Marjan J. Westerman

Factors related to high and low levels of drug adherence according to patients with type 2 diabetes

Objective Adherence to medication in patients with type 2 diabetes varies widely, yet the factors that influence adherence according to patients are not fully known. The aim of this study is to explore both factors related to high and lower levels of adherence that patients with type 2 diabetes experienced in their medication use. Setting Primary care in the Netherlands. Method Qualitative, semi-structured interviews were performed in 20 patients with type 2 diabetes. Interviews were audio-taped and transcribed verbatim. Transcripts were coded and analysed using content analysis and constant comparison. Main outcome measure experiences and opinions of patients concerning factors related to high and lower levels of adherence. Results Comparable aspects influenced drug adherence in more and less adherent patients. Four aspects that influenced adherence to medication emerged from the interviews: (1) information about the prescribed medication, (2) experience with medication and complications with use, (3) social support for medication behaviour and (4) routines in medication behaviour. Experience with medication and social support for medication behaviour were related to high levels of adherence in some patients, and to lower levels of adherence in others. Complicated medication regimens were mainly related to lower adherence, while social support and routines in medication behaviour were related to higher adherence. Conclusions Routines in medication behaviour were related to higher drug adherence. Patient education should not only address information about the disease and medication, but also more practical issues concerning drug intake. Hence, to improve drug adherence in patients with type 2 diabetes, pharmaceutical care might be aimed at the counselling of patients to organise drug use in their daily schedule.

Problems eliciting cues in SEIQoL-DW : quality of life areas in small-cell lung cancer patients

The Schedule of Individual Quality of Life - Direct Weighting (SEIQoL-DW) is an individualized approach in the measurement of quality of life in which patients can choose, value and weight five areas that they consider important for their quality of life. Although a number of studies have reported on the feasibility of the administration of the instrument, little is known about how patients choose and define these five areas, the so-called ‘cues’. This article describes problems in the elicitation of cues experienced in a qualitative, exploratory study among small-cell lung cancer patients (n = 31) in the Netherlands. Cues originate from patient-interviewer interaction which is best described as an area of tension between the patient’s answers and the instrument instructions. As a result, the interviewer may inadvertently introduce bias while attempting to elicit cues, ultimately affecting patients’ SEIQoL-DW measures. In order to prevent possible unnoticed interviewer bias special attention should be paid to the interviewer behaviour. Methods to record the meaning of cues should be considered. More research is needed in order to investigate differences in nominating cues with and without the use of the prompt list.

Continuity of care: what matters to women when they are referred from primary to secondary care during labour? a qualitative interview study in the Netherlands.

BackgroundContinuity of care during labour is important for women. Women with an intrapartum referral from primary to secondary care look back more negatively on their birh experience compared to those who are not referred. It is not clear which aspects of care contribute to this negative birth experience. This study aimed to explore in-depth the experiences of women who were referred during labour from primary to secondary care with regard to the different aspects of continuity of care.MethodsA qualitative interview study was conducted in the Netherlands among women who were in primary care at the onset of labour and were referred to secondary care before the baby was born. Through purposive sampling 27 women were selected. Of these, nine women planned their birth at home, two in an alongside midwifery unit and 16 in hospital. Thematic analysis was used.ResultsContinuity of care was a very important issue for women because it contributed to their feeling of safety during labour. Important details were sometimes not handed over between professionals within and between primary and secondary care, in particular about women’s personal preferences. In case of referral of care from primary to secondary care, it was important for women that midwives handed over the care in person and stayed until they felt safe with the hospital team. Personal continuity of care, in which case the midwife stayed until the end of labour, was highly appreciated but not always expected.Fear of transportion during or after labour was a reason for women to choose hospital birth but also to opt for home birth. Choice of place of birth emerged as a fluid concept; most women planned their place of birth during pregnancy and were aware that they would spend some time at home and possibly some time in hospital.ConclusionsIn case of referral from primary to secondary care during labour, midwives should hand over their care in person and preferrably stay with women throughout labour. Planned place of birth should be regarded as a fluid concept rather than a dichotomous choice.

Philosophical perspectives on response shift

PurposeThis paper brings a philosophical perspective to response shift research with the aim of raising new critical questions, clarifying some of the concepts employed, and providing a philosophical context within which to critically examine the assumptions that shape the field.MethodsThis critical analysis aims to reveal assumptions and clarify concepts and/or definitions that undergird methodological practice and theory.ResultsWe bring attention to the distinction of weak and strong evaluations, and the implications and consequences for construct validity and for designing patient-reported outcome measures (PROMs). We then consider the epistemology of PROMs, suggesting that they are better suited to a social constructivist approach than a scientific realist one. Finally, we examine the relationship between disability and response shift, arguing that in at least some cases, response shifts should not be understood as ‘measurement bias’.ConclusionOur analysis reveals various concerns and further questions related to the role that substantive values play in the assessment of QoL. It also draws response shift into a wider arena, with broader issues of interpretation, self-evaluation, the meaning of the ‘good life’, and the status and legitimacy we accord to various scientific methods.

Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study

Background Since its launch in 2003, the Dutch Lung Cancer Information Center’s (DLIC) website has become increasingly popular. The most popular page of the website is the section “Ask the Physician”, where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer. Objective Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC’s interactive page, “Ask the Physician”, rather than consulting with their own specialist. Methods This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website. Results Respondents used the Internet and the DLIC website to look for lung cancer–related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist. Conclusions The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.

‘We eat together; today she buys, tomorrow I will buy the food’: adolescent best friends’ food choices and dietary practices in Soweto, South Africa

OBJECTIVE To explore if and how female adolescents engage in shared eating and joint food choices with best friends within the context of living in urban Soweto, South Africa. DESIGN A qualitative, exploratory, multiple case study was conducted using semi-structured duo interviews of best friend pairs to ascertain their eating patterns, friendship and social interactions around dietary habits. SETTING Participants were recruited from three high schools in the urban township of Soweto, South Africa. SUBJECTS Fifty-eight female adolescents (twenty-nine friend pairs) still in high school (mean age of 18 years) were enrolled. RESULTS Although overweight rates were high, no association between friends was found; neither did friends share dieting behaviours. Both at school and during visits to the shopping mall, foods were commonly shared and money pooled together by friends to make joint purchases. Some friends carefully planned expenditures together. Foods often bought at school were mostly unhealthy. Availability, price and quality were reported to affect choice of foods purchased at school. Preference shaped joint choices within the shopping mall environment. CONCLUSIONS Food sharing practices should be investigated in other settings so as to identify specific behaviours and contexts for targeted and tailored obesity prevention interventions. School-based interventions focusing on price and portion size should be considered. In the Sowetan context, larger portions of healthy food may improve dietary intake of fruit and vegetables where friends are likely to share portions.

Exploration of the content validity and feasibility of the EQ-5D-3L, ICECAP-O and ASCOT in older adults

BackgroundIn economic evaluations of care services for older adults health-related quality of life (QoL) measures such as the EQ-5D are increasingly replaced by the ICECAP-O and ASCOT, which cover a broader scope of QoL than health alone. Little is known about the content validity and feasibility of these measures. The purpose of this study was to explore the content validity and feasibility of the EQ-5D-3L, ICECAP-O and ASCOT in older adults.MethodsTen older adults were purposively sampled using a maximum variation principle. Think-aloud and verbal probing techniques were used to identify response issues encountered during the interpretation of items and the selection of response options. We used constant comparative methods to analyse the data.ResultsTwo types of response issues were identified for various items in all three measures: interpretation issues and positive responses. Issues with the mapping of a response on one of the response options were least often encountered for the EQ-5D-3L items. Older adults considered the items of the ICECAP-O and ASCOT valuable though more abstract than the EQ-5D-3L.ConclusionsResearchers who intend to use the EQ-5D, ICECAP-O or ASCOT in economic evaluations of care services for older adults, should be aware of the response issues that occur during the administration of these measures. Older adults perceived none of the measures as providing a comprehensive picture of their QoL. A preference from older adults for one of the measures depends on the extent to which the items reflect current personal concerns in life.

COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study

BackgroundContent validity is the most important measurement property of a patient-reported outcome measure (PROM) and the most challenging to assess. Our aims were to: (1) develop standards for evaluating the quality of PROM development; (2) update the original COSMIN standards for assessing the quality of content validity studies of PROMs; (3) develop criteria for what constitutes good content validity of PROMs, and (4) develop a rating system for summarizing the evidence on a PROM’s content validity and grading the quality of the evidence in systematic reviews of PROMs.MethodsAn online 4-round Delphi study was performed among 159 experts from 21 countries. Panelists rated the degree to which they (dis)agreed to proposed standards, criteria, and rating issues on 5-point rating scales (‘strongly disagree’ to ‘strongly agree’), and provided arguments for their ratings.ResultsDiscussion focused on sample size requirements, recording and field notes, transcribing cognitive interviews, and data coding. After four rounds, the required 67% consensus was reached on all standards, criteria, and rating issues. After pilot-testing, the steering committee made some final changes. Ten criteria for good content validity were defined regarding item relevance, appropriateness of response options and recall period, comprehensiveness, and comprehensibility of the PROM.DiscussionThe consensus-based COSMIN methodology for content validity is more detailed, standardized, and transparent than earlier published guidelines, including the previous COSMIN standards. This methodology can contribute to the selection and use of high-quality PROMs in research and clinical practice.

A case study of haemoglobinopathy screening in the Netherlands: witnessing the past, lessons for the future

Objectives. In 2007 neonatal screening (NNS) was expanded to include screening for sickle cell disease (SCD) and beta-thalassaemia. Up until that year no formal recommendations for haemoglobinopathy (carrier) screening existed in the Netherlands. Although it has been subject to debate in the past, preconceptional and prenatal haemoglobinopathy carrier screening are not part of routine healthcare in the Netherlands. This study aimed to explore the decision-making process of the past: why was the introduction of a screening programme for haemoglobinopathy considered to be untimely, and did ethnicity play a role given the history in other countries surrounding the introduction of haemoglobinopathy screening? Design. A witness seminar was organised, inviting key figures to discuss the decision-making process concerning haemoglobinopathy screening in the Netherlands, thereby adding new perspectives on past events. The transcript was content-analysed. Results. The subject of haemoglobinopathy screening first appeared in the 1970s. As opposed to a long history of neglect of African-American health in the United States, the heritage of the Second World War influenced the decision-making process in the Netherlands. As a consequence, registration of ethnicity surfaced as an impeding factor. However, overall, official Dutch screening policy was restrained regarding reproductive issues caused by fear of eugenics. In the 1990s haemoglobinopathy screening was found to be ‘not opportune’ due to low prevalence, lack of knowledge and fear of stigmatisation. Currently the registration of ethnicity remains on the political agenda, but still proves to be a sensitive subject. Discussion. Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making.

The Local Implementation of a Chronic Disease Management Model for Childhood Overweight and Obesity

Background: The aim of this study is to determine opportunities and barriers regarding the management of overweight and obese children in daily practice, and to show the value of using focus groups when developing an action plan for childhood overweight management in a local context. Methods: Seven focus groups and four semi-structured interviews were conducted with 29 professionals from nine different care disciplines and 7 parents of overweight and obese children aged 4–19 years. Results: After thorough analysis of the focus groups, issues concerning finding the most appropriate care and realising a long-term weight management in daily practice have become clear. Some examples of these issues are: lack of awareness, reluctance to discuss and refer, mutual cooperation, contradictory advice and expectations of treatment and lack of effective support strategies. Conclusion: Focus groups deliver important information on local issues that are important for the development and implementation of a childhood overweight management action plan. And, besides delivering necessary information, focus groups lead to an increased awareness and willingness to improve childhood overweight management in a local context.