Purpose: Negative impact of cancer on sexuality is widely known. In adolescents and young adults with cancer (AYA; 15-39 years), treatment can even have a bigger impact as it may interfere with... Show morePurpose: Negative impact of cancer on sexuality is widely known. In adolescents and young adults with cancer (AYA; 15-39 years), treatment can even have a bigger impact as it may interfere with sexual development. AYAs report unmet psychosexual needs, like inadequate support from health care professionals (HCPs). The aim of this study was to determine preferences of AYAs regarding communication about intimacy and sexuality and examine discrepancies between AYA and HCP.Methods: A cross-sectional survey was conducted among AYAs and HCPs in the Netherlands.Results: Communication about sexuality was considered important by >90% of AYAs and HCPs. Of the AYAs, 41% did receive information from a HCP, 21% of them was satisfied with it. HCPs held physicians and nurse practitioners responsible to discuss sexuality; AYAs preferred nurse practitioners and sexologists. Main barriers to initiate a discussion on sexuality are "feeling of shame" for AYAs and "presence of a third party" for HCPs. Most AYAs would like to receive information about sexuality through a website (66%) or conversation with a HCP (64%) before start of treatment (64%). HCPs would be helped by written material (75%) and additional training (71%) to give to AYAs.Conclusion: AYAs do report unmet needs regarding adequate communication about sexuality-related issues. Discrepancy between patients and HCPs illustrates the importance of patient participation. Future research needs to focus on interventions to improve sexuality-related information provision and implementation of these interventions. Show less
Aim: Evaluate quality of life (QoL) in patients with advanced non-small cell lung cancer treated with second or third line nab-paclitaxel +/- durvalumab. Patients & methods: Longitudinal QoL... Show moreAim: Evaluate quality of life (QoL) in patients with advanced non-small cell lung cancer treated with second or third line nab-paclitaxel +/- durvalumab. Patients & methods: Longitudinal QoL was assessed using Lung Cancer Symptom Scale, EuroQoL Five-Dimensions Five-Levels and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire 30-item core. Results: QoL was generally stable through eight treatment cycles (both arms). Clinically meaningful improvement from baseline was noted in Lung Cancer Symptom Scale (overall constitutional score and three-item index [nab-paclitaxel + durvalumab]) and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire 30-item core (global health status/QoL and emotional functioning [both arms] and pain [nab-paclitaxel + durvalumab]) analyses. EuroQoL Five-Dimensions Five-Levels domains were stable/improved or completely resolved at least once in 19-56% and 9-51% of patients, respectively. Conclusion: While QoL trends were promising, additional data are required to support these regimens in this setting. Show less
Holst, M. van der; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2020
To investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents... Show moreTo investigate health-care use (HCU) and information needs of children aged 0-18 years with neonatal brachial plexus palsy (NBPP), a cross-sectional study was performed. Patients and/or parents seen in our NBPP clinic were invited to complete a survey comprising questions on HCU due to NBPP and current information needs. Outcomes were described for three age-groups (0-1/2-9/10-18 years), based on follow-up status (early/late/no-discharge). Four hundred sixty-five parents/patients participated (59 in the 0-1, 226 in the 2-9, and 180 in the 10-18-year group). Two hundred ninety-three patients had C5-C6 lesions, 193 were discharged from follow-up, 83 of whom categorized as 'early discharged' (<1 year of age). Over the past year, 198 patients had contact with the expert team (49 in the 0-1, 81 in the 2-9, and 68 in the 10-18-year group) and 288 with at least one other health-care professional (53 in the 0-1, 133 in the 2-9, and 102 in the 10-18-year group). Of the 83 patients discharged early, 34 reported health-care use. Two hundred twenty-eight participants reported current information needs of whom 23 were discharged early. HCU and information needs of Dutch children with NBPP remains considerable even in children who were discharged. Stricter follow-up and information provision for these patients is needed. Show less
There are indications that ultraviolet B (UVB) exposure has beneficial effects on well-being through mechanisms other than vitamin D synthesis alone. We conducted a randomized controlled... Show moreThere are indications that ultraviolet B (UVB) exposure has beneficial effects on well-being through mechanisms other than vitamin D synthesis alone. We conducted a randomized controlled multicenter trial to compare the effects of UVB light and vitamin D supplementation (VD) in terms of the well-being of nursing home residents with dementia. Participants were randomly assigned to the intervention group (UVB group, n = 41; half-body UVB irradiation, twice weekly over 6 months, with 1 standard erythema dose (SED)) or to the control group (VD group, n = 37; 5600 International units (IU) cholecalciferol supplementation once a week). The main outcome was well-being, measured by the Cohen-Mansfield Agitation Inventory (CMAI) and the Cornell scale for depression in dementia at 0, 3, and 6 months. Secondary outcomes were QUALIDEM quality of life domains and biochemical parameters of bone homeostasis. Intention-to-treat analysis with linear mixed modeling showed no significant between-group differences on agitation (p = 0.431) or depressive symptoms (p = 0.982). At six months, the UVB group showed less restless/tense behavior compared to the VD group (mean difference of the mean change scores 2.2, 95% CI 0.8 to 3.6; p = 0.003 for group x time interaction) and lower serum 25(OH)D3 concentration (estimated mean difference - 21.9, 95% CI -32.6 to -11.2; p = 0.003 for group difference). The exposure of nursing home residents with dementia to UVB light showed no positive benefits in terms of wellbeing. UVB treatment may have a positive effect on the restless/tense behavior characteristic of advanced dementia but more research is needed to confirm this finding. Show less
Background and purpose Subthalamic deep brain stimulation (STN DBS) is an effective therapy against medication-refractory motor complications in patients with Parkinson's disease. However, it... Show moreBackground and purpose Subthalamic deep brain stimulation (STN DBS) is an effective therapy against medication-refractory motor complications in patients with Parkinson's disease. However, it remains difficult to predict which baseline patient characteristics are associated with quality of life (QoL) after surgery. The objective was to identify preoperative factors associated with QoL after STN DBS by systematically reviewing publications of sufficient methodological quality. Methods Main databases were systematically searched up to March 2019 to identify studies that investigated factors associated with QoL after STN DBS in patients with idiopathic Parkinson's disease. Results In all, 869 studies were identified, of which 18 fulfilled the inclusion criteria. Higher QoL after DBS appears to be associated with a large preoperative difference between ON and OFF motor function in some studies, although there was no clear association of severity of motor function or motor complications with postoperative QoL. Lower severity of dyskinesias was associated with greater postoperative QoL improvement but has been insufficiently studied. Higher baseline QoL was suggestive of higher postoperative QoL. Four studies suggested that older age at surgery is associated with a lower improvement, although six other studies reported no association. No or limited evidence was found for cognitive impairment or psychiatric dysfunction. Conclusion Various relative contraindications for STN DBS such as cognitive impairment and psychiatric dysfunction appear to be unrelated to postoperative QoL. However, the lack of clear correlations with disease-related variables suggests that QoL may be individually influenced by other factors, indicating that an ideal preoperative patient profile with regard to QoL improvement cannot be readily provided. Show less
Schröter, M.; Başak, E.; Christie, M.; Church, A.; Keune, H.; Osipova, E.; ... ; Martín-López, B. 2020
Relational values are values of desirable relationships between people and nature and among people (through nature). We report on the approach to capture relational values of nature’s contributions... Show moreRelational values are values of desirable relationships between people and nature and among people (through nature). We report on the approach to capture relational values of nature’s contributions to people in the regional assessment for Europe and Central Asia of the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services (IPBES). We present a framework considering indicators along four relational value dimensions about people’s relationships with nature: security and sovereignty; health; equity and justice; and heritage, social identity and stewardship. The framework has been operationalized for three nature’s contributions to people (NCP): regulation of freshwater quality and quantity, food and feed, and physical and psychological experiences derived from nature. We identify ways to empirically assess relational values of nature’s contributions to people at regional and continental scales with social-ecological indicators and proxies, ranging from biophysical indicators to indicators that intersect socio-economic with biophysical data. We conclude that many of the identified indicators can be considered as useful proxies of relational values in a quantitative way. The analysis shows that relational values are essential to consider at the science-policy interface as they are an important set of values that people hold about nature and that go beyond instrumental relations. Show less
Purpose: Examine illness perceptions, functional health and quality of life of lung cancer patients throughout chemotherapy treatment.Patients and Methods: Longitudinal design with baseline measure... Show morePurpose: Examine illness perceptions, functional health and quality of life of lung cancer patients throughout chemotherapy treatment.Patients and Methods: Longitudinal design with baseline measure 12 days after the first chemotherapy and follow-up measure 3 months later, where illness perceptions (BIPQ), functional health, and quality of life (EORTC QLQ-C-30) were measured. A total of 21 patients with non-small-cell lung cancer took part. Non-parametric testing was performed given the pilot nature of the study and the associated relatively small sample size.Results: Small to medium changes in illness perceptions and functional health between the two measurement points were detected, with both becoming more positive. More negative illness perceptions at the beginning of the treatment were associated with less functioning and lower quality of life at both beginning and end of treatment.Conclusion: Addressing illness perceptions seems a clinically relevant approach in improving functioning and quality of life of patients with non-small-cell lung cancer. Show less
Blaauwgeers, M.W.; Kruip, M.J.H.A.; Beckers, E.A.M.; Coppens, M.; Eikenboom, J.; Galen, K.P.M. van; ... ; TiN Study Grp 2019
Background Patients with congenital blood platelet disorders (CPDs) demonstrate a predominantly mucocutaneous bleeding tendency. Repeated bleeds throughout life can have a significant impact on... Show moreBackground Patients with congenital blood platelet disorders (CPDs) demonstrate a predominantly mucocutaneous bleeding tendency. Repeated bleeds throughout life can have a significant impact on health status-related quality of life (HR-QoL), but few studies have investigated HR-QoL in patients with CPDs. Objectives To determine HR-QoL in patients with suspected or confirmed CPDs as compared with the general Dutch population and to assess the association between bleeding phenotype and HR-QoL. Methods Data were derived from the Thrombocytopathy in the Netherlands (TiN) study, a cross-sectional study of individuals suspected for a congenital platelet defect. TiN patients with an increased ISTH Bleeding Assessment Tool (ISTH-BAT) score (>3 in men and > 5 in women) were included for analysis. HR-QoL was assessed with the Short Form (SF)-36 survey. Bleeding symptoms were evaluated with the ISTH-BAT, resulting in a bleeding score. Results One hundred fifty-six patients were analyzed, of whom 126 (81%) were women. Sixty-two patients (40%) had a confirmed CPD. Compared to the general Dutch population, patients with a suspected or confirmed CPD reported decreased physical functioning, limitations in daily activities due to physical health problems, limitations in social activities, decreased energy levels and fatigue, pain, and lower general health status. HR-QoL was not correlated with the ISTH-BAT score and was similar in patients with a confirmed CPD and those in whom a CPD could not be diagnosed. Conclusion A bleeding tendency in patients with a suspected or confirmed CPD significantly impacts HR-QoL, independent of a confirmed explanatory diagnosis. Show less
Markus-Doornbosch, F. van; Holst, M. van der; Kloet, A.J. de; Vlieland, T.P.M.V.; Meesters, J.J.L. 2019
Purpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study... Show morePurpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study with AYAs aged 14-25 years, diagnosed with ABI. The PedsQL (TM) Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL (TM) 4.0 Generic Core Scales were administered. Results: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (beta 0.64, 95%CI 0.44, 0.85) and diminished QoL (beta 0.87, 95%CI 0.72, 1.02). Conclusions: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL. Show less
People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of... Show morePeople with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing's disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners. Show less
Voskamp, P.W.M.; Diepen, M. van; Evans, M.; Caskey, F.J.; Torino, C.; Postorino, M.; ... ; EQUAL Study Investigators 2019
Background. Quality of life (QoL) is an important outcome in chronic kidney disease (CKD). Patients feel that symptoms are an important determinant of QoL. However, this relation is unknown. The... Show moreBackground. Quality of life (QoL) is an important outcome in chronic kidney disease (CKD). Patients feel that symptoms are an important determinant of QoL. However, this relation is unknown. The aims of this study were to investigate the impact of the number and severity of symptoms on QoL in elderly pre-dialysis patients, assessed by both the effect of symptoms and their importance relative to kidney function, and other clinical variables on QoL.Methods. The European Quality study (EQUAL study) is an ongoing European prospective follow-up study in late Stage 4/5 CKD patients aged >= 65 years. We used patients included between March 2012 and December 2015. Patients scored their symptoms with the Dialysis Symptom Index, and QoL with the research and development-36 (RAND-36) item Health Survey (RAND-36). The RAND-36 results in a physical component summary (PCS) and a mental component summary (MCS). We used linear regression to estimate the relation between symptoms and QoL at baseline and after 6 months, and to calculate the variance in QoL explained by symptoms.Results. The baseline questionnaire was filled in by 1079 (73%) patients (median age 75 years, 66% male, 98% Caucasian), and the follow up questionnaire by 627 (42%) patients. At baseline, every additional symptom changed MCS with -0.81 [95% confidence interval (CI): -0.91 to -0.71] and PCS with -0.50 (95% CI: -0.62 to -0.39). In univariable analyses, number of symptoms explained 22% of MCS variance and 11% of PCS variance, whereas estimated glomerular filtration rate only explained 1%.Conclusions. In elderly CKD Stage 4/5 patients, symptoms have a substantial impact on QoL. This indicates symptoms should have a more prominent role in clinical decision-making. Show less
Kaasalainen, S.; Hunter, P.V.; Hill, C.; Moss, R.; Kim, J.; Steen, J.T. van der; ... ; Hadjistavropoulos, T. 2019
Objective The definition of recovery in eating disorders (EDs) according to researchers is not necessarily similar to the patient definition. This study aimed to explore the concept of recovery as... Show moreObjective The definition of recovery in eating disorders (EDs) according to researchers is not necessarily similar to the patient definition. This study aimed to explore the concept of recovery as assessed by those affected by an ED themselves. Method Participants from the Netherlands Eating disorder Registry (NER) who reported an (former) ED diagnosis (n = 814) assessed their own recovery level: current ED, partial or full recovery. Furthermore, research-based criteria (Bardone-Cone et al., Behaviour Research and Therapy, 2010, 48, 194-202) were applied to define recovery. Within the self-assessed full recovery group (n = 179), participants who also fulfilled the research-based criteria were compared to those who were only recovered based on self-assessment in the following domains: ED psychopathology, psychiatric comorbidity, quality of life, and social and societal participation. Results Ninety-six of the participants (54%) who considered themselves recovered did not fulfill the research-based definition. The two recovery groups did not significantly differ in psychiatric comorbidity, quality of life, and social and societal participation. Discussion Absence of ED characteristics was not essential for individuals to consider themselves recovered. Although the self-assessed recovery status may be subjective, it does advocate the use of additional health indicators besides ED psychopathology when defining recovery. Show less
Aubeeluck, A.; Stupple, E.J.N.; Schofield, M.B.; Hughes, A.C.; Meer, L. van der; Landwehrmeyer, B.; Ho, A.K. 2019
Family carers of individuals living with Huntington's disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of... Show moreFamily carers of individuals living with Huntington's disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life (QoL) for this group. The Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) was expanded (n = 47) and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half of the sample demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs)(n = 23) was developed based on more stringent criteria. This was achieved using standard psychometric item reduction techniques to both increase reliability and reduce the burden of carers completing the scale. Confirmatory factor analysis of the model structure showed a good fit for all factors and indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of QoL. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future, and overall QoL. Carers with children who were at risk carried the gene or were symptomatic also had poorer QoL outcomes. Findings indicated the HDQoL-C and HDCoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported QoL in family carers of individual's living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population and research into international and cross-cultural carer experiences. The HDQoL-Cs is recommended as the definitive international measure of HD carer QoL. Show less
Pituitary diseases are rare conditions with severe chronic multi-organ and multisystemic morbidity requiring complex multidisciplinary treatment and usually life-long drug treatment. Most cases are... Show morePituitary diseases are rare conditions with severe chronic multi-organ and multisystemic morbidity requiring complex multidisciplinary treatment and usually life-long drug treatment. Most cases are caused by functioning or non-functioning pituitary adenoma. From the patient's perspective, the burden of disease is caused by the tumour itself and associated compression symptoms, interventions, hormone excess and deficiencies, systemic manifestations of these endocrine abnormalities and general psychosocial issues that can manifest in patients with a chronic condition. In this review, patient burden is classified according to classic endocrine syndromes, with burden at diagnosis and after long-term remission, and also within the framework of value-based health care and the conceptual model of wellbeing. The recently developed patient-reported outcome measurement tool that helps to evaluate burden of patients is also discussed. (C) 2019 Elsevier Ltd. All rights reserved. Show less
Atiq, F.; Mauser-Bunschoten, E.P.; Eikenboom, J.; Galen, K.P.M. van; Meijer, K.; Meris, J. de; ... ; WiN Study Grp 2019
