Exploring young patients' perspectives on rehabilitation care: methods and challenges of organizing focus groups for children and adolescents.

BACKGROUND: In research on quality of care, the experiences of children and (pre)adolescents are usually assessed by asking their parents. However, these young patients may have preferences of their own, and their experiences do not necessarily concur with those of their parents. Therefore, our research aimed to give young patients an opportunity to speak up for themselves. METHODS: Focus group meetings and online focus groups were organized for two age groups (8­11 and 12­15 years) of young patients from two Dutch rehabilitation centres, with the use of a tailored interview technique. The feasibility and applicability of both types of focus groups were assessed. RESULTS: For both types of focus groups, recruitment proved a major problem. The focus group meetings with (pre)adolescents proved both feasible and applicable in obtaining information regarding the preferences and experiences towards rehabilitation care. Regarding children's meetings, there were mixed results. The setting suited most of them, but some were more anxious. In general, online focus groups were less successful than expected for both age groups. CONCLUSIONS: Possibilities for enhancing the recruitment rate should be considered, as the low participation rates limited generalizability of focus group results. The tailored design proved useful for obtaining relevant input from (pre)adolescents through meetings, but, especially for children, repeated meetings or other locations (e.g. at home) could be considered. This may make participants more at ease. For both age groups, the online focus groups proved far less useful, in terms of participation.

Assessing quality of care in pediatric asthma: applicability of a revised version of the QUOTE-CNSLD questionnaire.

AIM: To establish the validity and applicability of a revised version of the QUality Of care Through the patient's Eyes-Chronic Non Specific Lung Disease (QUOTE-CNSLD) instrument in a population of children with controlled and partly controlled asthma. METHODS: Randomized controlled trial evaluating quality of care in three follow-up settings: follow-up by the general practitioner, the pediatrician, and the specialized asthma nurse, for a period of 2 years. RESULTS: One hundred and seven children were recruited, 45 from general practice and 62 from hospital practice. The revised QUOTE-CNSLD instrument completed by parents at baseline (T0), after 1 year (T1) and after 2 years (T2) showed that a process-, a structure-, and an asthma-specific domain could be deduced (Cronbach's α of 0.81, 0.82, and 0.62). A separate five-item "child-specific" questionnaire about their caregiver, completed by children, has a Cronbach's α of 0.88. The revised instrument could discriminate between quality of care in different follow-up settings for children with stable asthma, and the asthma-specific domain showed particularly discriminative properties. Quality aspects with potential for improvement could be derived from the scores in all three study groups. CONCLUSION: The revised QUOTE-CNSLD instrument is applicable in a pediatric population with stable asthma and it has discriminative value between different follow-up settings.

A patient-centred instrument for assessment of quality of breast cancer care: results of a pilot questionnaire.

BACKGROUND: In several breast cancer research environments, there was a need to develop a questionnaire that would (1) provide data on how breast cancer patients experience healthcare services, (2) address issues corresponding with patients' needs and expectations and (3) produce useful data for quality assessment and improvement projects aimed at breast cancer care. This article describes the first part of the quantitative process of item selection, instrument construction and optimisation based on the results of a pilot questionnaire. METHODS: Based on qualitative research, a pilot questionnaire with items formulated as "performance" and "importance" statements was developed and sent to all breast cancer patients operated on in the previous 3-15 months in five participating hospitals. Reduction criteria, exploratory factor analysis and reliability analysis were used as part of the process of instrument optimisation. RESULTS: Of the 637 questionnaires sent out, 299 (47%) were returned and 276 (43%) were used for analyses. Out of the 72 quality items included in the pilot questionnaire, 42 items did not meet the inclusion criteria for the revised version. The remaining items refer to the factors patient education regarding aspects related to postoperative treatment, services by the breast nurse, services by the surgeon, patient education regarding activities at home and patient education regarding aspects related to preoperative treatment (Cronbach α = 0.70-0.89). CONCLUSIONS: In this study, the number of items to be included in the self-administered questionnaire was reduced. The resulting set of items that determines patients' perceptions on quality of breast cancer care is easy to complete and enables anonymous responses. Further research can be aimed at establishing the reliability of the current questionnaire.

Patients' opinions on quality of care before and after implementation of a short stay programme following breast cancer surgery.

PURPOSE: To assess breast cancer patients' opinions on quality of care during an implementation study on short hospital stay, and to formulate patient inspired targets for further quality improvement based on results of the QUOTE (Quality of Care Through the Patients' Eyes) breast cancer instrument. RESULTS: Quality of patient education regarding activities at home was in need of improvement in both measurements. Quality of services delivered by the surgeon improved somewhat after implementation. Although quality of waiting and process times improved after implementation, there was still room for further improvement on these aspects. CONCLUSION: A breast cancer care programme in short stay was introduced while, on average, preserving quality of care as perceived by the patient. However, aspects regarding education on drains, prosthesis, exercises after surgery, survival rates, and waiting and process times require continuing attention to enhance patients' assessment of quality of care.

Medical oncology patients' preferences with regard to health care: development of a patient-driven questionnaire.

BACKGROUND: To improve quality of care for cancer patients, it is important to have an insight on the patient's view on health care and on their specific wishes, needs and preferences, without restriction and without influence of researchers and health care providers. The aim of this study was to develop a questionnaire assessing medical oncology patients' preferences for health care based on their own input. PATIENTS AND METHODS: Items were generated using 10 focus group interviews with 51 cancer patients. A preliminary questionnaire was handed out to 681 patients of seven Dutch departments of medical oncology. Explorative factor analysis was carried out on the 386 returned questionnaires (response 57%). RESULTS: Focus group interviews resulted in a preliminary questionnaire containing 136 items. Explorative factor analysis resulted in a definitive questionnaire containing 123 items (21 scales and eight single items). Patients rated expertise, safety, performance and attitude of physicians and nurses as the most important issues in cancer care. CONCLUSION: This questionnaire may be used to assess preferences of cancer patients and to come to a tailored approach of health care that meets patients' wishes and needs.

QUOTE-HIV: an instrument for assessing quality of HIV care from the patients' perspective.

BACKGROUND: An HIV-specific version of the QUOTE questionnaire was developed to measure the quality of care of patients infected with HIV from the patients' perspective. The consistency and validity of the questionnaire was assessed. METHODS: Focus group discussions were held to select aspects for inclusion in the questionnaire that are important to patients with HIV. Item and inter-item analysis, factor analysis, and reliability analysis were performed to test the internal consistency and validity of the questionnaire. RESULTS: Twenty seven items (13 generic and 14 HIV specific) were used in the QUOTE-HIV questionnaire. Separate factor analyses of the generic and HIV specific aspects indicated that each loaded onto a single factor. The internal consistency of the total questionnaire was good (Cronbach's alpha >/=0.80). Feasibility of the questionnaire was shown by the diversity of importance and performance scores for general practitioners as well as for HIV specialists and AIDS nursing consultants. CONCLUSION: The QUOTE-HIV questionnaire is a useful instrument for measuring the quality of care from the perspective of HIV infected patients.

[Availability and services of dentists under pressure?]. / Beschikbaarheid en dienstverlening van tandartsen onder druk?

Signals in society point to a shortage of dentists in the Netherlands. Aim of this study is to explore how patients, against the background of supposed shortage, judge the availability and services of dentists. For this research the 'Consumerspanel Health Care', in which 1.395 persons participate, was asked to complete a postal questionnaire. Response rate was 73.8%. Results show that there are presently no serious problems for patients with the services of dentist due to the presumed lack of dentists. The patients were very satisfied with the accessibility and the services delivered by the dentists in the Netherlands. With the availability there seem to be some possible problems.

Quality of care from the perspective of the cataract patient: the reliability and validity of the QUOTE-cataract.

BACKGROUND/AIMS: To assess reliability and validity of the QUOTE-cataract, a questionnaire that measures the quality of care from the perspective of cataract patients. METHODS: The QUOTE-cataract was tested in a multicentre study among 540 cataract patients in three different hospitals. Reliability was represented by internal consistency (Cronbach's alpha), and repeatability (intraclass correlation coefficient (ICC)). Validity was evaluated qualitatively and by factor analyses. RESULTS: A strong internal consistency coefficient (0.89), and high repeatability (ICC = 0.76) demonstrated good reliability. Content validity was assured by involvement of patients in the development of the questionnaire. Factor analysis confirmed an underlying taxonomy of generic and disease specific items. CONCLUSION: The QUOTE-cataract has good reliability and provides a valid assessment of quality of care in cataract surgery.

Quality of health care in inflammatory bowel disease: development of a reliable questionnaire (QUOTE-IBD) and first results.

OBJECTIVES: As inflammatory bowel disease is a chronic disorder, usually with an early onset in life, quality of care plays an important role for patients. The aim of this study was to develop a questionnaire to measure quality of care through the eyes of patients with inflammatory bowel disease. METHODS: Ten generic questions were already available because the questionnaire is based on an existing instrument. Patients with inflammatory bowel disease in seven countries were involved in the development of additional disease-specific items. Validation and first field testing of the total questionnaire (QUOTE-IBD) was performed in The Netherlands. RESULTS: A total of 380 patients cooperated in the development of 13 disease-specific items, with high internal reliability (Cronbach's alpha = 0.83). Another 162 patients were involved in validating and testing of the QUOTE-IBD, which consists of 23 items in total. Pearson's correlation coefficient between QUOTE-IBD and visual analog scale scores of health care items was 0.55. Intraclass correlation coefficient of two assessments was 0.64. First testing showed that patients gave relatively poor marks to some part of health care services, such as providing information about extraintestinal complaints and the psychological as well as physical approach to complaints. CONCLUSIONS: A short, valid, reliable questionnaire was developed to measure the opinions of patients with inflammatory bowel disease on quality of health care. The QUOTE-IBD can be used for identification of areas for improvement, with the aim of optimizing health care in inflammatory bowel disease.

Quality of care from the perspective of elderly people: the QUOTE-elderly instrument.

BACKGROUND: patient views on the quality of care are usually assessed by means of patient satisfaction questionnaires. AIM: to develop an instrument that would: (i) produce data related to the expectations and experiences of noninstitutionalized elderly people, (ii) contain items that had been formulated in collaboration with elderly people, (iii) measure quality from the perspective of the users of health care services and (iv) produce data on generic quality aspects and quality aspects specifically related to the needs of elderly people. METHODS: we developed the instrument for measuring quality of care from the perspective of non-institutionalized elderly people (QUOTE-Elderly) by using a combination of qualitative and quantitative methods. We obtained empirical data on the opinions and experiences of 338 elderly people. We evaluated the taxonomy of the instrument, internal consistency of (sub)scales and the feasibility of the instrument using explorative and confirmative factor analyses and reliability analysis. RESULTS: using scale optimization, we produced a self-administered questionnaire on quality of health care from the perspective of elderly people. This contains scientific characteristics and provides specific information for practical quality-assurance policies.

Assessing patients' priorities and perceptions of the quality of health care: the development of the QUOTE-Rheumatic-Patients instrument.

Patient views on the quality of care have always been assessed by means of patient satisfaction questionnaires. The objectives of this study were to develop an instrument that would: (1) produce more specific data on health care services; (2) produce data that are related to the needs and expectations of individual clients; (3) contain items that had been formulated in collaboration with patients; (4) measure quality of health care services from the perspective of customers; (5) produce data on generic items and on disease-specific items of health care services. The instrument, developed for measuring the quality of care from the perspective of non-institutionalized rheumatic patients (QUOTE-Rheumatic-Patients), was evaluated in 425 non-institutionalized patients suffering from rheumatic diseases. The internal consistency of the subscales, the presumed factor structure and the feasibility of the instrument were evaluated. The development of this instrument resulted in a self-administered questionnaire on the quality of health care from the perspective of non-institutionalized rheumatic patients, which contains proper scientific characteristics and provides specific information for practical quality assurance policies.

Patient satisfaction with the general practitioner: a two-level analysis.

OBJECTIVES: The authors examine how patient satisfaction with health care providers relates to either the individual characteristics of respondents or the characteristics of health care providers and the structural setting in which they work. METHODS: Measures of three dimensions of patient satisfaction with the general practitioner (GP)--accessibility, interpersonal relationship, information given--were derived from an existing data set. Patients were nested with GPs. Multilevel analysis was used as the analyzing technique. RESULTS: Between 90% and 95% of the variance in patient satisfaction scores is at the patient level, whereas the remaining 5% to 10% is at the GP or practice level. At the patient level, in addition to the usual predictor variables such as age and morbidity, which explain approximately 5% of the variance at this level, previous experiences with the general practitioner in the form of misunderstandings or incidents may play an important role in the emergence of dissatisfaction among patients. CONCLUSIONS: This study demonstrated the usefulness of multilevel analysis in studying patient satisfaction scores. Findings indicate that the effectiveness of strategies directed at health care providers or services and aiming to improve the quality of care through the patient's eyes can be questioned when these strategies are based on general satisfaction scores only. More attention should be paid to the interaction process between patient and GP.

Assessing noninstitutionalized asthma and COPD patients' priorities and perceptions of quality of health care: the development of the QUOTE-CNSLD instrument.

Patient judgments on the quality of health care services have become increasingly important. This research describes the development and empirical testing of an instrument that measures quality of health care services from the perspective of noninstitutionalized patients. The instrument was developed in close collaboration with noninstitutionalized patients with chronic nonspecific lung diseases (asthma and COPD), rheumatic diseases, and disabled and elderly patients. Four instruments were developed with a common generic part and four disease-specific parts. This article focuses on the psychometric properties and the practical use of outcomes for quality assurance policies of the instrument for patients with chronic nonspecific lung diseases.

'Burnout' among Dutch midwives.

OBJECTIVE: to determine the effect of workload on 'burnout' having considered work capacity. DESIGN: cross-sectional study. SETTING: Dutch community midwives in independent practice. PARTICIPANTS: 200 Dutch community midwives. MEASUREMENTS: three-week diary recordings, a questionnaire on practice and personal characteristics, and a questionnaire on 'burnout', social support and coping style. FINDINGS: differences in 'burnout' can be explained partly by the midwife's workload and partly by her work capacity. A high workload may lead to 'burnout' when a midwife is unable to handle stressful situations. KEY CONCLUSIONS: when a higher percentage of the supervised births occurred at the client's own home instead of during a short-stay hospital visit, the chances of 'burnout' are lower. IMPLICATIONS FOR PRACTICE: changes in the organisation of Dutch community midwifery care may contribute to the reduction of 'burnout'. 'Burnout' is a complex phenomenon influenced both by individual and organisational factors. When formulating policy to reduce 'burnout' among midwives specific work-related factors must be considered and emphasis be placed on the importance of personal resources.

Hospital or general practice? Results of two experiments limiting the number of self referrals of patients with injuries to hospitals in The Netherlands.

OBJECTIVE: To describe the results of two Dutch experiments aimed at limiting the number of self referrals to accident and emergency (A&E) departments of a newly opened hospital. METHODS: Basic design for both field experiments was a one group test-retest study, with the opening of a new hospital being the experimental factor. Data refer (1) to the number of patient contacts for acute somatic and non-somatic professional help with traumata and intoxications filled in on contact registration forms, and (2) to patient reports based on written questionnaires and interviews by telephone. RESULTS: Both studies show that it is possible to limit the number of self referrals, although it is important to be aware of possible side effects. The solution chosen in one of the cities, with patients visiting the A&E department being sent back to a general practitioner, was highly effective but resulted in a series of complaints from the public. This forced the authorities to abandon their original policy. The model chosen in the other city, with two specialized health centres serving as an alternative for the free A&E department of the new hospital, was somewhat less successful in preventing patients from going directly to a hospital, but was much more acceptable for the public. CONCLUSIONS: Both studies showed that controlling the number of self referrals to the A&E departments of hospitals is possible. However, the more rigid the model, the more difficult it will be to have this model accepted by patients. Based on arguments like cost-effectiveness, a better solution might be not to discourage people from going to the hospital with minor injuries, but to integrate primary health care (PHC) and hospital facilities.

Quality of care and patient satisfaction: a review of measuring instruments.

Surveying the literature on the assessment of quality of care from the patient's perspective, the concept has often been operationalized as patient satisfaction. Patient satisfaction has been a widely investigated subject in health care research, and dozens of measuring instruments were developed during the past decade. Quality of care from the patient's perspective, however, has been investigated only very recently, and only a few measuring instruments have explicitly been developed for the assessment of quality of care from the patient's perspective. The authors consider patient satisfaction as an indicator of quality of care from the patient's perspective. This review is concerned with the question of whether any reliable and valid instruments have been developed to measure quality of care from the patient's perspective.