Partners are often the main caregivers in the care for patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). Providing care during the progressive and fatal disease course of these patients is challenging and many caregivers experience feelings of distress. A blended psychosocial support program based on Acceptance and Commitment Therapy was developed to support partners of patients with ALS and PMA. The aim of this qualitative study is to gather insight into experiences with different components of the support program (program evaluation) and to discover what caregivers gained from following the program (mechanisms of impact). Individual in-depth interviews, about caregivers’ experiences with the support program were conducted with 23 caregivers of ALS/PMA patients enrolled in a randomized controlled trial designed to measure the effectiveness of the blended psychosocial support program. The program, performed under the guidance of a psychologist, consists of psychoeducation, psychological and mindfulness exercises, practical tips and information, and options for peer contact. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. The program evaluation showed that caregivers perceived each component of the program as beneficial but ambivalent reactions were expressed about the mindfulness exercises and peer contact functions. Caregivers expressed the need for a more personalized program with respect to the order and timing of the modules and wanted to continue the support program for a longer time. The main mechanism of impact of the program that caregivers reported was that they became more aware of their own situation. They further indicated that the program helped them to perceive control over the caregiving situation, to accept negative emotions and thoughts, to be there for their partner and feel acknowledged. The blended psychosocial support program for caregivers of patients with ALS/PMA is valued by caregivers for enhancing self-reflection on their challenging situation which stimulated them to make choices in line with their own needs and increased their feeling of control over caregiving. The different components of the program were overall appreciated by caregivers, but the mindfulness and peer support components should be further adapted to the needs of the caregivers. Dutch Trialregister NTR5734 , registered 28 March 2016.

There is an increase in the number of frail elderly patients presenting to the emergency department. Diagnosis and treatment for this patient group is challenging due to multimorbidity, a-typical presentation and polypharmacy and requires specialised knowledge and competencies from healthcare professionals. We aim to explore the needs and preferences regarding emergency care in frail older patients based on their experiences with received care during Emergency Department admission. A qualitative study design was used, and semi-structured interviews were conducted after discharge with twelve frail older patients admitted to emergency departments in the Netherlands. Data collection and analysis were performed iteratively, and data were thematically analysed. The analysis enfolded the following themes; feeling disrupted, expecting to be cared for, suppressing their needs and wanting to be seen. These themes indicated a need for situational awareness by healthcare professionals when taking care of the participants and were influenced by the participants' life experiences. Frail older patients feel disrupted when admitted to the emergency department. Because of this, they expect to be cared for, lessen their own needs and want to be seen as human beings. The impact of the admission is influenced by the extent to which healthcare professionals show situational awareness.

Introduction: Standard-of-care antiretroviral treatment (ART) monitoring in low and middle-income countries consists of annual determination of HIV-RNA viral load with confirmatory viral load testing in case of viral rebound. We evaluated an intensified monitoring strategy of three-monthly viral load testing with additional drug exposure and drug resistance testing in case of viral rebound. Methods: We performed an open-label randomized controlled trial (RCT) at a rural South African healthcare clinic, enrolling adults already receiving or newly initiating first-line ART. During 96 weeks follow-up, intervention participants received three-monthly viral load testing and sequential point-of-care drug exposure testing and DBS-based drug resistance testing in case of rebound above 1000 copies/ml. Control participants received standard-of-care monitoring according to the WHO guidelines. Results: Five hundred one participants were included, of whom 416 (83.0%) were randomized at 24 weeks. Four hundred one participants were available for intention-to-treat analysis. Viral rebound occurred in 9.0% (18/199) of intervention participants and in 11.9% (24/202) of controls (P = 0.445). Time to detection of rebound was 375 days [interquartile range (IQR): 348–515] in intervention participants and 360 days [IQR: 338–464] in controls [hazard ratio: 0.88 (95% confidence interval (95% CI): 0.46–1.66]; P = 0.683]. Duration of viral rebound was 87 days [IQR: 70–110] in intervention participants and 101 days [IQR: 78–213] in controls (P = 0.423). In the control arm, three patients with confirmed failure were switched to second-line ART. In the intervention arm, of three patients with confirmed failure, switch could initially be avoided in two cases. Conclusion: Three-monthly viral load testing did not significantly reduce the duration of viraemia when compared with standard-of-care annual viral load testing, providing randomized trial evidence in support of annual viral load monitoring.

Patients with Testicular Germ Cell Tumors (TGCT) may suffer from several late effects due to their diagnosis or treatment. Follow-up care aims to identify the recurrence of cancer and support patients with TGCT in their experienced late effects. In the Netherlands, the validated Dutch version of the Edmonton Symptom Assessment System, Utrecht Symptom Diary (USD) is used to assess and monitor patient reported symptoms. As a first step to develop a specific USD module for TGCT-patients, it was necessary to identify the prevalence and intensity of late effects in patients with TGCT, covering the physical, social, psychical and existential domains of care. A cross-sectional study was conducted. First, literature was systematically assessed to create a comprehensive list of symptoms. This generated list was reviewed by expert healthcare professionals and the research group. Lastly, a survey was distributed amongst patients with TGCT in follow-up care in the University Medical Center Utrecht (UMCU) outpatient clinic. In total, 65 TGCT-patients completed the survey. All described late effects were recognized by TGCT-patients, with 'fatigue', 'disturbed overall well-being', 'concentration problems' and 'neuropathy', indicated as most prevalent and scored with highest intensity. When prioritizing these late effects, patients assigned 'neuropathy' as most important. This study provided insight into prevalence and intensity of late effects, as indicated by TGCT-patients. In clinical practice, follow-up care can improve by empowering patients to discuss important items in daily life with their health-care professionals.

This qualitative study explored the experiences of patients with bladder cancer with a tailored ‘explanimation’ video (EV) as a supportive information tool used before and during treatment. Using a qualitative approach, data were collected through semi-structured interviews with 12 patients with bladder cancer and thematically analysed. Participants advised future use of the EV, noting it is user friendly and has a fitting difficulty level and clarifying animations. However, some mentioned practical information on ‘life after treatment’ was lacking, and some emphasized the importance of choosing the right moment of delivery. Patients’ experiences were described in four major themes: taking own responsibility, providing opportunity for postponed information supply, easing decision-making processes and gaining a sense of calm. Findings indicate the EV supported patients with bladder cancer in the process of being informed and in decision-making. Future use of the EV in the treatment of patients with bladder cancer is recommended. The use of audiovisual information in patient education is innovative. Tailored audiovisual information in shape of the EV is a step forward in streamlining information processes, meeting individual preferences and highlighting the most important general information for patients with bladder cancer.