Views and experiences of ethnic minority diabetes patients on dietetic care in the Netherlands - a qualitative study.

BACKGROUND: Diabetes type 2 is more prevalent in people from ethnic minorities in the Netherlands, and outcomes of care are worse compared with other Dutch people. Dieticians experience difficulties in managing these groups in self-management and adherence to dietary advice. The aim of this study was to explore the views regarding a healthy diet and dietetic care among ethnic minority type 2 diabetes patients. METHODS: Semi-structured interviews were held with 12 migrants with diabetes from Turkey, Morocco, Iraq and Curacao, who visited a dietician. Inclusion went on until saturation was reached. The interview guide was based on the Attitudes, Social influence and self-Efficacy (ASE) model and Kleinman's explanatory model of illness. Interviews were held in the language preferred by the respondent. Transcripts were coded and thematically analyzed. RESULTS: Several respondents expected a more rigorous, directive and technical approach of the dietician. All respondents acknowledged the importance of a healthy diet. What they considered healthy was determined by culturally influenced ideas about health benefits of specific foods. Important hindrances for dietary change were lack of self-efficacy and social support. Social influences were experienced both as supportive and a hindrance. CONCLUSIONS: Migrant diabetic patients' opinions about healthy food are determined by culturally influenced ideas rather than by dietary guidelines. Dutch dietary care is not tailored to the needs of these patients and should take into account migrants' expectations, cultural differences in dietary habits and specifically address the role of family.

Dutch citizens of Turkish origin who utilize healthcare services in Turkey: a qualitative study on motives and contextual factors.

BACKGROUND: Dutch residents of Turkish origin frequently utilize healthcare in Turkey. METHODS: To investigate their motives for doing so, we conducted a qualitative study among these healthcare users using semi-structured interviews. We complemented this with informal conversations with Turkish healthcare providers and observations at the registration offices and waiting rooms of outpatient clinics in several Turkish hospitals. RESULTS: Respondents believed their perceived needs for referral to specialist care and diagnostic assessments to quantify their health were not being met in the Netherlands. CONCLUSIONS: These mismatches in expectations of what constitutes "good care" led to dissatisfaction with Dutch primary care. Consequently, respondents utilized healthcare in Turkey if the opportunity arose, and were encouraged in this by their social networks. Establishing cross-border communication between healthcare providers is necessary, because there is currently no continuity of care for cross-border patients.

Quality of life assumptions determine which cervical cancer screening strategies are cost-effective.

Quality-adjusted life years are used in cost-effectiveness analyses (CEAs). To calculate QALYs, a "utility" (0-1) is used for each health state induced or prevented by the intervention. We aimed to estimate the impact of quality of life (QoL) assumptions (utilities and durations of health states) on CEAs of cervical cancer screening. To do so, 12 alternative sets of utility assumptions were retrieved from published cervical cancer screening CEAs. Two additional sets were based on empirical QoL data that were integrally obtained through two different measures (SF-6D and EQ-5D) from eight groups of women (total n = 3,087), from invitation for screening to diagnosis with cervical cancer. Per utility set we calculated the number of quality-adjusted days lost (QADL) for each relevant health state in cervical cancer screening, by multiplying the study-specific assumed disutilities (i.e., 1-utility) with study-specific durations of the loss in QoL, resulting in 14 "QADL-sets." With microsimulation model MISCAN we calculated cost-effectiveness of 342 alternative screening programs (varying in primary screening test [Human Papillomavirus (HPV) vs. cytology], starting ages, and screening interval) for each of the 14 QADL-sets. Utilities used in CEAs appeared to differ largely. We found that ten QADL-sets from the literature resulted in HPV and two in cytology as preferred primary test. The SF-6D empirical QADL-set resulted in cytology and the EQ-5D one in HPV as preferred primary test. In conclusion, assumed utilities and health state durations determine cost-effectiveness of cervical cancer screening. Also, the measure used to empirically assess utilities can be crucial for CEA conclusions.

Adherence to colorectal cancer screening: four rounds of faecal immunochemical test-based screening.

BACKGROUND: The effectiveness of faecal immunochemical test (FIT)-based screening programs is highly dependent on consistent participation over multiple rounds. We evaluated adherence to FIT screening over four rounds and aimed to identify determinants of participation behaviour. METHODS: A total of 23 339 randomly selected asymptomatic persons aged 50-74 years were invited for biennial FIT-based colorectal cancer screening between 2006 and 2014. All were invited for every consecutive round, except for those who had moved out of the area, passed the upper age limit, or had tested positive in a previous screening round. A reminder letter was sent to non-responders. We calculated participation rates per round, response rates to a reminder letter, and differences in participation between subgroups defined by age, sex, and socioeconomic status (SES). RESULTS: Over the four rounds, participation rates increased significantly, from 60% (95% CI 60-61), 60% (95% CI 59-60), 62% (95% CI 61-63) to 63% (95% CI 62-64; P for trend<0.001) with significantly higher participation rates in women in all rounds (P<0.001). Of the 17 312 invitees eligible for at least two rounds of FIT screening, 12 455 (72%) participated at least once, whereas 4857 (28%) never participated; 8271 (48%) attended all rounds when eligible. Consistent participation was associated with older age, female sex, and higher SES. Offering a reminder letter after the initial invite in the first round increased uptake with 12%; in subsequent screening rounds this resulted in an additional uptake of up to 10%. CONCLUSIONS: In four rounds of a pilot biennial FIT-screening program, we observed a consistently high and increasing participation rate, whereas sending reminders remain effective. The substantial proportion of inconsistent participants suggests the existence of incidental barriers to participation, which, if possible, should be identified and removed.

Accessibility of standardized information of a national colorectal cancer screening program for low health literate screening invitees: A mixed method study.

OBJECTIVE: To explore the accessibility of standardized printed information materials of the national Dutch colorectal cancer screening program among low health literate screening invitees and to assess the effect of the information on their knowledge about colorectal cancer and the screening program. METHODS: Linguistic tools were used to analyze the text and design characteristics. The accessibility, comprehensibility and relevance of the information materials were explored in interviews and in observations (n=25). The effect of the information on knowledge was assessed in an online survey (n=127). RESULTS: The materials employed a simple text and design. However, respondents expressed problems with the amount of information, and the difference between screening and diagnostic follow-up. Knowledge significantly increased in 10 out of 16 items after reading the information but remained low for colorectal cancer risk, sensitivity of testing, and the voluntariness of colorectal cancer screening. CONCLUSION: Despite intelligible linguistic and design characteristics, screening invitees with low health literacy had problems in accessing, comprehending and applying standard information materials on colorectal cancer screening, and lacked essential knowledge for informed decision-making about participation. PRACTICE IMPLICATIONS: To enable equal access to informed decision-making, information strategies need to be adjusted to the skills of low health literate screening invitees.

Socioeconomic Differences in Informed Decisions About Down Syndrome Screening: A Systematic Review and Research Agenda.

Supporting pregnant women to make informed choices about Down syndrome screening is widely endorsed. We reviewed the literature on: (a) the association between socioeconomic position and informed choices and decision-making about Down syndrome screening, and (b) the possible mediating variables (e.g., health literacy, numeracy skills, behavioral and communication variables) that might explain the relationship. EMBASE, MEDLINE, PubMed, CINAHL, and PsycINFO were searched from January 1999 to September 2014. The methodological quality of studies was determined by predefined criteria regarding the research aims, study design, study population and setting, measurement tools, and statistical analysis. A total of 33 studies met the inclusion criteria. Women from lower socioeconomic groups experience greater difficulties making informed choices about Down syndrome screening compared to women from higher socioeconomic groups. Most studies focus on individual dimensions of informed decision-making rather than assessing elements in conjunction with one another. Few studies have explored why there are socioeconomic differences in women's ability to make informed screening decisions. Future work is needed to identify mediating variables in this pathway. Systematic evidence-based intervention development to improve communication, understanding, and decision-making about Down syndrome screening is needed to ensure that women have an equal opportunity to make an informed choice about screening regardless of their socioeconomic position.

Ethnic Inequalities in Rectal Cancer Care in a Universal Access Healthcare System: A Nationwide Register-Based Study.

BACKGROUND: Ethnic inequalities in colorectal cancer care were reported previously in the United States. Studies specifically reporting on ethnic inequalities in rectal cancer care are limited. OBJECTIVE: This study aimed to explore potential ethnic inequalities in rectal cancer care in the Netherlands. DESIGN: This was a nationwide, population-based observational study. SETTINGS: The study linked data of the Netherlands Cancer Registry with the Dutch population registry and the Social Statistics Database of Statistics Netherlands. Data were analyzed using stepwise multivariable logistic regression models. PATIENTS: All of the patients diagnosed with rectal carcinoma in 2003-2011 in the Netherlands (N = 27,159) were included. MAIN OUTCOME MEASURES: We analyzed 2 rectal cancer treatment indicators (preoperative radiotherapy and sphincter-sparing surgery) and 2 indicators of short-term outcome of rectal cancer surgery (anastomotic leakage and 30-day postoperative mortality). RESULTS: Patients of Western non-Dutch and non-Western origin with rectal cancer were significantly younger and had a higher tumor stage than ethnic Dutch patients. Considering preoperative radiotherapy, anastomotic leakage, and 30-day postoperative mortality, no ethnic inequalities were detected. After adjustment for age, sex, disease characteristics, and socioeconomic status, Western non-Dutch and non-Western patients were significantly more likely to receive sphincter-sparing surgery than ethnic Dutch patients (OR = 1.27 (95% CI, 1.04-1.55) and OR = 1.57 (95% CI, 1.02-2.42)). LIMITATIONS: This study was limited by the relatively low numbers of non-Dutch patients with rectal cancer. CONCLUSIONS: Non-Dutch ethnic origin was associated with a higher rate of sphincter-sparing surgery. The absence of ethnic inequalities in preoperative radiotherapy, anastomotic leakage, and 30-day postoperative mortality suggests that ethnic minority patients have similar chances of optimal rectal cancer care outcomes as Dutch patients.

Burden of waiting for surveillance CT colonography in patients with screen-detected 6-9 mm polyps.

PURPOSE: We assessed the burden of waiting for surveillance CT colonography (CTC) performed in patients having 6-9 mm colorectal polyps on primary screening CTC. Additionally, we compared the burden of primary and surveillance CTC. MATERIALS AND METHODS: In an invitational population-based CTC screening trial, 101 persons were diagnosed with <3 polyps 6-9 mm, for which surveillance CTC after 3 years was advised. Validated questionnaires regarding expected and perceived burden (5-point Likert scales) were completed before and after index and surveillance CTC, also including items on burden of waiting for surveillance CTC. McNemar's test was used for comparison after dichotomization. RESULTS: Seventy-eight (77 %) of 101 invitees underwent surveillance CTC, of which 66 (85 %) completed the expected and 62 (79 %) the perceived burden questionnaire. The majority of participants (73 %) reported the experience of waiting for surveillance CTC as 'never' or 'only sometimes' burdensome. There was almost no difference in expected and perceived burden between surveillance and index CTC. Waiting for the results after the procedure was significantly more burdensome for surveillance CTC than for index CTC (23 vs. 8 %; p = 0.012). CONCLUSION: Waiting for surveillance CTC after primary CTC screening caused little or no burden for surveillance participants. In general, the burden of surveillance and index CTC were comparable. KEY POINTS: • Waiting for surveillance CTC within a CRC screening caused little burden • The vast majority never or only sometimes thought about their polyp(s) • In general, the burden of index and surveillance CTC were comparable • Awaiting results was more burdensome for surveillance than for index CTC.

Role of relatives of ethnic minority patients in patient safety in hospital care: a qualitative study.

OBJECTIVE: Relatives of ethnic minority patients often play an important role in the care process during hospitalisation. Our objective was to analyse the role of these relatives in relation to the safety of patients during hospital care. SETTING: Four large urban hospitals with an ethnic diverse patient population. PARTICIPANTS: On hospital admission of ethnic minority patients, 20 cases were purposively sampled in which relatives were observed to play a role in the care process. OUTCOME MEASURES: We used documents (patient records) and added eight cases with qualitative interviews with healthcare providers, patients and/or their relatives to investigate the relation between the role of relatives and patient safety. An inductive approach followed by selective coding was used to analyse the data. RESULTS: Besides giving social support, family members took on themselves the role of the interpreter, the role of substitutes of the patient and the role of care provider. The taking over of these roles can have positive and negative effects on patient safety. CONCLUSIONS: When family members take over various roles during hospitalisation of a relative, this can lead to a safety risk and a safety protection for the patient involved. Although healthcare providers should not hand over their responsibilities to the relatives of patients, optimising collaboration with relatives who are willing to take part in the care process may improve patient safety.

The interpreter as co-interviewer: the role of the interpreter during interviews in cross-language health research.

OBJECTIVE: Interviews with ethnic minority patients provide a rich source of data to understand their perspectives of disease and its management. Language barriers are, however, often a problem so interpreters need to be used. We explored the impact of the interpreter on cross-language interviews between researchers and respondents. METHODS: Secondary analysis of four interviews between researchers and patients involving professional interpreters. RESULTS: Interpreters were actively involved and influenced the interview in several ways: they assumed the interviewer's communicative role, edited information; initiated information-seeking, took over control of the interview, and took over the respondent's role. While the interpreter supported the interviewer, they posed risks to the quality of the interview. CONCLUSION: Researchers need to be aware of the influence of interpreters. Researchers should instruct interpreters carefully about their roles though they may benefit from interpreters' strategies to support them.

Effect of socioeconomic status on psychosocial problems in 5- to 6-year-old preterm- and term-born children: the ABCD study.

This study aimed at analysing the association between socioeconomic status (SES) and psychosocial problems in preterm- and term-born children. Scores of mothers and teachers on the Strengths and Difficulties Questionnaire (SDQ) regarding 217 preterm-born children (<37 weeks' gestation, mean 34 weeks) were compared with 4336 term-born children in the Amsterdam Born Children and their Development (ABCD) cohort at age 5-6 years. Associations between SDQ scores and SES (maternal education and perceived income adequacy) were examined with multivariate linear regression analysis. The mean mother-reported total difficulties score was significantly higher for preterm children (6.1 ± 4.7) than for term children (5.2 ± 4.1). After covariate adjustment, this difference was 0.5 (95 % CI 0.0-1.0). For preterm children 16.1 % of the mothers reported psychosocial problems compared with 10.1 % for term children. Lower maternal education and lower income adequacy were significantly related to higher SDQ scores of mothers and teachers. Differences in mothers' SDQ score between preterm and term children were larger in the high-education (Δ0.9, 95 % CI 0.2-1.5) and high-income group (Δ0.9, 95 % CI 0.3-1.6). No significant differences were found between preterm and term children in the SDQ scores reported by teachers. Low level of maternal education and inadequate income showed a much stronger association with psychosocial problems than preterm birth. No combined effect of low SES and preterm birth was found. This study corroborates the evidence for the strength of the disadvantageous effects of low SES on early psychosocial development.

Knowledge, attitudes and beliefs regarding colorectal cancer screening among ethnic minority groups in the Netherlands - a qualitative study.

BACKGROUND: Research has shown that ethnic minority groups are less likely to participate in colorectal cancer (CRC) screening than the majority population and hence less likely to be diagnosed at an early stage when treatment is potentially more successful. OBJECTIVE: To explore knowledge, attitudes and beliefs regarding CRC and CRC screening among ethnic minority groups in the Netherlands. DESIGN: We conducted qualitative interviews with 30 first-generation immigrants born in Turkey, Morocco and Surinam. We based the topic guide on the health belief model. Framework analysis was used to analyse our data. RESULTS: Although knowledge of CRC and CRC screening was limited, all respondents felt susceptible to CRC. CRC screening was perceived to mainly benefit those individuals with poor health and symptoms. Although most respondents had a positive attitude towards CRC screening, knowledge about its potential harms was limited and self-efficacy to participate was low. Adult children acted as important mediators in providing access to information. The language barrier and low literacy formed serious barriers to informed participation in CRC screening. CONCLUSION: To ensure that all eligible individuals, including ethnic minority groups, have equal opportunities to informed participation in screening, targeted communication strategies should be developed, such as oral and visual channels, and face-to-face communication in the mother tongue. This will help ethnic minority groups to make an informed decision about participation in CRC screening.

Social outcomes in adult survivors of childhood cancer compared to the general population: linkage of a cohort with population registers.

OBJECTIVE: Self-reported data show differences in social outcomes (not being married/having a registered partnership; not living independently; using social benefits) for childhood cancer survivors compared with their peers. We aimed to determine differences in these social outcomes between survivors and the general population using national register data and explored associated risk factors. METHODS: We performed medical record linkage between a single-centre cohort of 1768 ≥ 5-year survivors of childhood cancer (diagnosed 1966-2001) and two national registers (1999-2011) and obtained a random reference sample matched on gender and year of birth per survivor. We used multivariable logistic regression to calculate in adult survivors of childhood cancer (born before 1990) the odds of the specified social outcomes at the end of follow-up in both groups. Within the survivors, we analysed risk factors for the social outcomes. RESULTS: We retrieved data from 1283 adult childhood cancer survivors and 25 082 reference persons. Survivors had higher odds (odds ratio; 95% confidence interval) of not being married (1.2; 1.07-1.42), not living independently (1.7; 1.41-2.00) and using social benefits (2.3; 1.98-2.69) compared with reference persons. Radiotherapy to head and/or neck, and an original central nervous system tumour diagnosis negatively influenced all social outcomes examined in childhood cancer survivors. CONCLUSIONS: National register data show differences between social outcomes in childhood cancer survivors and the general population, especially for survivors treated with radiotherapy to head and/or neck and those originally diagnosed with central nervous system tumours. Development and implementation of effective targeted support strategies to improve social outcomes of childhood cancer survivors needs consideration. Copyright © 2015 John Wiley & Sons, Ltd.

Implications of health as 'the ability to adapt and self-manage' for public health policy: a qualitative study.

BACKGROUND: To explore the implications for public health policy of a new conceptualisation of health as 'The ability to adapt and to self-manage, in the face of social, physical and emotional challenges'. METHODS: Secondary qualitative data analysis of 28 focus group interviews, with 277 participants involved in public health and healthcare, on the future of the Dutch healthcare system. WHO's essential public health operations (EPHOs) were used as a framework for analysis. RESULTS: Starting from the new concept of health, participants perceived health as an individual asset, requiring an active approach in the Dutch population towards health promotion and adaptation to a healthy lifestyle. Sectors outside healthcare and public health were considered as resources to support individual lifestyle improvement. Integrating prevention and health promotion in healthcare is also expected to stimulate individuals to comply with a healthy lifestyle. Attention should be paid to persons less skilled to self-manage their own health, as this group may require a healthcare safety net. The relationship between individual and population health was not addressed, resulting in little focus on collective prevention to achieve health. CONCLUSIONS: The new concept of health as a basis for changes in the healthcare system offers opportunities to create a health-promoting societal context. However, inequalities in health within the general population may increase when using the new concept as an operationalisation of health. For public health, the main challenge is to maintain focus on the collective socioeconomic and environmental determinants of health and disease and, thereby, preserve collective prevention.

Barriers in access to home care services among ethnic minority and Dutch elderly--a qualitative study.

BACKGROUND: Ethnic minority elderly have a high prevalence of functional limitations and chronic conditions compared to Dutch elderly. However, their use of home care services is low compared to Dutch elderly. OBJECTIVES: Explore the barriers to access to home care services for Turkish, Moroccan Surinamese and ethnic Dutch elderly. DESIGN: Qualitative semi-structured group interviews and individual interviews. SETTING: The Netherlands. PARTICIPANTS: Seven group interviews (n=50) followed by individual interviews (n=5) were conducted, in the preferred language of the participants. METHODS: Results were ordered and reported according to a framework of access to health care services. This framework describes five dimensions of accessibility to generate access to health care services, from the perspective of the users: ability to perceive health needs, ability to seek health care, ability to reach, ability to pay and ability to engage. RESULTS: This study shows that while barriers are common among all groups, several specific barriers in access to home care services exist for ethnic minority elderly. Language and communication barriers as well as limited networks and a preference for informal care seem to mutually enforce each other, resulting in many barriers during the navigation process to home care. CONCLUSION: In order to provide equal access to home care for all who need it, the language and communication barriers should be tackled by home care services and home care nurses.

Language barriers and patient safety risks in hospital care. A mixed methods study.

INTRODUCTION: A language barrier has been shown to be a threat for quality of hospital care. International studies highlighted a lack of adequate noticing, reporting, and bridging of a language barrier. However, studies on the link between language proficiency and patient safety are scarce, especially in Europe. The present study investigates patient safety risks due to language barriers during hospitalization, and the way language barriers are detected, reported, and bridged in Dutch hospital care. METHODS: We combined quantitative and qualitative methods in a sample of 576 ethnic minority patients who were hospitalized on 30 wards within four urban hospitals. The nursing and medical records of 17 hospital admissions of patients with language barriers were qualitatively analyzed, and complemented by 12 in-depth interviews with care providers and patients and/or their relatives to identify patient safety risks during hospitalization. The medical records of all 576 patients were screened for language barrier reports. The results were compared to patients' self-reported Dutch language proficiency. The policies of wards regarding bridging language barriers were compared with the reported use of interpreters in the medical records. RESULTS: Situations in hospital care where a language barrier threatened patient safety included daily nursing tasks (i.e. medication administration, pain management, fluid balance management) and patient-physician interaction concerning diagnosis, risk communication and acute situations. In 30% of the patients that reported a low Dutch proficiency, no language barrier was documented in the patient record. Relatives of patients often functioned as interpreter for them and professional interpreters were hardly used. DISCUSSION: The present study showed a wide variety of risky situations in hospital care for patients with language barriers. These risks can be reduced by adequately bridging the language barrier, which, in the first place, demands adequate detecting and reporting of a language barrier. This is currently not sufficiently done in most Dutch hospitals. Moreover, new solutions to bridge language barriers are needed for situations such as routine safety checks performed by nurses, in which a professional or even informal interpreter is not feasible.

How should health service organizations respond to diversity? A content analysis of six approaches.

BACKGROUND: Health care organizations need to be responsive to the needs of increasingly diverse patient populations. We compared the contents of six publicly available approaches to organizational responsiveness to diversity. The central questions addressed in this paper are: what are the most consistently recommended issues for health care organizations to address in order to be responsive to the needs of diverse groups that differ from the majority population? How much consensus is there between various approaches? METHODS: We purposively sampled six approaches from the US, Australia and Europe and used qualitative textual analysis to categorize the content of each approach into domains (conceptually distinct topic areas) and, within each domain, into dimensions (operationalizations). The resulting classification framework was used for comparative analysis of the content of the six approaches. RESULTS: We identified seven domains that were represented in most or all approaches: organizational commitment, empirical evidence on inequalities and needs, a competent and diverse workforce, ensuring access for all users, ensuring responsiveness in care provision, fostering patient and community participation, and actively promoting responsiveness. Variations in the operationalization of these domains related to different scopes, contexts and types of diversity. For example, approaches that focus on ethnic diversity mostly provide recommendations to handle cultural and language differences; approaches that take an intersectional approach and broaden their target population to vulnerable groups in a more general sense also pay attention to factors such as socio-economic status and gender. CONCLUSIONS: Despite differences in labeling, there is a broad consensus about what health care organizations need to do in order to be responsive to patient diversity. This opens the way to full scale implementation of organizational responsiveness in healthcare and structured evaluation of its effectiveness in improving patient outcomes.

Enumerating the preventive youth health care workforce: Size, composition and regional variation in the Netherlands.

The progress in workforce planning in preventive youth health care (YHC) is hampered by a lack of data on the current workforce. This study aimed to enumerate the Dutch YHC workforce. To understand regional variations in workforce capacity we compared these with the workforce capacity and the number of children and indicators of YHC need per region. A national survey was conducted using online questionnaires based on WHO essential public health operations among all YHC workers. Respondents (n=3220) were recruited through organisations involved in YHC (participation: 88%). The YHC workforce is multi-disciplinary, 62% had >10 years working experience within YHC and only small regional variations in composition existed. The number of children per YHC professional varied between regions (range 688-1007). All essential public health operations were provided and could be clustered in an operational or policy profile. The operational profile prevailed in all regions. Regional differences in the number of children per YHC professional were unrelated to the indicators of YHC need. The essential public health operations provided by the YHC workforce and the regional variations in children per YHC professional were not in line with indicators of YHC needs, indicating room for improvement of YHC workforce planning. The methodology applied in this study is probably relevant for use in other countries.