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
Patients with chronic obstructive pulmonary disease (COPD) may benefit from palliative care including advance care planning, because of their severe symptom burden and high mortality rates. However... Show morePatients with chronic obstructive pulmonary disease (COPD) may benefit from palliative care including advance care planning, because of their severe symptom burden and high mortality rates. However, this care is poorly implemented due to various reasons. Therefore, this thesis aimed to study the effectiveness of palliative care for patients with COPD and how a palliative care approach can be successfully integrated into regular COPD care.A national survey among pulmonologists and general practitioners was conducted to identify the current content and organization of palliative care in COPD in the Netherlands (Chapter 2). A systematic review revealed that very little was known about the effectiveness of palliative care interventions in COPD and how best to implement it in practice (Chapter 3). To close this knowledge gap, the COMPASSION study was designed (Chapter 4). In a cluster randomized controlled trial in eight hospital regions, health care providers of intervention regions were trained to identify palliative patients with COPD using the ProPal-COPD tool, do advance care planning conversations, and manage dyspnea. The effectiveness on patient outcomes was studied (Chapter 5) and factors for successful implementation identified (Chapter 6). Finally, the ProPal-COPD tool was externally validated and user experiences examined (Chapter 7). Show less
Persons with dementia may not always be able to set their own goals and expectations. When persons with dementia are no longer able to assess their own Quality of life (QoL), family, friends and... Show morePersons with dementia may not always be able to set their own goals and expectations. When persons with dementia are no longer able to assess their own Quality of life (QoL), family, friends and professional caregivers need to be their voice, as they are most familiar with their values, goals and needs. QoL in persons with advanced dementia is influenced by many factors, such as environment, background and psychological factors such as depression and agitation.The Q-PID study was a 13-week double-blind, randomised, placebo-controlled crossover trial that assessed the effect of paracetamol on QoL, discomfort, pain, neuropsychiatric symptoms, care dependency and daily functioning in 95 persons with moderate to advanced dementia living in long-term care facilities (LTCF).This thesis provides evidence that administration of paracetamol or placebo alone is not effective, i.e., no ‘panacea’, for improving QoL, discomfort, pain, neuropsychiatric symptoms, care dependency and dailyfunctioning in persons with advanced dementia living in LTCF. Personalizing interventions, collaborationbetween different health care workers and family/friends, and combining pharmacological and non-pharmacological interventions are important to maintain the best QoL possible, and we recognize that this will be challenging, but not impossible. Show less
With the introduction of population-based screening, early-stage colorectal cancers (T1CRCs) are increasingly detected. The treatment of patients with T1CRC is complex, as these tumors have... Show moreWith the introduction of population-based screening, early-stage colorectal cancers (T1CRCs) are increasingly detected. The treatment of patients with T1CRC is complex, as these tumors have metastatic potential despite their early stage. As a result, local organ-sparing endoscopic tumor resection is not always sufficient, thereby giving rise to various challenges throughout the entire treatment process.The overarching goal of this thesis is to improve clinical care for T1CRC patients. Part 1 is centered around the biology and translational potential of the tumor microenvironment, and in particular cancer-associated fibroblasts (CAFs), in T1CRC. The studies in this part show that CAFs in T1CRCs exhibit T1 stage-specific phenotypic traits and can promote cancer cell invasion in T1CRC through diverse mechanisms. These findings provide promising leads for developing better predictors of metastasis, which can be used to determine which T1CRC patients will (not) benefit from major bowel surgery.Part 2 focuses on the clinical aspects of T1CRC treatment. The studies in this part show that local endoscopic tumor resection has become a mature alternative to surgery, from both the patient’s and oncological perspective. However, further optimizations of local resection techniques and surveillance thereafter are needed to increase the use of organ-sparing treatment for T1CRC patients. Show less
BackgroundNon-communicable diseases are currently the leading cause of death in the Netherlands. Meeting the increasingly complex care needs of patients with these diseases is demanding for society... Show moreBackgroundNon-communicable diseases are currently the leading cause of death in the Netherlands. Meeting the increasingly complex care needs of patients with these diseases is demanding for society and our healthcare services.Specialist palliative care diminishes inappropriate end-of-life care and improves quality of life for patients with advanced cancer and other life-limiting diseases.Aims & MethodsUsing 2 national cross-sectional surveys and 2 population-based observational studies, we assessed the value, availability and accessibility of palliative care in the Dutch healthcare system. Using a modified Delphi technique, we developed a national quality framework for palliative care with key elements for integration with regular care.ResultsTimely provision of generalist and specialist palliative care is associated with significantly less potentially inappropriate end-of-life care for patients with advanced cancer.The majority of patients with cancer received no palliative care or only in their last weeks or days of life. Specialist palliative care teams were found to be available in almost all hospitals, but referrals to these teams were consistently low. Our findings implicate a limited availability and accessibility of palliative care.Eight key elements of the Netherlands Quality Framework for Palliative Care were prioritised to improve availability and accessibility to quality palliative care. Show less
In the current dissertation the effectiveness and cost-effectiveness of Featback, an internet-based self-help intervention for eating disorders, and online support by individuals with a lived... Show moreIn the current dissertation the effectiveness and cost-effectiveness of Featback, an internet-based self-help intervention for eating disorders, and online support by individuals with a lived experience of an eating disorder were investigated. The findings suggest that low-threshold internet-based interventions for eating disorders, such as Featback, can complement existing treatment options in three ways. First, they have been repeatedly found to be effective in reducing eating disorder symptomatology. Second, such interventions can reach individuals that are currently not reached by other forms of treatment and stimulate them to get professional help. Finally, internet-based interventions are likely to be cost-effective compared to care as usual. Concordantly, implementing highly scalable and easily accessible interventions like Featback likely helps to reduce both the individual and societal burden of eating disorders. 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 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