ObjectivesClinically suspect arthralgia (CSA) is an at-risk stage of rheumatoid arthritis (RA), in which patients experience symptoms and physical limitations. Perceptions of CSA-patients have... Show moreObjectivesClinically suspect arthralgia (CSA) is an at-risk stage of rheumatoid arthritis (RA), in which patients experience symptoms and physical limitations. Perceptions of CSA-patients have remained largely unknown. Therefore, we aimed to map perceptions of CSA-patients and compare these to RA-patients. Additionally, we studied changes in perceptions in CSA over time.MethodsThree hundred and ninety-nine consecutively included CSA-patients from the Leiden and Rotterdam CSA-cohorts and 100 recently diagnosed RA-patients from the Leiden Early Arthritis Clinic were included. Patients’ illness perceptions (IP) were assessed using the Brief Illness Perception Questionnaire (BIPQ), consisting of 8 questions (scale 0–10; higher score indicating more negative IP) covering cognitive, emotional and comprehensibility domains, and one open question about causes of disease. IP were measured at baseline in both populations and during 2 years follow-up in the CSA-cohorts.ResultsTotal BIPQ-scores were comparable at CSA-presentation and RA-diagnosis (40 ± 11 and 40 ± 10; range 0–80). Comparing dimensions separately revealed that CSA-patients were less worried about physical complaints compared to RA-patients. However, CSA-patients were more negative about expected treatment-effect on symptoms. IP over time in CSA improved in patients without development of clinical arthritis (from 38 ± 11 to 34 ± 14; P = 0.005) but remained similar in CSA-patients who progressed to arthritis/RA (mean 40 at both timepoints). CSA-patients mainly perceived physical strain and heredity as causes of their complaints.ConclusionsAlthough CSA-patients have not developed clinical arthritis, illness perceptions at CSA-presentation and RA-diagnosis are equally severe. Knowledge on worries and expectations may contribute to improving patient-contact and care in patients at risk of RA. Show less
Meuleman, Y.; Bent, Y. van der; Gentenaar, L.; Caskey, F.J.; Bart, H.A.J.; Konijn, W.S.; ... ; Dekker, F.W. 2023
BackgroundUnhelpful illness perceptions can be changed by means of interventions and can lead to improved outcomes. However, little is known about illness perceptions in patients with chronic... Show moreBackgroundUnhelpful illness perceptions can be changed by means of interventions and can lead to improved outcomes. However, little is known about illness perceptions in patients with chronic kidney disease (CKD) prior to kidney failure, and no tools exist in nephrology care to identify and support patients with unhelpful illness perceptions. Therefore, this study aims to: (1) identify meaningful and modifiable illness perceptions in patients with CKD prior to kidney failure; and (2) explore needs and requirements for identifying and supporting patients with unhelpful illness perceptions in nephrology care from patients' and healthcare professionals' perspectives.MethodsIndividual semi-structured interviews were conducted with purposive heterogeneous samples of Dutch patients with CKD (n = 17) and professionals (n = 10). Transcripts were analysed using a hybrid inductive and deductive approach: identified themes from the thematic analysis were hereafter organized according to Common-Sense Model of Self-Regulation principles.ResultsIllness perceptions considered most meaningful are related to the seriousness (illness identity, consequences, emotional response and illness concern) and manageability (illness coherence, personal control and treatment control) of CKD. Over time, patients developed more unhelpful seriousness-related illness perceptions and more helpful manageability-related illness perceptions, caused by: CKD diagnosis, disease progression, healthcare support and approaching kidney replacement therapy. Implementing tools to identify and discuss patients' illness perceptions was considered important, after which support for patients with unhelpful illness perceptions should be offered. Special attention should be paid towards structurally embedding psychosocial educational support for patients and caregivers to deal with CKD-related symptoms, consequences, emotions and concerns about the future.ConclusionsSeveral meaningful and modifiable illness perceptions do not change for the better by means of nephrology care. This underlines the need to identify and openly discuss illness perceptions and to support patients with unhelpful illness perceptions. Future studies should investigate whether implementing illness perception-based tools will indeed improve outcomes in CKD. Show less
This dissertation aimed to broaden our understanding of patient-relevant outcomes after kidney transplantation with a special focus on the patients’ perspectives. By conducting different studies in... Show moreThis dissertation aimed to broaden our understanding of patient-relevant outcomes after kidney transplantation with a special focus on the patients’ perspectives. By conducting different studies in Dutch kidney transplant recipients and by synthesizing existing evidence, we explored several post-transplant patient-relevant outcomes (e.g. health-related quality of life, symptom burden, illness perceptions, medication non-adherence and hospital readmission) and investigated pathways to improve these outcomes, hereby adding to the existing body of knowledge in kidney transplantation. In Chapter 1, we briefly introduced the status quo of patient-relevant outcomes in kidney transplant recipients, discussed potential pathways to improve patient-relevant outcomes in kidney transplant recipients, and provided an overview of the studies presented in this dissertation. In Chapter 7, we provided a summary of our main findings from different studies described in Chapter 2 - 6, the clinical implication of our main findings, and suggestions for future research. Show less
Lugtenberg, R.T.; Groot, S. de; Kaptein, A.A.; Fischer, M.J.; Kranenbarg, E.M.K.; Duijm-de Carpentier, M.; ... ; Dutch Breast Canc Res Grp BOOG 2020
Purpose In the phase II DIRECT study a fasting mimicking diet (FMD) improved the clinical response to neoadjuvant chemotherapy as compared to a regular diet. Quality of Life (QoL) and illness... Show morePurpose In the phase II DIRECT study a fasting mimicking diet (FMD) improved the clinical response to neoadjuvant chemotherapy as compared to a regular diet. Quality of Life (QoL) and illness perceptions regarding the possible side effects of chemotherapy and the FMD were secondary outcomes of the trial. Methods 131 patients with HER2-negative stage II/III breast cancer were recruited, of whom 129 were randomly assigned (1:1) to receive either a fasting mimicking diet (FMD) or their regular diet for 3 days prior to and the day of neoadjuvant chemotherapy. The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires EORTC-QLQ-C30 and EORTC-QLQ-BR23; the Brief Illness Perception Questionnaire (BIPQ) and the Distress Thermometer were used to assess these outcomes at baseline, halfway chemotherapy, before the last cycle of chemotherapy and 6 months after surgery. Results Overall QoL and distress scores declined during treatment in both arms and returned to baseline values 6 months after surgery. However, patients' perceptions differed slightly over time. In particular, patients receiving the FMD were less concerned and had better understanding of the possible adverse effects of their treatment in comparison with patients on a regular diet. Per-protocol analyses yielded better emotional, physical, role, cognitive and social functioning scores as well as lower fatigue, nausea and insomnia symptom scores for patients adherent to the FMD in comparison with non-adherent patients and patients on their regular diet. Conclusions FMD as an adjunct to neoadjuvant chemotherapy appears to improve certain QoL and illness perception domains in patients with HER2-negative breast cancer. Trialregister ClinicalTrials.gov Identifier: NCT02126449. 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
Purpose The diagnosis and treatment of cancer negatively affect patients' physical, functional and psychological wellbeing. Patients' needs for care cannot be addressed unless they are recognized... Show morePurpose The diagnosis and treatment of cancer negatively affect patients' physical, functional and psychological wellbeing. Patients' needs for care cannot be addressed unless they are recognized by healthcare providers (HCPs). The use of quality of life (QoL) assessments with feedback to HCPs might facilitate the identification and discussion of QoL-topics. Methods 113 patients with stage I-IIIB breast cancer treated with chemotherapy were included in this randomized controlled trial. Patients were randomly allocated to receive either usual care, or usual care with an intervention consisting of a QoL-monitor assessing QoL, distress and care needs before every chemotherapy cycle visit. Patients completed questionnaires regarding QoL, illness perceptions, self-efficacy, and satisfaction with communication. From the 2nd visit onwards, patients in the intervention arm and their HCPs received a copy of the QoL overview and results were shown in patients' medical files. Audio-recordings and patients' self-reports were used to investigate effects on communication, patient management and patient-wellbeing. A composite score for communication was calculated by summing the number of QoL-topics discussed during each consultation. Results Use of the QoL-monitor resulted in a higher communication score (0.7 topics increase per visit,p = 0.04), especially regarding the disease-specific and psychosocial issues (p < 0.01). There were no differences in patient management, QoL, illness perceptions or distress. Patients in the experimental arm (n = 60) had higher scores on satisfaction with communication (p < 0.05). Conclusions Use of a QoL-monitor during chemotherapy in patients with early breast cancer might result in a more frequent discussion of QoL-topics, associated with high levels of patients' satisfaction. Show less
Kaptein, A.A.; Meer, P.B. van der; Florijn, B.W.; Hilt, A.D.; Murray, M.; Schalij, M.J. 2020
Background Understanding representations of disease in various art genres provides insights into how patients and health care providers view the diseases. It can also be used to enhance patient... Show moreBackground Understanding representations of disease in various art genres provides insights into how patients and health care providers view the diseases. It can also be used to enhance patient care and stimulate patient self-management. Methods This paper reviews how cardiovascular diseases are represented in novels, films, and paintings: myocardial infarction, aneurysm, hypertension, stroke, heart transplantation, Marfan's disease, congestive heart failure. Various search systems and definitions were used to help identify sources of representations of different cardiovascular diseases. The representations of the different diseases were considered separately. The Common Sense Model was used a theoretical model to outline illness perceptions and self-management in the various identified novels, films, and paintings. Results Myocardial infarction followed by stroke were the most frequently detailed diseases in all three art genres. This reflects their higher prevalence. Representations ranged from biomedical details through to social and psychological consequences of the diseases. Conclusions Artistic representations of cardiovascular diseases reflect cognitions, emotions, and images of prevalent disease. These representations shape views and behaviour of ill and healthy persons regarding heart diseases. As these representations are amenable to change, they deserve further research, which may be instrumental in improving the quality of life of persons struck by cardiovascular diseases. Changing illness perceptions appears to be a method to improve self-management and thereby quality of life in patients with various cardiovascular diseases. Show less
Studies in this thesis were performed in a secondary care cohort of patients with hand osteoarthritis. Several factors were investigated for their association with disease status and disease... Show moreStudies in this thesis were performed in a secondary care cohort of patients with hand osteoarthritis. Several factors were investigated for their association with disease status and disease progression after two years. These factors included comorbidity, illness perceptions and MRI-defined inflammatory features such as bone marrow lesions, synovitis and joint effusion. In the MRI studies we found that these MRI-features have a clinically relevant role for their association with pain (at the same moment and after two years) and progression of radiographic damage after two years. In the second part of this thesis we evaluated the clinimetric properties of two new instruments: self-reported painful joint count and semi-automatic joint space width measurements. Show less
Groeneveld, I.F.; Pas, S.L. van der; Meesters, J.J.L.; Schuurman, J.M.; Meijeren-Pont, W. van; Jagersma, E.; ... ; SCORE-study Grp 2019
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
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
Erp, S.J.H. van; Brakenhoff, L.K.M.P.; Vollmann, M.; Heijde, D. van der; Veenendaal, R.A.; Fidder, H.H.; ... ; Scharloo, M. 2017
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
Conclusions The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also... Show moreConclusions The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients' needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL. Show less
Newsum, E.C.; Helm-van Mil, A.H.M. van der; Kaptein, A.A. 2016
