University of Groningen Lungs under a cloud Maters, Gemma

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University of Groningen

Lungs under a cloud

Maters, Gemma

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Publication date: 2019

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Maters, G. (2019). Lungs under a cloud: Psychological aspects of COPD. Rijksuniversiteit Groningen.

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The general aim of this thesis was to explore psychological aspects of COPD. In the final chapter the main findings are discussed and related to recent research. In addition, methodology aspects and clinical implications are discussed. Also, recommendations for future research are provided. Main findings

COPD is a demanding disease and psychological aspects play a part in the disease burden. However, still a lot is unclear about the exact role of these psychological aspects. The research presented in this thesis investigates several potentially burdening psychological aspects and possible ways to deal with them.

Most patients with COPD face psychological or medical comorbidities. Many consequences of psycholical comorbidities have been reported in prior studies, mortality risk being one of those. Since the presumed relationship between comorbidities and mortality has been given little attention in stable patients with COPD, it was investigated in this thesis (Chapter 2). The results show high levels of depressive symptoms and medical comorbidities in the stable patients. However, no association was found between comorbid medical conditions or high depressive symptoms and long-term mortality rates in this population. Only heart failure showed an unadjusted association to mortality, which means there possibly is an association between heart failure and mortality in patients with stable COPD.

Given the character of the disease and the high levels of distress (in terms of anxiety or depressive symptoms), patients with COPD may report a high need for spousal support. However, research into spousal support concerning patients with COPD is scarce, especially with regard to the perceived negative experiences concerning spousal support and its consequences. Therefore, our study presented in this thesis (Chapter 3) handles the relationship between distress on the one hand, and on the other hand patients’ perceptions, partners’ perceptions, as well as discrepancies between patients’ and partners’ perceptions of overprotection or protective buffering. The results show that distress is associated with patients’ perceptions of protective buffering and discrepancies in spouses’ perceptions of overprotection. Greater partner reports of overprotection, as compared with patient reports, were related to more distress in patients. Distress measures are frequently used in COPD research, as well as in clinical practice. One of the often-used questionnaires is the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983). It is a short measure, which gives an indication of levels of anxiety or depression in somatic patients. However, we found out that four different Dutch versions of the HADS are around, and this triggered our interest about the way the HADS is handled cross-culturally in research. In this thesis these cross-cultural issues are described (Chapter 4). We concluded that researchers should be very careful in using translated versions of the HADS, for instance in COPD research, as too many problems exist with the translation and cross-cultural validation of this questionnaire. In addition, readers of published cross-cultural studies should be skeptic regarding the validity of findings generated with the HADS. Also, researchers should better document what was done to ensure the cross-cultural validity of translated versions of the HADS.

The earlier mentioned high levels of distress reported in COPD literature, as well as the demand for distress screening, have induced the investigation of the screening capacities of two relevant questionnaires: the Hopkins Symptom Checklist-25 (HSCL-25) (Derogatis, Lipman, &

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Rickels, 1973) and the Clinical COPD Questionnaire (CCQ) (van der Molen et al., 2003), Mental State subscale. They are frequently used screening measures among patients with COPD. We examined if high distress levels, measured with those two questionnaires, would be related to a perceived need for psychosocial care (Chapter 5). The results showed that distress is frequently reported in patients with COPD. However, although a substantial part of these patients did express a need for psychosocial care (28%), both of the measures did not identify enough patients with a need for psychosocial care to indeed advocate distress screening with those questionnaires. In addition, no relationship was found between a need for psychosocial care and illness variables or medical comorbidities. Patients with a need for psychosocial care were somewhat younger than patients without a need, which may imply that younger patients more strongly feel a need to work on their distress and/or do more often expect that their situation can ameliorate.

It is in the best interest of patients with COPD that their disease burden is decreased, for instance by psychological interventions. However, solid research on the effectiveness of psychological interventions for patients with COPD is scarce. Therefore, we had the intention to execute an intervention study, planned as a RCT. The protocol for this intervention is extensively described in Chapter 7. In short, we designed a cognitive-experiential intervention. The purpose of the intervention was to give patients with COPD more personal control over physical, emotional and social consequences of their disease. However, we experienced serious inclusion and dropout problems while carrying out the intervention study. As a result, we were not able to draw conclusions about the effectiveness of the intervention as such. We puzzled our brains over the reasons for these inclusion and dropout problems and reflected on those problems in this thesis (Chapter 6). We formulated some recommendations for future research on psychological interventions in patients with COPD.

The outcomes of this study within the context of recent COPD literature

Our study on the relationship between comorbidities and mortality in patients with stable COPD suggests a relationship exists between congestive heart failure and mortality in this population. This finding fits within recent developments in COPD research. In the past years, several studies have looked into the co-existence of COPD and heart failure, or other heart diseases, and consequences or medical treatments for patients with both diagnoses (Canepa et al., 2018; Rushton, Satchithananda, Jones, & Kadam, 2015; Testa et al., 2017). However, a study by Plachi et al (Plachi et al., 2018) did not show higher mortality rates in patients diagnosed with both COPD and heart failure, compared to patients with either COPD or heart failure. In this group (n=41) two parameters were associated with higher mortality: the inability to exercise and hospitalization rate. As for the relationship between depressive symptoms and mortality, a recent study shows that a history of falls and dyspnea were related to one-year mortality, in COPD patients diagnosed with a depression (Yohannes et al., 2016). Recently, an integrated approach is called for in cardiopulmonary patients (Roversi, Fabbri, Sin, Hawkins, & Agusti, 2016).

Although the attention for issues in spousal relationships of patients with COPD is increasing, still research conducted on this topic seems to be only a fraction of the total research conducted in patients with COPD. Recent studies show that awareness to the wellbeing of partners is of importance because of the assumed association of distress in patients and partners (Mi et al.,

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2017). Another research study shows that dyadic coping may change over time (Vaske et al., 2015).

Recently, a letter to the editor was published by colleagues in COPD-research (Liccardi et al., 2018), in response to our screening paper (Maters, Pool, Sanderman, Wempe, & Fleer, 2018a). The authors discuss underlying mechanisms of depression and anxiety in asthma and translate those to distress in COPD. In our response to this letter we stated that the mechanisms discussed may turn out to be useful in the explanation of distress, and/ or a need for psychosocial care in patients with COPD (Maters, Pool, Sanderman, Wempe, & Fleer, 2018b). It is however beyond the scope of this thesis to discuss these suggested mechanisms in detail.

Unfortunately, we were not able to present data on the effectiveness of the intervention (Chapter 6), due to inclusion and dropout problems in our intervention study. In recent COPD literature these issues have received attention. For instance, in a qualitative study, fear, loss and a desire for improvement of care were identified as relevant related themes for inclusion. In addition, a review shows that attendance to support programs was influenced by a self-help attitude, positive intervention representations, having received information or advice in favor of the program, not being concerned on physical/practical barriers and past experiences with support programs (Sohanpal, Seale, & Taylor, 2012). Further, self-conscious emotions could act as barriers to psychosocial care (Harrison, Robertson, Goldstein, & Brooks, 2017). Concerning the drop out problems, in support programmes unmet expectations after attending a few sessions, perceived severity of symptoms, perceived physical/practical concerns related to attendance and no encouragement to continue with the programme due to staying alone were identified as being relevant. The recent research in COPD concerning inclusion and dropout issues is important and necessary to be able to find effective psychological interventions for patients with COPD after all.

Methodological considerations

Concerning the research presented in this thesis, several methodological remarks can be made. A strength is that a large sample of patients could be included in our screening study. These patients were willing to participate, according to the high response rate. Another strength is that a novel approach was used in this study: patients were asked for their psychosocial care needs, which had not been done before. Furthermore, a strength is the way social support was investigated, in a dyadic way and with a focus on negative effects of spousal support. This type of research is still scarce in COPD research. Besides, concerning our intervention protocol, partners were explicitly invited to participate in one or more sessions, which focused not only on illness-related cognitions, but also on emotions and illness-illness-related emotion-regulation, according to principles of Emotion Focused Therapy (Elliott, Watson, Goldman, & Greenberg, 2004).

A limitation is the usage of the HADS in the mortality paper (Chapter 2). We were not yet aware of the cross-cultural problems with this questionnaire at the time we planned the study. However, when we later on found out that there were four different Dutch versions of the HADS, which in their different translations showed the cultural sensitivity of the scale, we worked on this issue in our separate study concerning the HADS (Chapter 4). Another limitation is the usage of a single question to investigate need for psychosocial care in the screening study. An interview,

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or several questions, would have given more information and could have assured that patients perceived the question univocal.

Clinical implications of the findings

The results presented in this thesis stress the importance of sufficient attention to psychological and social issues in clinical practice, especially where it concerns chronic, serious illness with a heavy illness burden, such as in COPD. To start with, our finding that distress is related to perceptions of partner support implies that patients and partners perceptions with regard to support provided need to be investigated by health care providers. The impression is that pulmonary physicians’ checkups are time limited and therefore they usually focus on medical issues. However, when the neglect of comorbid psychological and social issues results in a higher disease burden and deterioration of functioning, it seems ‘a shot into an open goal’ to attain a more holistic approach for this patient population. But as we know, it is a tough process to turn the medical model into a more biopsychosocial model (Kaptein et al., 2009). Therefore, in the Dutch Health Care system, addressing the aforementioned better fits within the tasks of the specialized lung nurses in hospitals, or general practitioner nurses in primary care. Patients with COPD, who are involved in a spousal relationship, can be referred to a social worker by their physicians for investigation of relationship issues and counseling. If more pervasive relational problems exist, the social worker should refer to a health care provider specialized in relational therapy.

Two studies in this thesis showed that there is no straightforward relation between distress-levels and the psychosocial care needs in patients with COPD (Chapters 5 and 6). As a result, clinicians cannot rely on distress questionnaires to know if needs for psychosocial care exist in their patients. In addition, patients with COPD experience barriers with regard to expressing their need for psychosocial care. In the communication with COPD patients extra difficulties may exist because of the physical symptoms of COPD, such as coughing by patients, or the experience of increasing dyspnea when talking and/or when emotions come up. Patients may therefore avoid talking about psychological issues. Health care providers should be aware of these barriers and address them. Ideally, physicians understand the potential influence of psychological issues on the disease and patients’ health behavior. In addition, they ideally have the skills to gain insight into the patients’ needs and doubts (Kaptein, Fischer, & Scharloo, 2014). But, as mentioned before, physicians have to deal with time-constraints in their clinical work, and this may keep them from discussing psychosocial care needs and/or implications with their patients. However, when psychosocial care needs are not addressed by physicians, this implies patients either do not get the care they need, or look for it elsewhere.

In my clinical work, as a health care psychologist in a hospital, it occurs to me that the department of Medical Psychology receives relatively little referrals concerning patients with COPD, in comparison to patients with other diseases (e.g. cancer or cardiac conditions). New initiatives in health care, such as Value Based Health Care (Porter, 2010) hopefully increase the awareness of psychosocial care needs in COPD. I encourage psychologists and social workers to actively contact pulmonary physicians and primary care physicians, about the added value of psychosocial referrals with regard to COPD care. In a recent study by Ratcliff et al (Ratcliff et

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al., 2017) it is even suggested that medical providers should receive ‘sustained and personalized support’, to increase their recognition of mental health issues or treatment numbers, based on their research in veterans with CHF and/ or COPD, as well as the work of others (Sinnema et al., 2015).

Unfortunately, we have the impression that different Dutch versions of the HADS are still being administered, in hospital settings or in primary care, since our paper was published in 2013 (Chapter 4) and cited 25 times (according to PubMed, accessed in November 2018). It may be that health care providers assume that the HADS has proven its worthiness and quality, and is used without criticism and obtained via unofficial ways. This illustrates the gap between science and clinical care, which may lead to ‘false’ conclusions concerning patient’s anxiety- and/or depression-scores.

Recommendations for future research

Based on the findings of our studies, presented in this thesis, we recommend more research on psychosocial care needs in patients with COPD, as well as on dyadic coping of patients and their partners. In addition, we recommend a shift in COPD research from investigating a relationship between distress/ depression levels and mortality rates to pathways or mediators/ moderators of this assumed association. Literature shows there is no straightforward relationship between comorbidities or depressive symptoms at the one hand and mortality at the other hand, and a possible relationship is more complicated than assumed before. From a clinical perspective, it is relevant to understand why (some) patients with COPD and psychological symptoms run the risk of dying earlier than others. Up until now, this has been given little attention in COPD research.

A question for the future remains what an effective psychological treatment for patients with COPD would look like. In such future research much effort has to be paid to guard the rationale and feasibility of a planned intervention. In fact, these issues need separate research: what do patients really want and need, what adds to their motivation to spend energy in professional, psychological treatment?

Concluding remarks

With the studies collected in this thesis we shed some light on several issues concerning the physical and psychological impact of COPD, a chronic and life-threatening illness with many daily symptoms and constrains. Thanks to our difficulty to perform the originally planned intervention study, we learned a lot about the complexity that is inherent in suffering from COPD at the one hand, and how to plan and perform adequate research on adequate help at the other hand. Still, a lot needs to be understood better and we hope that our studies are of help for future research on the psychology of COPD. At least, this thesis has made us again aware that COPD should be treated not only as a medical illness, but most and for all as a biopsychosocial disease.

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References

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Elliott, R., Watson, J. C., Goldman, R. N., & Greenberg, L. S. (2004). Learning emotion-focused therapy: The process-experiential approach to change. American Psychological Association, Washington.

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Liccardi, G., Calzetta, L., Milanesed, M., Salzillo, A., Manzi, F., Ferrari, M., & Rogliani, P. (2018). Psychological stress, lung function and exacerbation risk in COPD: Is an increase of cholinergic tone a possible link? COPD: Journal of Chronic Obstructive Pulmonary Disease, DOI: 10.1080/15412555.2018.1459533.

Maters, G. A., Pool, G., Sanderman, R., Wempe, J. B., & Fleer, J. (2018a). Identifying patients with COPD in need for psychosocial care through screening with the HSCL-25 and the CCQ mental state. COPD: Journal of Chronic Obstructive Pulmonary Disease, 15(1), 60-64.

Maters, G. A., Pool, G., Sanderman, R., Wempe, J. B., & Fleer, J. (2018b). Response to the letter of Liccardi et al. COPD: Journal of Chronic Obstructive Pulmonary Disease, 1-1. doi:10.1080/15412555.2018.1485638. Mi, E., Mi, E., Ewing, G., Mahadeva, R., Gardener, A. C., Holt Butcher, H., Farquhar, M. (2017). Associations

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Vaske, I., Thone, M. F., Kuhl, K., Keil, D. C., Schurmann, W., Rief, W., & Stenzel, N. M. (2015). For better or for worse: A longitudinal study on dyadic coping and quality of life among couples with a partner suffering from COPD. Journal of Behavioral Medicine, 38(6), 851-862. doi:10.1007/s10865-015-9657-y.

Yohannes, A. M., Mullerova, H., Hanania, N. A., Lavoie, K., Tal-Singer, R., Vestbo, J., Wouters, E. F. (2016). Long-term course of depression trajectories in patients with COPD: A 3-year follow-up analysis of the evaluation of COPD longitudinally to identify predictive surrogate endpoints cohort. Chest, 149(4), 916-926. doi:10.1016/j.chest.2015.10.081.

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COPD (Chronic obstructive pulmonary disease) is a highly prevalent progressive lung disease, characterized by a chronic obstruction of lung airflow. Symptoms are, for example, dyspnea (breathlessness) and frequent coughing. The disease implies a considerable burden for patients. They may become impaired in daily life and social activities and may suffer from exacerbations (episodes of increased symptoms). COPD may induce strong emotions in patients; anxiety and/ or depressive symptoms are frequently reported. Although COPD is a medical condition, it has to be considered a disease with bio-psycho-social aspects. However, we do not know much yet with respect to the psychological and social aspects of this illness. Therefore, in this thesis we explore several psychological aspects of COPD. In particular, we discuss respectively: a) the relationship between COPD, comorbidities and mortality (Chapter 2), b) the relationship between psychological distress and perceptions of spousal support (Chapter 3), c) the cross-cultural use of the Hospital Anxiety and Depression Scale (HADS), a frequently used screening instrument in COPD research (Chapter 4), d) the outcomes and adequacy of a screening-procedure concerning need for psychosocial care (Chapter 5), and a study concerning problems with the implementation of a psychological intervention study (Chapter 6). The psychological intervention protocol we designed to encounter several central issues in coping with COPD, is described in detail in Chapter 7.

Below, we describe the contents of these chapters in brief. To start with, in Chapter 2 we present the results of our study concerning the association of COPD and comorbidities with mortality, in patients with stable COPD. In total, 224 patients were included in this study; mean age 61.2 (±10.00), 48.2% female, median follow up 4.2 years. In this sample, 70% of the patients had a comorbid medical condition according to the Charlson Comorbidity Index (CCI) or high depressive symptoms as assessed with the Hospital Anxiety and Depression Scale (HADS) and Symptom Checklist-90 (SCL-90). During follow-up, 51% of all patients died and patients with heart failure showed the highest mortality rate (75%). The Cox proportional hazard model showed that the presence of comorbidities or high depressive symptoms were not related to survival, but age, fat-free mass and exercise capacity were. An unadjusted association between heart failure and survival was found. Our finding that the presence of comorbidities or high depressive symptoms were not related to mortality is in line with the work of some researches and contradicts with the work of others. We conclude that the value of the CCI is questionable when used in relatively small groups and therefore should be handled carefully. In addition, our finding that there is an unadjusted association between heart failure and survival, in our sample, points at awareness of adequate diagnosis and treatment of comorbid heart failure in COPD.

Research into partner support of patients with COPD is still scarce; in chapter 3 we present our study on partner support and its association with distress. The aims of this study were (1) to investigate if discrepancies between patients’ and partners’ perceptions of overprotection and

protective buffering are associated with distress and (2) to evaluate if the direction of the differences

between patients’ and partners’ perceptions is associated with distress. We were able to use the data of 68 couples; mean age of patients 64 (± 9.5), mean age of partners 62 (± 9.7), 43% female patients, 88% were married, the duration of the relationship was 34.2 years on average (± 14.2). Distress was assessed using the Hopkins Symptom Checklist-25 (HSCL-25), patients’ and partners’

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perceptions of (un-)supportive partner behavior were assessed with a questionnaire measuring overprotection and protective buffering. To test the hypotheses, correlations were inspected and multiple regression analyses was performed. We found an independent association between distress levels at the one hand and patients’ perceptions of protective buffering at the other hand. This association may suggest that patients report higher levels of distress when they perceive that their partner hides concerns and acts as if there is ‘nothing the matter’ or that distressed patients elicit more protective buffering behavior from their partners. We also found that patients’ distress was associated with discrepancies between patients’ and spouses’ perceptions of overprotection. Greater partner reports of overprotection (as compared to patient reports) were related to more distress in patients; this was contrary to what we had expected. As we were the first to pay attention to such associations, the results need to be replicated. Also, future studies may shed light on the mechanisms involved.

Chapter 4 presents our results on a study concerning the cross-cultural use of the Hospital Anxiety and Depression Scale (HADS). This study was performed because, at the start of our project concerning psychosocial issues related to COPD, we intended to apply this widely used questionnaire in our research on the effectiveness of a psychological intervention. However, we found out there where four different Dutch translations of the HADS and also that problems were reported in HADS literature. Therefore, we decided not to use this questionnaire in our intervention study and to look into the cross-cultural use of the HADS instead. The aim of this study was to examine if the problems of the HADS, as reported in literature, could be related to translation-issues and the cross-cultural use of the HADS and, therefore, to its construction. We identified authors’ awareness of difficulties translating the HADS by examining 20% of studies using the HADS, obtained by a systematic literature search. We found that only 45% of the 417 papers from non-English speaking countries, indicated the usage of a translated version of the HADS. In 54% of the studies validated translations were cited. Seventeen reviews were examined and only seven mentioned issues of language and culture. We concluded that the contents and response options of the HADS make it difficult to translate. So, in our opinion, the issues reported in HADS literature could indeed be created (in part) by translation and cross-cultural problems. However, researchers tend to overlook these issues and most researches did not explicitly report on the way the translated version was acquired and how validation was ensured in our study. We advise to be wary of the validity of findings obtained with translated versions of the HADS. Also, we advise researchers to better document in their reports what was done to ensure the cross- cultural validity of translated versions.

In the COPD literature screening for distress is advocated, in order to identify patients in need for psychosocial care. However, whether an association exists between distress and a need for psychosocial care was not yet investigated. Therefore, in Chapter 5 we look into this relationship and present the results of our study on the identification of patients with a need for psychosocial care through screening with the HSCL-25 and the Clinical COPD questionnaire. We examined the screening capacities of the HSCL-25 and the Mental State subscale of the CCQ, as well as several characteristics of patients with a need. Outpatients were assessed with the HSCL-25, CCQ and a question on their need for psychosocial care. We used a Chi-square to compare the percentage of patients with a need and HSCL-25 ≥39 with the percentage of patients with a

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need and CCQ Mental State>2 .The sample existed of 323 patients; 57% of them scored high on the HSCL-25 (≥39) and 20% on the CCQ Mental State (>2), 28% reported a need for psychosocial care. The HSCL-25 identified a higher percentage of patients with a need for psychosocial care than the CCQ Mental State (χ2_{=9.41, p<.002), which was in line with our expectations. Patients}

with a need for psychosocial care were somewhat younger than patients without a need (t=4.48, p<001), but no differences existed for sex, FEV1, FEV1%predicted or medical comorbidities. We concluded that distress screening is questionable as a method to identify COPD patients who endorse a need for psychosocial care. Although the HSCL-25 identified more patients in need than the CCQ Mental State scale, not all patients with a need for psychosocial care were identified by either of these instruments. Therefore, the relationship between distress scores and a need for psychosocial care should not be taken for granted. More research is needed to investigate if mediators or moderators play a part between distress outcomes and need for psychosocial care. Also, alternative methods to identify patients in need for psychosocial care need to be evaluated. In chapter 6 we discuss the issues we came across in our psychological intervention study. Although we paid extra attention to approaching and motivating patients, we still experienced serious issues concerning inclusion and dropout. Over 400 hospitalized and outpatients of the University Medical Center Groningen and the Martini Hospital Groningen (The Netherlands) were approached by a research assistant to participate. Of these, only 46 patients (57% of the interested patients) could be randomized to the intervention condition (n= 25) or control condition (n=21); this number was far below the number needed (n=160) to examine the statistical effectiveness of the intervention. At the end, only 32% (n= 8 of n=25) received the intervention as planned and 29% (n=6 of n=21) dropped out in the control condition. So, the dropout rate for both conditions combined was 50%. As a consequence, we were not able to report on the effectiveness of this psychological intervention. Therefore, we reflected on the issues and formulated recommendations for future psychological intervention studies in general, and for COPD in particular. Generally, we conclude that including patients for psychological intervention studies is more complex than we had expected. In hindsight, we acknowledge that we should have addressed beforehand the level of knowledge and insight of patients concerning their illness, their perceptions on physical and practical barriers, their cognitions concerning psychosocial care and COPD care in general, their types of illness-denial and barriers to discuss psychological issues, as well as self-conscious emotions. Concerning the high dropout rate in our intervention study we conclude that we should have checked, before the start of the intervention, more explicitly with the eligible patients if the goals of the intervention were really clear to them, as well as consistent with their needs. We suggest that in future intervention studies prior patient participation is of utmost relevance to prevent later problems concerning inclusion and/or dropout.

In chapter 7 we present our cognitive-experiential intervention. We describe the rationale for the intervention, as well as the manual, to be used by psychologists. The cognitive- experiential intervention is targeted at learning patients to get more control over: a) the physical consequence/ symptoms of the disease, b) emotions or perceptions regarding the disease and c) the consequences of the disease regarding relationships. Cognitive and process-experiential techniques are suggested and described to realize these goals.

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The main findings presented in this thesis are discussed in Chapter 8 and related to recent research. Also, methodological considerations, clinical implications and recommendations for future research are discussed. To conclude, this thesis sheds some light on several issues concerning the physical and psychological impact of COPD. However, a lot of work needs to be done still and hopefully this thesis is helpful for future research concerning the psychology of COPD. The research presented in this thesis emphasizes that COPD should be treated as a bio- psycho-social illness.

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COPD is een veelvoorkomende progressieve longziekte, met symptomen als dyspneu (kortademigheid/ benauwdheid) en hoesten. De ziekte brengt een flinke ziektelast met zich mee, patiënten kunnen beperkt raken in hun dagelijks leven of sociale activiteiten en lijden aan longaanvallen (periodes met ernstiger symptomen). COPD kan sterke emoties oproepen bij patiënten en angst of depressieve symptomen worden veelvuldig gerapporteerd. Hoewel COPD wordt beschouwd als een ziekte met bio-psycho-sociale aspecten, is er nog steeds veel onbekend over de psychologische en sociale aspecten. In dit proefschrift wordt een aantal psychologische aspecten nader in kaart gebracht. In het bijzonder, bespreken we respectievelijk: a) de samenhang tussen co-morbiditeit en overlijden (hoofdstuk 2), b) de samenhang tussen stress en ervaren partner steun (hoofdstuk 3), c) het gebruik van vertaalde versies van de Hospital Anxiety and Depression Scale (HADS; een vragenlijst die regelmatig wordt gebruikt in COPD onderzoek) in wetenschappelijke studies (hoofdstuk 4), d) de screening van een behoefte aan psychosociale zorg (hoofdstuk 5) en e) de problemen die wij hebben ervaren bij het uitvoeren van een onderzoek naar een psychologische behandeling (hoofdstuk 6). Verder bespreken we in hoofdstuk 7 getailleerd een protocol van een psychologische interventie.

In deze samenvatting beschrijven we in het kort de inhoud van de verschillende hoofdstukken. Ten eerste presenteren we in hoofdstuk 2 de resultaten van onze studie naar de samenhang tussen co-morbiditeit en overlijden, in patiënten met stabiele COPD. In totaal hebben 224 patiënten deelgenomen aan deze studie; gemiddelde leeftijd 61.2 (±10.00), 48.2% vrouw, mediane follow up tijd 4.2 jaar. Van deze patiënten had 70% een co-morbide medische aandoening volgens de Charlson Comorbidity Index (CCI) of veel depressieve symptomen, gemeten met de Hospital Anxiety and Depression Scale (HADS) en de Symptom Checklist-90 (SCL-90). Tijdens de follow-up stierf 51% van de patiënten, waarbij het sterftecijfer het hoogst was bij mensen met co-morbide hartfalen (75%). Het ‘Cox proportional hazard model’ liet zien dat de aanwezigheid van co-morbiditeit of veel depressieve symptomen niet gerelateerd waren aan overlijden. Leeftijd, vetvrije massa en het uithoudingsvermogen waren voorspellend voor overlijden. Een niet gecorrigeerde samenhang werd gevonden tussen hartfalen en overlijden. Onze bevinding dat de aanwezigheid van een co-morbide aandoening of depressieve symptomen niet samenhangt met overlijden komt overeen met de bevindingen van sommige onderzoekers, maar is in tegenspraak met de bevindingen van andere onderzoekers. We concluderen dat de waarde van de CCI ter discussie staat bij relatief kleine aantallen proefpersonen en dat er zorgvuldig mee moet worden omgegaan. Verder, onze bevinding dat er een ongecorrigeerde samenhang is tussen hartfalen en overlijden, geeft aan dat er alertheid op zijn plaats is met betrekking tot een adequate diagnose en behandeling van hartfalen bij mensen met COPD.

Er is nog weinig onderzoek gedaan naar partnersteun bij mensen met COPD. In hoofdstuk 3 bespreken we onze studie naar de relatie tussen partnersteun en stress. Doelen van dit onderzoek waren: (1) te onderzoeken of discrepanties tussen patiënten en hun partners ten aanzien van

overbescherming en beschermend bufferen gerelateerd zijn aan stress en (2) na te gaan of de

richting van de verschillen in percepties tussen patiënten en hun partners gerelateerd is aan stress. In totaal namen 68 koppels deel aan het onderzoek. De gemiddelde leeftijd van patiënten was 64 (± 9.5) en van hun partners 62 (± 9.7), 43% van de patiënten was vrouw, 88% was

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getrouwd en de gemiddelde duur van een relatie was 34.2 jaar (±14.2). De mate van stress werd bepaald aan de hand van de Hopkins Symptom Checklist-25 (HSCL-25) en voor het in kaart brengen van de percepties van patiënten en partners met betrekking tot partnersteun werd een vragenlijst gebruikt voor overbescherming en beschermend bufferen. Om de hypothesen te toetsen werden correlaties bekeken en meervoudige regressie analyses uitgevoerd. We vonden een onafhankelijke samenhang tussen stress en de percepties van de patiënt ten aanzien van behoedend gedrag (beschermend bufferen). Dit suggereert dat patiënten die het idee hebben dat hun partner zorgen voor hen verbergt en net doet of er niets aan de hand is meer stress rapporteren, of dat patiënten die meer stress ervaren meer behoedend gedrag oproepen bij hun partners. We vonden ook dat de mate van stress bij patiënten was gerelateerd aan discrepanties in de percepties van de beide partners ten aanzien van overbescherming. Wanneer partners benoemen meer overbeschermend gedrag te vertonen (vergeleken met de patiënten) dan bleek dit gerelateerd te zijn aan meer stress bij patiënten, in tegenstelling tot wat wij hadden verwacht. Deze bevinding dient gerepliceerd te worden, aangezien we de eersten waren die dit verband vonden. Verder kunnen de onderliggende mechanismen in kaart worden gebracht in toekomstig onderzoek.

Hoofdstuk 4 bespreekt de uitkomsten van onze studie naar het interculturele gebruik van de Hospital Anxiety and Depression Scale (HADS). In eerste instantie waren we van plan deze bekende vragenlijst te gebruiken in ons onderzoek naar een psychologische behandeling. Echter, toen bleek dat er vier verschillende Nederlandse versies circuleerden van deze lijst. Tevens vonden we in de literatuur dat er melding werd gemaakt van diverse problemen met de HADS. Daarop besloten we om de vragenlijst niet te gebruiken in ons onderzoek naar een psychologische behandeling. In plaats daarvan zijn we gaan onderzoeken hoe er door onderzoekers wordt omgegaan met het gebruik van vertaalde versies van de HADS. Het doel van ons onderzoek was om in kaart te brengen of er in de literatuur problemen worden gerapporteerd die gerelateerd zouden kunnen zijn aan de vertaling en het interculturele gebruik van de HADS. We onderzochten de oplettendheid van onderzoekers met betrekking tot moeilijkheden in de vertaling van de HADS door 20% van de artikelen te bekijken van studies waarbij een vertaling van de HADS was gebruikt, na een literatuur onderzoek. We vonden dat er in slechts 45% van de 417 artikelen uit niet Engelssprekende landen melding werd gemaakt van het gebruik van een vertaalde versie van de HADS. In 54% van de artikelen werd verwezen naar gevalideerde vertalingen. Zeventien reviews werden gedetailleerd bekeken en daarvan meldde slechts zeven dat er problemen waren met taal of cultuur. We concludeerden dat de inhoud en antwoordmogelijkheden van de HADS het een moeilijke vragenlijst maken om te vertalen. De gerapporteerde problemen in de HADS literatuur kunnen inderdaad (deels) worden veroorzaakt door het gebruik van vertalingen en interculturele problemen. Onderzoekers zijn geneigd dit over het hoofd te zien en de meeste van auteurs van artikelen rapporteren niet expliciet over de manier waarop een vertaling werd verkregen en of er zorg voor was gedragen dat een vertaling was gevalideerd. We suggereren scepticisme ten aanzien van de validiteit van bevindingen die zijn verkregen met vertaalde versies van de HADS. Verder adviseren we onderzoekers om zorgvuldiger te zijn in het rapporteren over wat zij hebben gedaan om de interculturele validiteit van vertaalde versies van de HADS te waarborgen.

In de COPD literatuur wordt screening naar de aanwezigheid van stress aangeraden, als een

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manier om patiënten te identificeren die psychosociale zorg nodig hebben. Maar, of er een samenhang is tussen stress en een behoefte aan psychosociale zorg werd nog niet in kaart gebracht. Wij hebben hier onderzoek naar gedaan en presenteren de resultaten van dit onderzoek naar het identificeren van patiënten met een psychosociale hulpbehoefte doormiddel van screening met de HSCL-25 en de Clinical COPD questionnaire (CCQ) in hoofdstuk 5. We onderzochten de screening capaciteiten van de HSCL-25 en de subschaal Mentale Toestand van de CCQ en een aantal karakteristieken van patiënten met een hulpbehoefte. Patiënten van een polikliniek werd gevraagd de HSCL-25, CCQ en een vraag over hun hulpbehoefte in te vullen. We gebruikten een Chi-kwadraat om het percentage van patiënten met een hulpbehoefte en HSCL-25≥39 te vergelijken met het percentage van patiënten met een hulpbehoefte en CCQ Mentale Toestand >2. Onze groep proefpersonen bestond uit 323 patiënten; 57% van hen scoorde hoog op de HSCL-25 (≥39) en 20% op de CCQ Mentale Toestand (>2); 28% rapporteerde een psychosociale hulpbehoefte. De HSCL-25 identificeerde meer patiënten met een hulpbehoefte dan de CCQ Mentale Toestand (χ2_{=9.41, p<.002), wat in lijn was met onze verwachtingen. Patiënten met}

een hulpbehoefte waren iets jonger dan patiënten zonder een hulpbehoefte (t=4.48, p<001). Er werden geen verschillen gevonden voor sekse, FEV1, FEV1%voorspeld of medische co-morbiditeiten. We concludeerden dat er vraagtekens moeten worden gezet bij stress-screening als methode om patiënten te identificeren die een psychosociale hulpbehoefte hebben. Hoewel de HSCL-25 meer patiënten identificeerde dan de CCQ Mentale Toestand subschaal, werden niet alle patiënten geïdentificeerd. Een verband tussen stress en een behoefte aan psychosociale hulp moet zeker niet als een vaststaand gegeven worden beschouwd. Er is meer onderzoek nodig om in kaart te brengen of mediatoren of moderatoren een rol spelen bij stress in relatie tot een hulpbehoefte. Verder dienen alternatieve methoden te worden onderzocht waarmee patiënten kunnen worden geïdentificeerd die een hulpbehoefte hebben.

In hoofdstuk 6 staan we stil bij de problemen die we tegenkwamen in ons onderzoek naar een psychologische behandeling. Hoewel we veel aandacht hebben besteed aan het benaderen en motiveren van patiënten, ondervonden we serieuze problemen met betrekking tot inclusie en uitval. Meer dan 400 klinische en poliklinische patiënten van het Universitair Medisch Centrum Groningen en het Martini Ziekenhuis Groningen werden benaderd door een onderzoeksassistent. Slechts 46 patiënten (57% van de geïnteresseerden) werden gerandomiseerd en toegewezen aan de behandelconditie (n= 25) of de controle conditie (n=21). Dit aantal was fors lager dan het aantal dat we nodig hadden (n=160) om de effectiviteit van de behandeling te onderzoeken. Slechts 32% (n= 8) werd uiteindelijk volgens protocol behandeld en 29% (n=6) viel uit bij de controle conditie. Het totale percentage van uitvallers was 50%. Het was niet mogelijk om te rapporteren over de effectiviteit van de behandeling en daarom reflecteren we in hoofdstuk 6 op de problemen en geven aanbevelingen voor toekomstig onderzoek naar psychologische behandelingen. We concluderen dat het includeren van patiënten bij psychologische behandelstudies nog moeilijker is dan we dachten. Bij nader inzien hadden we op voorhand de kennis en inzichten van patiënten met betrekking tot hun ziekte, hun percepties ten aanzien van fysieke en praktische barrières en cognities over psychosociale zorg, eventuele ziektevermijding, obstakels bij het bespreken van psychologische problemen en zelfbewuste emoties in kaart moeten brengen. Met betrekking tot de uitval concluderen we dat we expliciet hadden moeten

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nagaan, voorafgaand aan de start van de behandeling, of de doelen van de behandeling duidelijk voor hen waren en in overeenstemming met hun behoeften. We suggereren dat in toekomstig onderzoek patiënten participatie wordt overwogen als een manier om bepaalde problemen te ondervangen.

In hoofdstuk 7 presenteren we ons protocol van een cognitief-experiëntiële behandeling. We beschrijven de rationale van de behandeling en een handleiding voor psychologen. De behandeling heeft tot doel om patiënten te leren meer controle te krijgen over; a) de fysieke consequenties/symptomen van de ziekte, b) emoties en percepties met betrekking tot de ziekte en c) de consequenties met betrekking tot relaties. Cognitieve en proces-experiëntiële technieken zijn gekozen om deze doelen te realiseren.

De belangrijkste bevindingen van dit proefschrift worden gepresenteerd en bediscussieerd in hoofdstuk 8 en gerelateerd aan recent onderzoek. Verder worden methodologische overwegingen, klinische implicaties en aanbevelingen voor toekomstig onderzoek besproken. Concluderend werpt dit proefschrift enig licht op bepaalde aspecten van de fysieke en psychologische impact van COPD. Echter, er moet nog veel werk verzet worden en hopelijk draagt dit proefschrift bij aan toekomstig onderzoek naar de psychologie van COPD. Het onderzoek dat wordt besproken in dit proefschrift benadrukt eens te meer dat COPD moet worden behandeld als een bio-psycho-sociale ziekte.

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Processed on: 22-1-2019 PDF page: 155PDF page: 155PDF page: 155PDF page: 155 155 About the author

Gemma Maters (1980) received her Master’s degree in Clinical Psychology at the University of Groningen in 2004. Subsequently she worked for several years as a psychologist in primary care and started with the PhD project in 2007, at the department of Health Psychology, University Medical Center Groningen, The Netherlands. She combined working on this thesis with a postdoctoral training and received her registration as a Healthcare Psychologist (Gezondheidszorgpsycholoog) in 2012. In 2013 she started working as a healthcare psychologist in a rehabilitation center. After the birth of her youngest child, in 2014, she continued to work on this thesis. She is currently working as a medical psychologist at the department of Medical Psychology of the Isala Hospital and as a lecturer at the Specialty Training for General Practice of the University Medical Center Groningen.

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Processed on: 22-1-2019 PDF page: 157PDF page: 157PDF page: 157PDF page: 157 157 Dankwoord

Het was een lange en leerzame reis. Het begon allemaal bij mijn schoonmoeder. Ze heeft jarenlang geworsteld met de ziekte COPD, voordat ze overleed in 2006. Haar strijd was één van de redenen om in 2007 te solliciteren naar de functie van promovendus binnen het UMCG. Ik wilde iets bijdragen aan het welzijn van mensen met COPD.

Tijdens mijn reis ben ik veel mensen tegengekomen die ik dank verschuldigd ben. Allereerst de patiënten die mee hebben gedaan aan het onderzoek. Dank voor jullie openheid. Daarnaast wil ik mijn begeleiders en medeauteurs bedanken. Prof. dr Robbert Sanderman, je aanhoudend optimisme en de manier waarop je alles in een breder perspectief plaatst zijn inspirerend. Dr. Johan Wempe, ik bewonder je grote betrokkenheid bij je patiënten en je energie. Dr. Grieteke Pool, dank voor je kritische blik; door jou ben ik nog meer gaan beseffen dat iedere therapeutische interventie weloverwogen dient plaats te vinden. Dr. Joke Fleer, je pragmatische insteek is relativerend, dank daarvoor. Professor Jim Coyne, thank you for the opportunity to work together, visit you in Philadelphia and learn a lot from you. Dr. Aimee Yuka Kim, PhD, thank you for your contribution to the “HADS paper” and for taking me all around wonderful Philadelphia. Dr. Niels de Voogd, dank voor je goede ideeën en steunende woorden. Prof. dr Mariët Hagedoorn, dank voor de fijne samenwerking en je zorgvuldigheid. Dr. Evelien Snippe, dank voor je gedegen onderzoek en enthousiasme.

Ook wil ik Titia Klemmeijer-Boekhout bedanken; fijn dat je me wegwijs wilde maken in het Martini Ziekenhuis Groningen en de screening van patiënten met COPD hebt begeleid. Dank aan alle psychologen die hebben meegedacht bij het schrijven van het behandelprotocol, of die de behandelingen hebben uitgevoerd: Wendelien Bohmers, Manon Wolters, Bertus Faber, Corinne van Scheppingen, Carina Koops, Torben Schulz, Kim van der Schoot, Floor Paulissen en Verona Otten. Ook heb ik ten tijde van het onderzoek een aantal studenten begeleid bij het schrijven van hun these, waarbij zij een bijdrage leverden aan de totstandkoming van dit proefschrift. Bedankt daarvoor: Evelien Snippe, Maaike Verburg, Kars van de Broek, Francien Kemper, Kirsten de Kok, Alieke Hulsink, Suzanne Hendriks, Nicole Mayer, Mirjam Lammers, Marga Tjallingii en Marijke Schaap-Oostingh. Ook heeft een aantal student-assistenten en aios geholpen met dataverzameling en dataverwerking ten behoeve van dit onderzoek. Bedankt Bernadetto Romano, Marleen Beelen, Vanessa Riethmeister en Kris Wijma.

Verder dank aan alle oud-collega’s van de afdeling Health Psychology, voor de hulp en gezelligheid. In het bijzonder bedank ik Ans Smink, Truus van Ittersum, Annemieke Brouwers, Eric van Sonderen, Renate Kroese, Maya Schroevers, Adelita Ranchor en Corinne van Scheppingen. Mijn huidige collega’s van de afdeling Medische Psychologie van Isala, locaties Zwolle en Meppel, bedank ik voor de mogelijkheid onbetaald verlof op te nemen, zodat ik de kans kreeg dit proefschrift af te ronden. Voor de mooie vormgeving van dit proefschrift bedank ik Bianca Pijl. Tot slot, lieve familie en vrienden, heel erg bedankt voor de opbeurende woorden en het aanhoren van mijn frustraties. Paranimfen, Sandra en Charlotte, wat fijn dat jullie mijn steun en toeverlaat willen zijn bij de promotie. Lieve Marcel, zonder jou was dit proefschrift er niet geweest. Dank voor de ruimte die ik van je kreeg om er aan te werken; je hebt me altijd gesteund. Lieve dochters, Roosmarijn en Veerle, wat kijk ik er naar uit meer tijd te hebben om leuke dingen met jullie te ondernemen, nu dit proefschrift eindelijk af is.

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Processed on: 22-1-2019 PDF page: 159PDF page: 159PDF page: 159PDF page: 159 159 SHARE- previous dissertations

This thesis is published within the Research Institute SHARE (Science in Healthy Ageing and healthcaRE) of the University Medical Center Groningen / University of Groningen. Further information regarding the institute and its research can be obtained from our internet site: http://www.share.umcg.nl/

More recent theses can be found in the list below. ((co-) supervisors are between brackets) 2018

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Dorland-Pel HF

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Looijmans A

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Schulz T

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Badura P

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