Objectives This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including... Show moreObjectives This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.Design Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline.Data sources PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023.Eligibility criteria Studies reporting on family involvement in interventions for nursing home residents with dementia were included.Data extraction and synthesis Two researchers independently extracted the data, followed by a content analysis.Results Of the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family’s coping and skills).Conclusion Best practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account. Show less
This thesis focuses on treatment outcomes of high risk endometrial cancer and corresponding patients’ and clinicians’ preferences regarding adjuvant treatment decisions; molecular studies on the... Show moreThis thesis focuses on treatment outcomes of high risk endometrial cancer and corresponding patients’ and clinicians’ preferences regarding adjuvant treatment decisions; molecular studies on the etiology of mismatch repair deficiency (MMRd) in intermediate and high risk endometrial cancer; and the combination of immunotherapy and PARP inhibition for the treatment of recurrent or metastatic endometrial cancer.The overall aims of this thesis were:• To evaluate health-related quality of life up to 5 years after chemoradiotherapy compared with pelvic radiotherapy alone in the adjuvant treatment of high risk endometrial cancer in the PORTEC-3 trial;• To investigate the preferences of patients and clinicians regarding the benefit-risk trade-off of the addition of chemotherapy to adjuvant pelvic radiotherapy;• To investigate the prevalence and prognosis of Lynch syndrome-associated endometrial cancer among MMRd endometrial cancers;• To evaluate the role of combined checkpoint inhibition and PARP inhibition in women with metastatic or recurrent endometrial cancer in terms of progression-free survival and toxicity in the DOMEC trial. Show less
Ravensberg, A.J.; Poortvliet, R.K.E.; Puy, R.S. du; Dekkers, O.M.; Mooijaart, S.P.; Gussekloo, J. 2023
Background Many older persons use the thyroid hormone levothyroxine which is often continued for life. Scientifically, there is much uncertainty whether simple continuation is the optimal approach.... Show moreBackground Many older persons use the thyroid hormone levothyroxine which is often continued for life. Scientifically, there is much uncertainty whether simple continuation is the optimal approach. First, the physical need for levothyroxine can decrease with age thereby posing a higher risk of overtreatment and adverse effects. Second, large trials in subclinical hypothyroidism have shown no benefit for the use of levothyroxine. Interestingly, guidelines do not address re-evaluation of the indication. This self-controlled trial aims to determine the effects of discontinuation of levothyroxine treatment in older adults.Methods and analysis Participants are community-dwelling subjects aged ≥60 years using levothyroxine continuously at a stable dosage of ≤150 µg and a level of thyroid-stimulating hormone (TSH) <10 mU/L. After a control period of 12 weeks, levothyroxine treatment is discontinued gradually using a stepwise approach with regular monitoring of thyroid function guided by their GP. The primary outcome is the proportion of participants withdrawn from levothyroxine while maintaining a free T4 level within the reference range and a TSH level <10 mU/L, 52 weeks after the start of discontinuation. Secondary outcomes are compared with the control period (self-controlled) and include among others, the effects on thyroid-specific and general health-related quality of life. Furthermore, patients’ attitudes towards deprescribing and regret regarding discontinuing levothyroxine treatment will be recorded. A total of 513 participants will be recruited to estimate the expected proportion of 50% with a 95% CI ranging from 45% to 55%.Ethics and dissemination Approval was obtained from the institutional Medical Ethics Committee. The Older People Advisory Board Health and Well-being has reviewed the research proposal and their comments were used for improvement. In line with the funding policies of the grant organisation funding this study, the study results will be proactively disseminated to the general public and key public health stakeholders. Show less
Caramanna, I.; Klein, M.; Bent, M. van den; Idbaih, A.; Wick, W.; Taphoorn, M.J.B.; ... ; EORTC Brain Tumor Grp 2022
Purpose: The rate of missing data on patient-reported health-related quality of life (HRQOL) in brain tumor clinical trials is particularly high over time. One solution to this issue is the use of... Show morePurpose: The rate of missing data on patient-reported health-related quality of life (HRQOL) in brain tumor clinical trials is particularly high over time. One solution to this issue is the use of proxy (i.e., partner, relative, informal caregiver) ratings in lieu of patient-reported outcomes (PROs). In this study we investigated patient-proxy agreement on HRQOL outcomes in high-grade glioma (HGG) patients. Methods: Generic and disease-specific HRQOL were assessed using the EORTC QLQ-C30 and QLQ-BN20 in a sample of 501 patient-proxy dyads participating in EORTC trials 26101 and 26091. Patients were classified as impaired or intact, based on their neurocognitive performance. The level of patient-proxy agreement was measured using Lin's concordance correlation coefficient (CCC) and the Bland-Altman limit of agreement. The Wilcoxon signed-rank test was used to evaluate differences between patients' and proxies' HRQOL. Results: Patient-proxy agreement in all HGG patients (N = 501) ranged from 0.082 to 0.460. Only 18.8% of all patients were neurocognitively intact. Lin's CCC ranged from 0.088 to 0.455 in cognitively impaired patients and their proxies and from 0.027 to 0.538 in cognitively intact patients and their proxies. Conclusion: While patient-proxy agreement on health-related quality of life outcomes is somewhat higher in cognitively intact patients, agreement in high-grade glioma patients is low in general. In light of these findings, we suggest to cautiously consider the use of proxy's evaluation in lieu of patient-reported outcomes, regardless of patient's neurocognitive status. Show less
Graaf, J.A. de; Visser-Meily, J.M.; Schepers, V.P.; Baars, A.; Kappelle, L.J.; Passier, P.E.; ... ; Post, M.W. 2021
BACKGROUND: Although the use of patient-reported outcome measures to assess Health-Related Quality of Life (HRQoL) has been advocated, it is still open to debate which patient-reported outcome... Show moreBACKGROUND: Although the use of patient-reported outcome measures to assess Health-Related Quality of Life (HRQoL) has been advocated, it is still open to debate which patient-reported outcome measure should be preferred to evaluate HRQoL after stroke.AIM: To compare the measurement properties (including concurrent validity and discriminant ability) between the 5-dimensional 5-level Euro-Qol (EQ-5D-5L) and the Patient-Reported Outcomes Measurement Information System 10-Question Global Health Short Form (PROMIS-10) to evaluate HRQoL 3 months after stroke.DESIGN: Cross-sectional study.SETTING: Neurology outpatient clinics in 6 Dutch hospitals.POPULATION: The participants 360 consecutive individuals with stroke. Their median age was 71 years, 143 (39.7%) were female and 335 (93.0%) had suffered an ischemic stroke.METHODS: The EQ-5D-5L, PROMIS-10, modified Rankin Scale and two items on experienced decrease in health and activities post-stroke were administered by a stroke nurse or nurse practitioner through a telephone interview 3 months after stroke. The internal consistency, distribution, floor/ceiling effects, inter-correlations and discriminant ability (using the modified Rankin Scale and experienced decrease in health and in activities post-stroke as external anchors) were calculated for both the EQ-5D-5L and PROMIS-10.RESULTS: Ninety-six percent of the participants were living at home and 50.9% experienced minimal or no disabilities (modified Rankin Scale 0-1) 3 months after stroke. A ceiling effect and a non-normal left skewed distribution were observed in the EQ-5D-5L. The PROMIS-10 showed higher internal consistency (alpha=0.90) compared to the EQ-5D-5L (alpha=0.75). Both the EQ-5D-5L and the PROMIS-10 were strongly correlated with the modified Rankin Scale (r=0.62 and 0.60 respectively). The PROMIS-10 showed better discriminant ability in less affected individuals with stroke, whereas the EQ-5D-5L showed slightly better discriminant ability in more affected individuals with stroke.CONCLUSIONS: Both EQ-5D-5L and PROMIS-10 prove to be useful instruments to evaluate HRQoL in patients who are living at home 3 months after stroke.CLINICAL REHABILITATION IMPACT: The clinical rehabilitation impact depended on the setting and underlying goal which patient-reported outcome measure is preferred to evaluate HRQoL 3 months after stroke. The PROMIS-10 should be preferred to detect differences in less affected stroke patients, whereas the EQ-5D-5L provides slightly more information in more affected stroke patients. Show less
Patients with Parkinson's Disease may be eligible for Deep Brain Stimulation (DBS) in case of severe motor complications. This thesis provides indications for improving patient selection for DBS,... Show morePatients with Parkinson's Disease may be eligible for Deep Brain Stimulation (DBS) in case of severe motor complications. This thesis provides indications for improving patient selection for DBS, as well as describing new biomarkers based on Electroencephalography (EEG) to aid during the DBS selection process. Show less
Het aantal heupfracturen zal de komende jaren stijgen. Bovendien zijn de morbiditeit en mortaliteit na een heupfractuur groot. Het eerste deel van het proefschrift gaat over prothesiologie bij... Show moreHet aantal heupfracturen zal de komende jaren stijgen. Bovendien zijn de morbiditeit en mortaliteit na een heupfractuur groot. Het eerste deel van het proefschrift gaat over prothesiologie bij heupfractuurpatiënten. Uit eerder onderzoek is gebleken dat een prothese de voorkeur heeft ten opzichte van osteosynthese. Hoofdstuk drie beschrijft een multicenter trail waarbij we 201 patiënten hebben gerandomiseerd tussen een gecementeerde en een ongecementeerde kophalsprothese. De patiënten met een gecementeerde prothese kregen minder complicaties (minder periprothetische fracturen en luxaties). In hoofdstuk twee beschrijven we de 22.675 patiënten die de afgelopen 10 jaar na een heupfractuur in het landelijk register zijn opgenomen. Uit dit hoofdstuk blijkt dat er minder re-operaties worden uitgevoerd na een gecementeerde prothesesteelfixatie en een niet-posterolaterale benadering. Het tweede deel van het proefschrift toont dat een heupfractuur een enorme impact heeft op het leven van de patiënt. Het percentage delier na de fractuur was hoog (27%) evenals het percentage mensen dat overleed binnen 30 dagen (8%). Kwaliteit van leven en dagelijks functioneren gingen fors achteruit en herstelden niet volledig. De patiënten die het meest achteruit gingen waren jong en mobiel voorafgaand aan de fractuur. We adviseren dan ook meer aandacht te hebben voor deze groep. Show less
Jong, R.K. de; Snoek, H.; Staal, W.G.; Klip, H. 2019
The systematic use of feedback from patients on treatment progress and treatment satisfaction is a promising method to increase treatment effectiveness. The extent to which this also applies to the... Show moreThe systematic use of feedback from patients on treatment progress and treatment satisfaction is a promising method to increase treatment effectiveness. The extent to which this also applies to the treatment of children with severe psychiatric problems is not clear. We conducted a Randomized Controlled Trial (RCT) to study the effect of adding Feedback Informed Treatment (FIT) to care as usual in a child psychiatric sample. Quality of Life (QoL) was used as the primary outcome measure and symptom severity as the second. Fifty-one therapists from eight Autism Care Teams in a multi-center facility for Child and Adolescent Psychiatry (Karakter) participated and were cluster randomized to the FIT condition (n = 4 teams) or the Care as Usual (CAU) condition (n = 4 teams). Children aged 6–18 years, mainly with an Autism Spectrum Disorder (ASD) and treated in one of the Autism Care Teams were allocated to the FIT condition (n = 86) or the CAU condition (n = 80). Results indicated that adding FIT leads to an increased QoL [F (2,165) = 3.16, p = 0.045]. No additional effects were observed for symptom severity decrease [F (2,158) = 0.19, p = 0.825]. No interaction with time was found for QoL nor symptom severity. Adding FIT in a child psychiatric setting may increase QoL, but does not appear to decrease symptom severity as compared with CAU. It is suggested that FIT positively changes parents’ expectations. Results should be replicated in other child psychiatric samples and with an extended theoretical model. Show less
Steen, J.T. van der; Smaling, H.J.A.; Wouden, J.C. van der; Bruinsma, M.S.; Scholten, R.J.P.M.; Vink, A.C. 2018
Tenosynoviale reusceltumoren (tenosynovial giant cell tumours, TGCT) zijn zeldzame goedaardige tumoren. Deze aandoening werd voorheen pigmented villonodular synovitis (PVNS) genoemd. De tumoren... Show moreTenosynoviale reusceltumoren (tenosynovial giant cell tumours, TGCT) zijn zeldzame goedaardige tumoren. Deze aandoening werd voorheen pigmented villonodular synovitis (PVNS) genoemd. De tumoren ontstaan vanuit het synoviale membraan van een gewricht, de peesschede of de slijmbeurs. De tumor kan een hoge morbiditeit veroorzaken in een relatief jonge, werkende populatie. Op grond van klinische en radiologische kenmerken worden twee typen onderscheiden: het gelokaliseerde type dat zich uit als een goed afgrensbare nodus, en het diffuse type dat lokaal invasief is. Het doel van dit proefschrift is de kennis te verbeteren van de pathofysiologie, het biologisch gedrag, het diagnostisch proces, de behandeling en de gezondheid gerelateerde kwaliteit van leven, ten einde effectievere behandelmethoden voor TGCT te vinden. Show less
Patients with pituitary disease in a stable medical condition demonstrate persistent morbidity. This thesis describes their health outcomes by using a biopsychosocial approach covering a... Show morePatients with pituitary disease in a stable medical condition demonstrate persistent morbidity. This thesis describes their health outcomes by using a biopsychosocial approach covering a continuum ranging from biological and physiological measures, to measures of general health perceptions, as described by the Wilson-Cleary model. Show less
Vestibular schwannomas are benign tumours originating from the vestibulocochlear nerve. Patients with vestibular schwannoma experience diminished Quality of Life from the diagnosis. A disease... Show moreVestibular schwannomas are benign tumours originating from the vestibulocochlear nerve. Patients with vestibular schwannoma experience diminished Quality of Life from the diagnosis. A disease-specific questionnaire (PANQOL) was validated for the Dutch population. Quality of Life is for 23% determined by emotional intelligence. In addition by balance disorders, cranial nerve deficits and education. The treatment choice (wait-and-scan, radiation therapy, surgery) is under discussion. Patients with small tumors (<10mm) have a better Quality of Life in a wait-and-scan policy. For (medium)large tumors no significant differences (up to 10 years after treatment) were observed. Physicians should give patients tools for the treatment choice. Vestibularis schwannomen zijn goedaardige tumoren uitgaande van de nervus vestibulocochlearis. Patiënten met een vestibularis schwannoom hebben een verlaagde Kwaliteit van Leven vanaf de diagnose. Een ziekte-specifieke vragenlijst (PANQOL) werd gevalideerd voor de Nederlandse populatie. Kwaliteit van Leven wordt voor 23% bepaald door emotionele intelligentie. Daarnaast spelen evenwichtsstoornissen, hersenzenuwuitval en opleidingsniveau een rol. De behandelkeuze (wait-and-scan, radiotherapie, chirurgie) blijft onderwerp van discussie. Patiënten met een kleine tumor (< 10 mm) hebben een betere Kwaliteit van Leven in een wait-and-scan traject. Voor (middel)grote tumoren werden tot 10 jaar na behandeling geen significante verschillen gezien. Artsen moeten patiënten handvatten bieden voor de behandelkeuze. Show less
Core deficits in people with autisme spectrum disorders (ASD) are difficulties in adapting their behaviour to the social environment which hampers the possibilities to communicate adequately and to... Show moreCore deficits in people with autisme spectrum disorders (ASD) are difficulties in adapting their behaviour to the social environment which hampers the possibilities to communicate adequately and to have reciprocal relationships. These problems have a serious impact on functioning in their daily life. Since ASD are severe and lifelong conditions, it is relevant to examine how children with ASD develop troughout their life and to investigate which factors constitute an unfavourable contribution to their development. This thesis reveals that children with ASD are at specific risk of poor quality of life in adulthood when compared to children with other psychiatric disorders. Secondly, the impact of ASD on specific domains of intellectual functioning is different at different ages, implicating that re-evaluation of cognitive function during development of children with ASD is recommended during their life. Thirdly, children with ASD who are at risk of schizophrenia spectrum pathology, may show negative schizotypal symptoms, but also disorganized and positive symptoms in addition to ASD symptomatology. These symptoms of schizotypy appear to be associated with inhibition problems. We should be aware of inhibition problems in children with ASD because they may be indicators of high risk to schizophrenia spectrum pathology later in life. Show less
In medical decision making decisions are made by using cost-utility analyses. Utilities, in cost-utility analyses, are benefits in health estimated by comparing preferences for health states to... Show moreIn medical decision making decisions are made by using cost-utility analyses. Utilities, in cost-utility analyses, are benefits in health estimated by comparing preferences for health states to perfect health and death. Whose__ utilities are used, those given by patients__ or by members of the general public, does matter. Previous research has shown that utilities given by patients are higher compared to those given by members of the public. The main objective of this thesis was to examine mechanisms that have been suggested to explain this gap between health state utilities. Most mechanisms suggested to influence this gap were only marginally explanatory except for focusing illusion and adaption. The public has the tendency to focus on the negative aspects of a health state. On the other hand patients adapt to their illness and take this adaptation into account. Due to focusing illusion of members of the public utilities will become lower whereas adaptation will lead to higher utilities. Whose utilities should be used in decision making depends on whose utilities are most valid. Utilities shaped by focusing illusion are biased however it is a matter of discussion if adaptation leads to invalid utilities. Show less
Cochlear implants (CI) have proved to be a successful treatment for severely and profoundly deaf individuals. There is general agreement that the improvement of speech perception results has been... Show moreCochlear implants (CI) have proved to be a successful treatment for severely and profoundly deaf individuals. There is general agreement that the improvement of speech perception results has been due to ongoing development in CI electrode-array design, new speech processing strategies and by implanting patients with increasing amounts of residual hearing. However, although speech perception scores are very important indicators, there may be other outcomes that give essential information on the benefits of modern CI as outlined in this thesis. By assessing Quality of Life questionnaires and utilities before and after implantation, general health status and cost-utility were evaluated in pre- and postlingually deafened adult populations. In spite of the good results, it was realized that there was still room for improvement. Therefore, a high-rate speech processing strategy was investigated, which gave evidence of further improvement of speech perception performance (especially in noise), provided that the optimum number of electrodes was determined for each patient individually. These data suggested that objective individual parameter selection is obligatory to increase performance. For this purpose, we explored and used objective measures in an experimental and clinical setting to obtain basic knowledge about the electrode-nerve interface and, finally, to optimize individual implant function Show less
This thesis describes various studies during the long-term follow-up of patients after treatment for pituitary diseases. The focus of this thesis is acromegaly, growth hormone deficiency, sleep and... Show moreThis thesis describes various studies during the long-term follow-up of patients after treatment for pituitary diseases. The focus of this thesis is acromegaly, growth hormone deficiency, sleep and quality of life. Various aspects are described. Show less