Objectives:To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation.Methods:Semi-structured... Show moreObjectives:To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation.Methods:Semi-structured interviews were conducted with patients who underwent hematopoietic stem cell transplantation in four university hospitals in the Netherlands. Interviews were transcribed verbatim and thematically analyzed.Results:Nine male and seven female patients were interviewed, median age 47 years (range: 27-68). Patients mentioned their life was severely disrupted before hematopoietic stem cell transplantation and remained unsettled a long time after treatment. Uncertainty because of disease progression, loss of control over health and the sense of time and fear of treatment-related adverse events were common during hospitalization. After hematopoietic stem cell transplantation, patients experienced more physical limitations than they had expected, and recovery took longer and was mentally taxing. Going back to work and finding a new balance in personal relations and social life was complicated. Patients described various strategies to deal with challenges. Family and friends provided essential support, although many experienced a dwindling social circle. Most patients also appreciated peer support. All patients were satisfied with the low threshold for contact with physicians and nurses during hospitalization. However, aftercare focused on medical aspects rather than on psychological well-being and social issues. Moreover, patients would have preferred to be better prepared on what to expect after discharge, and lacked information about self-management, prognosis, optimal recovery, work, sexuality, and family planning.Conclusion:Hematopoietic stem cell transplantation has a major physical and psychological impact on patients with diffuse cutaneous systemic sclerosis. The course of recovery after this intensive therapy was unexpectedly long for some patients and offer of support was far less pro-active post-HSCT compared to pre-HSCT and during HSCT. 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
This thesis gives insight into the patient group that survived an OHCA and gives directions to the development, evaluation and implementation of integrated rehabilitation treated programs, with the... Show moreThis thesis gives insight into the patient group that survived an OHCA and gives directions to the development, evaluation and implementation of integrated rehabilitation treated programs, with the ultimated goal being that all surviors and their spouses regain optimal quality of life and autonomy. Our studies showed that survivors of an OHCA attending a rehabilitation program may experience cognitive problems. A first attempt of identifying cognitive problems with a set of cognitive screening instruments in patients who attend a (cardiac) rehabilitation program appeared to be feasible, although the screening needs further refinement. The finding that cognitive impairments have a negative effect on exercise capacity is important to take into account while further optimising the best rehabilitation program. Finally, the rehabilitation program should not only focus on the patient but also on the spouse or the caregiver. By developing a core outcome set for rehabilitation the effectivenss of cognitive rehabilitation in OHCA patients and their relatives can be better evaluated. Show less
Purpose of review Increased life expectancy in brain tumour patients had led to the need for strategies that preserve and improve cognitive functioning, as many patients suffer from cognitive... Show morePurpose of review Increased life expectancy in brain tumour patients had led to the need for strategies that preserve and improve cognitive functioning, as many patients suffer from cognitive deficits. The tumour itself, as well as antitumor treatment including surgery, radiotherapy and chemotherapy, supportive treatment and individual patient factors are associated with cognitive problems. Here, we review the recent literature on approaches that preserve and improve cognitive functioning, including pharmacological agents and rehabilitation programs. Recent findings Minimizing cognitive dysfunction and improving cognitive functioning in brain tumour patients may be achieved both by preserving cognitive functioning during antitumor treatment, including techniques such as awake brain surgery, less invasive radiation therapies such as stereotactic radiotherapy and proton therapy, as well as with interventions including cognitive rehabilitation programmes. Novel rehabilitation programs including computer-based cognitive rehabilitation therapy (CRT) programmes that can be adjusted to the specific patient needs and can be administered at home are promising. Furthermore, personalized/precision medicine approaches to identify patients who are at risk for cognitive decline may facilitate effective treatment strategies in the future. Cognitive functioning has gained greater awareness in the neuro-oncological community, and methods to preserve and improve cognitive functioning have been explored. Rehabilitation programmes for brain tumour patients should be further developed and referred to in clinical practice. Show less
Brouns, B.; Meesters, J.J.L.; Wentink, M.M.; Kloet, A.J. de; Arwert, H.J.; Boyce, L.W.; ... ; Bodegom-Vos, L. van 2019
Objective: To compare the responsiveness of the Utrecht Scale for Evaluation of Rehabilitation (USER) to the responsiveness of the Barthel Index in stroke patients in an inpatient rehabilitation... Show moreObjective: To compare the responsiveness of the Utrecht Scale for Evaluation of Rehabilitation (USER) to the responsiveness of the Barthel Index in stroke patients in an inpatient rehabilitation facility. Design: Observational study. Setting: Inpatient rehabilitation facility. Subjects: Consecutive stroke patients admitted for clinical rehabilitation. Interventions: Not applicable. Main measures: The USER and the Barthel Index were administered by a nurse at admission and discharge. The Effect Size and Standardized Response Mean (SRM) were calculated as measures of responsiveness. Results: From 198 (78%) of the 254 patients who were included in the study period, both admission and discharge data were available. At admission the mean score of the USER subscale Functional independence was 43.1 (SD = 18.9) and at discharge the mean score was 59.3 (SD = 13.8). The mean score of the Barthel Index at admission was 13.3 (SD = 5.4) and at discharge 18.4 (SD = 3.3). The Effect Size of the USER subscales Mobility, Self-care, Cognitive functioning, Pain, Fatigue and Mood were 0.85, 0.77, 0.48, 0.19, 0.40 and 0.28, respectively, and of the Barthel Index 0.94. The results for the SRM were in the same range. Conclusion: In inpatient rehabilitation after stroke, the USER was less responsive than the Barthel Index. Show less
This article presents an in-depth evaluation of a specialized reintegration initiative within the Dutch Probation Service focused on individuals convicted or suspected of involvement in terrorism.... Show moreThis article presents an in-depth evaluation of a specialized reintegration initiative within the Dutch Probation Service focused on individuals convicted or suspected of involvement in terrorism. Using 72 interviews with program staff as well as several of their clients, the authors assess the initiative’s program theory, its day-to-day implementation and provide a qualified assessment of its overall effectiveness in the 2016 to 2018 period. The results suggest that the initiative is based on a sound understanding of how and why individuals may deradicalize or disengage from terrorism behaviorally, but that it continues to face serious challenges in terms of accurately defining success and systematically gathering objective indicators of its attainment. As terrorism remains a key challenge for societies across the globe, the relevance of these findings extends beyond the Netherlands to all academics, policymakers and practitioners working to design, implement and assess terrorist reintegration programs. Show less
Holst, M. van der; Groot, J.; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2018