The work described in this thesis had two objectives, specifically focusing on people aged 70 years and older: first, we aimed to investigate the associations between several thrombosis-related... Show moreThe work described in this thesis had two objectives, specifically focusing on people aged 70 years and older: first, we aimed to investigate the associations between several thrombosis-related risk factors described in young and middle-aged populations and the risk of venous thrombosis (VT) in the elderly; second, we aimed to provide insight into several long-term consequences (i.e., health-related quality of life (HRQoL) and long-term risk of mortality) after a first VT at old age. Show less
Dit proefschrift is gericht op het onderzoeken van verschillende aspecten van de huidige revalidatie rondomgehoorverlies. In de verschillende hoofdstukken wordt ingegaan op de selectiecriteria voor... Show moreDit proefschrift is gericht op het onderzoeken van verschillende aspecten van de huidige revalidatie rondomgehoorverlies. In de verschillende hoofdstukken wordt ingegaan op de selectiecriteria voor volwassen CI-kandidaten (hoofdstuk 2 en 3), de taalontwikkeling bij kinderen met een ABI (hoofdstuk 4), enverschillende ontwikkelingsuitkomsten na revalidatie voor kinderen met gehoorverlies, zoals het sociaalemotioneel functioneren (hoofdstuk 5) en het opleidingsniveau (hoofdstuk 6). Show less
Being confronted with cancer is a life-changing event, with major impact to well-being, quality of life and relationships. Cancer treatments and outcomes have improved, but possess the potential to... Show moreBeing confronted with cancer is a life-changing event, with major impact to well-being, quality of life and relationships. Cancer treatments and outcomes have improved, but possess the potential to impair reproductive and sexual function. International guidelines highlight the importance of timely discussion of sexual function and fertility deterioration resulting from treatments. In spite of these developments, practice behaviour and attitudes of health professionals have been reported to vary.The first part of this thesis demonstrates barriers among oncology professionals in the Netherlands in discussing sexual function during daily practice. In general, consensus exists regarding responsibility for addressing sexual dysfunction. Despite, the implementation of discussing sexual function as a standard of care is not carried out structural.Part two describes practice routines concerning the counselling on impaired fertility and fertility preservation for cancer patients of reproductive age. Medical oncologists and oncology nurses both reported discussing the impact of treatment on fertility. However, it was not performed in all cases and depending on factors like educational level, experience, type of hospital, prognosis and chances of fertility recovery.Furthermore, testicular cancer patients were evaluated on specific items concerning the discussion, referral and process of semen cryopreservation. Long term reproductive concerns were identified among survivors. Show less
The aim of this thesis was to investigate different aspects of quality of life and quality of death for people with dementia in nursing homes.Quality of life was measured with the QUALIDEM, an... Show moreThe aim of this thesis was to investigate different aspects of quality of life and quality of death for people with dementia in nursing homes.Quality of life was measured with the QUALIDEM, an observation instrument. As an intervention, half of the care teams implemented a step-by-step method in addition to training about behavior and pain. The research showed that underlying conditions such as lung and psychiatric diseases, pain and behavioral problems have a negative influence on quality of life. In addition, after 3 months, the residents were less restless and tense. Between 3 and 6 months this was no longer the case, but the social isolation did decrease.Quality of dying is often determined by the presence or absence of symptoms such as pain. Respondents were satisfied with the implementation of the Liverpool Care Pathway, but it was felt that recognizing the dying phase can be very difficult, especially in people with dementia. In the case of an expected death with extra attention to symptom burden, the dying phase proceeded with fewer symptoms. In recent years, relatives' satisfaction with care in the last period until death has increased, although the symptom burden has not decreased. Show less
This thesis addresses current treatment strategies in older cancer patients, as well as the consequences of these decisions for clinical outcomes. In addition, this thesis investigated the value of... Show moreThis thesis addresses current treatment strategies in older cancer patients, as well as the consequences of these decisions for clinical outcomes. In addition, this thesis investigated the value of frailty assessment in different cancer populations and described the implementation of a multidisciplinary team approach in frail older cancer patients. Show less
Over recent years, several new anti-cancer agents, like enzalutamide, abiraterone and radium-223 were introduced for treatment of patients with metastatic castration-resistant prostate cancer ... Show moreOver recent years, several new anti-cancer agents, like enzalutamide, abiraterone and radium-223 were introduced for treatment of patients with metastatic castration-resistant prostate cancer (mCRPC). The phase-3 studies evaluating these agents were primarily performed in patients only treated with docetaxel, because the studies were performed in parallel to each other. The efficacy and safety of sequentially treating patients with these new agents was unknown. This thesis describes the efficacy and tolerability of enzalutamide in patients pretreated with docetaxel and abiraterone. Because the response chance of enzalutamide in this cohort was significantly lower, an analysis of patient- and disease characteristics was performed to identify the responders. Also, the efficacy and tolerability of enzalutamide in heavily pretreated patients was also evaluated.Radium-223 is the first radionuclide with a survival benefit in mCRPC patients, this was concluded based on a study performed in patients treated with docetaxel or treatment-naïve patients. Even though painful bone metastases are the main reason for treatment with radionuclides, the effect of radium-223 on pain was not properly evaluated. This thesis describes the results of the observational ROTOR-registry, which evaluated the efficacy, tolerability, effect on pain and quality of life of Radium-223 in contemporary extensively pretreated mCRPC patients. Show less
Since cancer survival rates are rising, there is growing attention for longterm side effects of cancer and its treatment. A common side effect is the negative impact of treatment on sexuality of... Show moreSince cancer survival rates are rising, there is growing attention for longterm side effects of cancer and its treatment. A common side effect is the negative impact of treatment on sexuality of patients and their partners. Patient and partners as well as healthcare professionals experience several barriers to discuss this topic, like lack of time and lack of knowlegde. Two-thirds of the cancer patients reported to be in need of information regarding sexual health; especially those who were younger, who reported a negative impact of cancer on sexuality and those who were diagnosed less than two years ago. Patients and partners reported to prefer to discuss sexual health with nurse practitioners throughout the treatment proces. Besides, satisfaction with sexual life after treatment is related to satisfaction before treatment, not only with current sexual function.Widely available information and defining responsibility within the oncology treatment team would be helpful to improve communication around sexual health in cancer care. Additionally, specialized clinics would tackle soms frequently reported barriers of discussing sexuality. More reseach is needed on the implementation of sexual healthcare in oncology practice to deliver continuum of care, which will ultimately improve patient care. Show less
In this thesis we aimed to investigate the burden of axial spondyloarthritis (axSpA) in an early phase. We have emphasized three main themes: (1) the value of a positive family history of SpA; (2)... Show moreIn this thesis we aimed to investigate the burden of axial spondyloarthritis (axSpA) in an early phase. We have emphasized three main themes: (1) the value of a positive family history of SpA; (2) the impact of axSpA on health outcomes in an early phase of axSpA; and (3) illness perceptions and coping strategies of patients with axSpA.We have shown that when broad HLA-B27 testing is not useful, the presence of a positive family history of axSpA or uveitis could be used to predict HLA-B27 positivity in patients suspected of axSpA. We have demonstrated that health-related quality of life work productivity, and daily activities are seriously impacted even in the earliest phase of the axSpA and remain substantial over time. We have further shown that illness perceptions are important in the relationship between back pain and health outcomes in patients with axSpA. Our results suggest that illness perceptions and coping strategies do not change spontaneously and are rather independent of a decrease in disease status in patients with early axSpA.The knowledge and insights of this thesis could help us in making a timely diagnosis, providing treatment sooner, and exploring additional treatment options, which in turn could hopefully reduce the burden of axSpA. Show less
By implementation of MRI-based staging, selective preoperative radiotherapy and surgical resection according to the TME-principle, the outcomes for patients with locally advanced rectal cancer have... Show moreBy implementation of MRI-based staging, selective preoperative radiotherapy and surgical resection according to the TME-principle, the outcomes for patients with locally advanced rectal cancer have improved considerably over the last decades. This has led to an increased focus on quality of life, functional outcomes and shared decision making. In this thesis, novel treatment options for patients with locally advanced rectal cancer are evaluated, including watch and wait for patients with a complete response after chemoradiotherapy as well as a total neoadjudant therapy (TNT) approach. Also quality of life and the importance patients assign to several outcome measures after ungoqing treatment for rectal cancer themselves are described. Show less
The current knowledge on ABI is focused on children and the physical and cognitive outcomes. Fatigue is one of the most reported symptoms after ABI. The current thesis focuses on the adolescent... Show moreThe current knowledge on ABI is focused on children and the physical and cognitive outcomes. Fatigue is one of the most reported symptoms after ABI. The current thesis focuses on the adolescent and young adult age group and the impact of ABI on fatigue, physical activity and participation. Show less
The aim of this thesis is to examine employment and driving ability in gene carriers with Huntington’s disease (HD). HD is an autosomal-dominant inherited neurodegenerative disorder and manifests... Show moreThe aim of this thesis is to examine employment and driving ability in gene carriers with Huntington’s disease (HD). HD is an autosomal-dominant inherited neurodegenerative disorder and manifests during mid adulthood. The disease is clinically characterized by motor disturbances, cognitive decline and behavioral changes. Since there is currently no cure for HD, the focus of treatment is on improving quality of life and providing the necessary support to patients and families. Maintaining independence through employment and driving, for as long and as safely as possible, has a substantial influence on a patient’s general functioning. Our results consistently showed that the cognitive and behavioral changes of HD are more debilitating in daily life than the characteristic motor signs, and are associated with employment and driving a car. Healthcare professionals should be educated about HD to allow them to provide appropriate information to patients and families when discussing possible changes in working and driving as a result of HD. Individual evaluation of driving ability is warranted and the recommendation to stop driving should not solely be based on disease stage or a genetic confirmation. Multidisciplinary screening, using a HD-specific test battery, is recommended and should be embedded in the clinic. Show less
This thesis aimed to provide insight in quality of life (QOL) as an outcome in pre-dialysis patients by investigating appropriate ways to measure this construct and by investigating factors... Show moreThis thesis aimed to provide insight in quality of life (QOL) as an outcome in pre-dialysis patients by investigating appropriate ways to measure this construct and by investigating factors affecting QOL. The second aim was to increase the understanding of the different associations between several cardiovascular risk factors and traditional outcomes in pre-dialysis and dialysis patients. In elderly pre-dialysis patients symptoms have a substantial impact on QOL. The effect of symptoms on a relevant outcome measure indicates symptoms which in turn affect other important outcomes, should have a more prominent role in clinical decision making. An appropriate way to measure the construct QOL in pre-dialysis patients with a short questionnaire is by using the SF-12. No association between dyslipidemia and start of dialysis in pre-dialysis patients was found. In pre-dialysis patients, both dual RAS blockade and single ACEi-use were associated with a lower risk of RRT or death, as compared with no RAS blockade. There is no association between vitamin K antagonist use and rate of renal function decline or time until start of dialysis in the pre-dialysis population. Vitamin K-antagonist use compared to no vitamin K-antagonist use is associated with an increased all-cause mortality risk in dialysis patients. Show less
This thesis focuses on several aspects of quality of life in patients with painful bone metastases, treated with palliative radiotherapy within the randomized Dutch Bone Metastasis Study.The... Show moreThis thesis focuses on several aspects of quality of life in patients with painful bone metastases, treated with palliative radiotherapy within the randomized Dutch Bone Metastasis Study.The detailed course of quality of life after treatment was studied, as was the relation between a pain response and quality of life. Also prognostic factors predicting a pain response, psychological distress, side-effects and survival were studied. Show less
Arthropathies are the most common extra-intestinal manifestations of inflammatory bowel disease (IBD), affecting approximately 30% of patients. Symptoms may be debilitating and have a... Show moreArthropathies are the most common extra-intestinal manifestations of inflammatory bowel disease (IBD), affecting approximately 30% of patients. Symptoms may be debilitating and have a considerable impact on quality of life. IBD-associated arthropathies can be divided into inflammatory and non-inflammatory joint pain and may involve both axial and peripheral joints. Non-inflammatory joint pain, or arthralgia, is one of the most common complaint in daily IBD practice, but has not yet been studied systematically. For the gastroenterologist, joint/back pain can be challenging symptoms to diagnose and many have difficulties in differentiating arthralgia from arthritis. Since gastroenterologists are, in general, unfamiliar with the diagnosis and management of joint/back pain, it seems warranted that IBD joint complaints should be classified according to existing rheumatologic standards, thus allowing appropriate multi-disciplinary management. Show less
The thesis reports about the effects of music therapy with patients in the late stage of Huntington's disease. A literature review, a focus group study, a randomized controlled trial, an... Show moreThe thesis reports about the effects of music therapy with patients in the late stage of Huntington's disease. A literature review, a focus group study, a randomized controlled trial, an evaluation for complex interventions and a case report study are integrated in the thesis. The beneficial effects of music therapy could not be proven with the RCT-design and outcome measures that have been used. The beneficial effects of music therapy could not be proven with the RCT-design and outcome measures that have been used in the effect study. This outcome could imply that either music therapy is not effective in HD, or that the chosen study design or the primary endpoints (communication and expressive skills and behavior) were not appropriate to show the effectiveness of music therapy. A process evaluation of the RCT was executed to elucidate the results and to investigate how the study was performed. Show less
This thesis investigates different aspects of apathy - as a distinct clinical syndrome assessed with the Apathy Scale- in older persons with and without concurrent depression. In Chapter 2,... Show moreThis thesis investigates different aspects of apathy - as a distinct clinical syndrome assessed with the Apathy Scale- in older persons with and without concurrent depression. In Chapter 2, clinically relevant subtypes of apathy according to the Apathy Scale in older persons from the PROMODE study are examined, using data-driven Latent Class Analysis (LCA). Further, specific characteristics across the classes identified by LCA are investigated. Then, in Chapter 3, cross-sectionally the prevalence, severity and clinical profile of apathy in depressed and non-depressed older persons, in relation to various possible determinants is described. Chapter 4 examines which characteristics predict, over a 2-year period, the incidence and course of apathy in at baseline depressed older persons from the NESDO study. Chapter 5, using data of the NESDO and NESDA, investigates the presence of apathy in late-life compared to early-life depression, and various determinants of clinically relevant apathy in older compared to younger depressed persons. In Chapter 6 the association of the presence of apathy among community-dwelling older persons from the PROMODE study and a diminished quality of life is examined. All results are placed a current perspective in Chapter 7 that also discusses clinical implications, and makes some recommendations for future research. Show less
In this thesis, quantitative and qualitative evidence was gathered in an attempt to improve and extend the current sexual health care of gynaecological cancer survivors. Although surgery has a... Show moreIn this thesis, quantitative and qualitative evidence was gathered in an attempt to improve and extend the current sexual health care of gynaecological cancer survivors. Although surgery has a major impact on sexual functioning, vaginal changes and symptoms have been shown to be more profound after intensive radiotherapy. Therefore, the studies in this thesis were especially focused on gynaecological cancer survivors who received radiotherapy, and mainly concerned cervical cancer patients; a relatively young patient population often treated with intensive external-beam radiation therapy (EBRT) in combination concurrent chemotherapy, and intrauterine and vaginal brachytherapy (BT), although the results are equally relevant to other gynaecological cancer patients treated with EBRT with or without BT. In order to assess what type of patient education and/or support would be needed to minimise the impact of gynaecological cancer treatment on sexual functioning, and to improve the survivors’ sexual recovery we followed several approaches: assessment of survivors’ experience with sexual distress after treatment, and unmet needs for psychosexual counselling and support; it was explored how survivors and professionals could best deal with treatment-induced vaginal changes; and, partly based on the previous findings, a sexual rehabilitation intervention was developed and evaluated in a pilot study. Show less
In this thesis long-term effects and quality of life after treatment for rectal cancer are evaluated. Long-term data were assessed from the TME trial. In this trial 1530 Dutch patients with... Show moreIn this thesis long-term effects and quality of life after treatment for rectal cancer are evaluated. Long-term data were assessed from the TME trial. In this trial 1530 Dutch patients with rectal cancer were included between 1996 and 1999. These patients were randomly assigned to total mesorectal excision (TME) or to short-course preoperative radiotherapy (5x5 Gy) followed by TME surgery. Show less
Concluderend, er worden drie hoofdthema__s in dit proefschrift besproken: ten eerste incidentie en epidemiologie van BC__s, ten tweede de kwaliteit van zorg en ten derde de kwaliteit van leven.... Show moreConcluderend, er worden drie hoofdthema__s in dit proefschrift besproken: ten eerste incidentie en epidemiologie van BC__s, ten tweede de kwaliteit van zorg en ten derde de kwaliteit van leven. Deze drie thema__s leggen het fundament voor meer (medisch) onderzoek binnen de Nederlandse krijgsmacht. Optimalisatie van de behandeling van gevechtsgewonden gaat verder dan de medisch ondersteunende organisatie. Vroege betrokkenheid van buddy__s, familieleden, medisch personeel en tactisch commandanten is bevorderlijk voor eenieder. Een volledig ge_ntegreerde aanpak binnen de Defensie organisatie is noodzakelijk. Militaire Geneeskunde is een continu evoluerend proces, waarbij alle mogelijkheden moeten worden aangewend om dit proces te optimaliseren. De integratie van prospectieve studies zal de kwaliteit van lessons learned van elk gewapend conflict verhogen. Er is een sterke overeenkomst met rampengeneeskunde en rampenchirurgie. Samenwerking van rampengeneeskunde en militaire geneeskunde kan daarom nuttig zijn. Als de resultaten omschreven in dit proefschrift kunnen bijdragen aan de verbetering van de kwaliteit van de medisch ondersteunende organisatie, de opleiding van medisch en niet-medisch personeel en de kwaliteit van leven van alle betrokkenen met meer dan een procent, dan is het doel bereikt. Show less
Although modern treatment strategies have made Hodgkin Lymphoma (HL) a highly curable disease, there is a life-long increased risk of morbidity and mortality due to treatment. Over time it has... Show moreAlthough modern treatment strategies have made Hodgkin Lymphoma (HL) a highly curable disease, there is a life-long increased risk of morbidity and mortality due to treatment. Over time it has become increasingly evident that the historically used extensive treatment fields can potentially lead to numerous long-term adverse effects, often presenting clinically with a delay of more than 10-15 years. Epidemiological studies have shown an increased risks of second malignancies in HL survivors. HL survivors treated with mediastinal radiotherapy also have increased risk of late cardiac complications such as myocardial infarction, which might be due to radiation-induced coronary artery stenosis. All these adverse effects can severely impact health-related quality of life. This thesis investigates the long-term sequelae that HL survivors may encounter. The long-term risk of secondary skin cancers after radiotherapy in HL survivors was evaluated, and compared to the risks in the general Dutch population. The feasibility of screening for coronary artery disease by means of computed tomography coronary angiography (CTA) in HL survivors was investigated, and also satisfaction with information provision and the psychological burden of screening. Furthermore, the prevalence of fatigue in HL survivors compared with the general Dutch population, and associations with predisposing factors were assessed. Show less
