to 10 "best possible care"). SCIg and IVIg patient groups differed in their experiences regarding the accessibility and communication of the home treatment service. Furthermore, hospital professionals reported lower effects on quality of life than patients themselves. CONCLUSIONS: Home-based treatment with immunoglobulins is highly valued because of its personalized and effective character, meeting the needs and preferences of patients. Nonetheless, patients and professionals do have different perspectives on the value of this type of care.

Measuring client experiences in long-term care in the Netherlands: a pilot study with the Consumer Quality Index Long-term Care.

BACKGROUND: This study aims to describe the development, testing and optimization of a new standard instrument, the Consumer Quality Index (CQ-index) Long-term Care, for measuring client experiences with long-term care in the Netherlands. METHODS: Three versions of the CQ-index questionnaires and protocols for study sampling and data collection were developed, designed for interviews with residents of nursing or residential care homes and postal surveys among representatives of psychogeriatric residents and homecare clients. From July to November 2006 a pilot study was conducted among 2,697 clients of 68 nursing or residential care homes, 2,164 representatives of clients in 57 psychogeriatric care institutions, and 1,462 clients of 19 homecare organizations. We performed psychometric analyses and descriptive analyses, and evaluated the pilot study. RESULTS: The pilot study showed the feasibility and usability of the instruments, supported the multidimensionality of the questionnaires and showed first findings on client experiences and possibilities for quality improvement. Nine scales applied to all care settings: shared decision making, attitude and courtesy, information, body care, competence and safety of care, activities, autonomy, mental well-being, and availability of personnel. The pilot resulted in three optimized questionnaires and recommendations for nationwide implementation. CONCLUSIONS: The CQ-index Long-term Care provides a good basis to investigate the quality of nursing homes, residential care homes and homecare from the clients' perspective. This standardized instrument enables a nationwide comparison of the quality of long-term care for the purpose of transparency and quality assurance.

Patients' priorities for ambulatory hospital care centres. A survey and discrete choice experiment among elderly and chronically ill patients of a Dutch hospital.

OBJECTIVE: This study established patients' preferences regarding the facilities in an adjacent centre for ambulatory hospital care. It also identified determinants of patients' choice to visit this centre instead of the regional hospital. METHODS: A questionnaire survey among 1477 elderly and chronically ill people (response 72%) assessed patients' expectations regarding (a) quality of hospital care, (b) facilities in centres for ambulatory hospital care, and (c) future use of these centres. Additionally, 75 patients participated in discrete choice experiments about their decision to visit a centre for ambulatory hospital care or the regional hospital. RESULTS: Respondents prioritized facilities for examination and medical consultations in the ambulatory care centres. Half of the respondents also valued paramedic care, information desks and pharmacies as centre facilities. Most patients living near a future centre for ambulatory care would rather visit this centre than the regional hospital. However, they favoured seeing their familiar physician, short waiting lists and appointments scheduled consecutively on 1 day. If these aspects were not guaranteed at the adjacent centres, more patients chose to visit the hospital. CONCLUSIONS: Although patients value most facilities, they set clear priorities. Furthermore, this study showed three important conditions in the decision to visit an ambulatory care centre; (1) the possibility to see their familiar physician, (2) to have consecutive appointments, and (3) a short waiting list. These three factors were more important to patients than proximity. Thus, when choosing between a hospital and an adjacent centre for ambulatory care, quality aspects matter.

Unmet demands for health care among patients with rheumatoid arthritis: indications for underuse?

OBJECTIVE: To assess the prevalence of unmet health care demands among rheumatoid arthritis (RA) patients, and to determine if these unmet demands indicate underuse. METHODS: A total of 679 patients with RA participated in a questionnaire survey and clinical examination. Unmet health care demands and health care use were assessed for orthopedic care, allied health care, home care, and psychosocial care. Indications for underuse were determined by comparing health outcomes of patients with unmet health care demands and of health care users. RESULTS: Of the 679 patients, 28.7% had an unmet demand for 1 of the 4 services: 13.4% for allied health care, 9.7% for orthopedic care, 9.4% for home care, and 6.2% for psychosocial care. Underuse of allied health care, home care and psychosocial care was observed. CONCLUSION: Unmet demands for health care are frequent among RA patients. Most unmet demands indicate underuse. Health care professionals should therefore be more responsive to the demands of patients.

Selection bias due to non-response in a health survey among patients with rheumatoid arthritis.

BACKGROUND: Non-response may lead to bias in health(care) outcomes. METHODS: We compared respondents (n = 334) to a questionnaire survey among patients with rheumatoid arthritis with non-respondents (n = 68) and determined predictors of (non-)response. The bias in prevalence estimates of health characteristics and health care use was quantified. RESULTS: Self-reported pain and health care utilization were the most important predictors of (non-)response with respondents experiencing pain more often and more often using specific health care services. Bias concerned especially an underestimation of 'never having pain' (60%) and 'no contact with health care services' (51%). CONCLUSION: More insight into the phenomenon of non-response is important to assess disease burden and health care burden more precisely.