Psychotropic drugs (PD) are often prescribed to nursing home residents with Korsakoff syndrome (KS). It is unknown whether these drugs are prescribed correctly or whether they are prescribed off-label, for example, to treat behavioral symptoms. To get more insight into PD prescriptions, a descriptive study was performed. The type, category and indications of PD prescriptions of 285 participants were analyzed using medication charts and questionnaires. Behavioral symptoms were investigated with the Neuropsychiatric Inventory-Questionnaire. The results showed that atypical antipsychotics (57.1%) were prescribed more frequently than typical antipsychotics (49.3%). Of the antidepressants, selective serotonin/norepinephrine reuptake inhibitors (63.1%) were most frequently prescribed, followed by tricyclic antidepressants (23.4%). Of the benzodiazepines, anxiolytics (85.7%) were more prescribed than hypnotics (24.5%). Besides psychiatric disorders, PD were also prescribed to treat behavioral symptoms varying from 29.9% (antipsycho-tics) to 26.3% (benzodiazepines) and 9.3% (antidepressants). Furthermore, prescriptions were high if behavioral symptoms were present. To conclude, PD are often prescribed to residents with KS for an unapproved indication, namely behavioral symptoms. Additional research is needed to obtain further insight into the current prescribing culture and the effectiveness of PD. The insights thus obtained may, ultimately, contribute to the appropriate prescription of PD for people with KS.
Care for patients with Huntington's disease (HD) in long-term care facilities (LTCFs) is complex and practice-based, consisting of interventions developed through years of experience. Little is known about the functional status, quality of life of these patients and end-of-life care, particularly advance care planning and patients' perceptions of end-of-life.
Aims
Gain insight in motor, psychiatric, and cognitive symptoms, functional ability and quality of life of HD patients living in specialized LTCFs. Gain insight in perceptions of HD patients concerning their future and end-of-life, and whether these perceptions change over time. Gain insight in views of elderly care physicians on advance care planning and palliative care for HD patients.
Methods
This study consists of two parts: 1) a cross-sectional, descriptive study 2) a qualitative study.
Results/outcome
Data on the functional status and quality of life are collected in the period September 2017 – May 2019. We aim to include 250 HD patients living in 9 LTCFs in the Netherlands. The data will be obtained using observation scales and questionnaires. Data on end-of-life care are obtained by conducting multiple in-depth interviews every 6 months for the period of 2 to 2,5 years with 10–15 HD patients, and one in-depth interviews with elderly care physicians. Results are expected in 2021.
Conclusions
This study will provide valuable information on the functional status, quality of life and end-of-life care of HD patients living in LTCFs. Results may provide an evidence base to develop specific guidelines for care of institutionalized HD patients.
Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of the disease demands multiple disciplines for treatment and care of patient and family. These health care providers need inter- and multidisciplinary collaboration to persevere and be efficacious in this devastating disease trajectory. Discussion The position paper outlines current knowledge and experience alongside the experience and consensus of a recognised group of HD multidisciplinary experts. Additionally the patient’s voice is clear and calls for health care providers with a holistic view on patient and family. Building long-term trust is a cornerstone of the network around the patient. This paper describes a managed care network comprising all the needed professionals and services. In the health care system, the role of a central coordinator or case manager is of key importance but lacks an appropriate guideline. Other disciplines currently without guidelines are general practitioners, nurses, psychologists, and social workers. Guidelines for neurologists, psychiatrists, geneticists, occupational therapists, speech and language therapists, physiotherapists, dieticians, and dentists are being discussed. Apart from all these profession-specific guidelines, distinctive inter- and multidisciplinary collaboration requirements must be met. Conclusions and recommendations The complex nature of Huntington's disease demands multidisciplinary treatment and care endorsed by international regulations and the lay association. Available guidelines as reviewed in this paper should be used, made available by a central body, and updated every 3–5 years. Time needs to be invested in developing missing guidelines but the lack of this ‘proof’ should not prevent the ‘doing’ of good care.
PDT is being used to treat small localized cancer or as an adjuvant to debulking surgery for more advanced disease. Clinical protocols for PDT are based on the assumption that optimum intervals between photosensitizer administration and illumination are at times of maximum differential between drug retention in tumor and surrounding normal tissue. Tumor destructing can, however, occur either by direct cell killing or by vascular mediated damage. The aim of this study was to investigate the relationship between plasma and tumor photosensitizer levels and PDT effect for the RIF1 murine tumor and the H-MESO1 xenograft tumor. mTHPC plasma levels decreased rapidly according to a biexponential fit. The tumor drug levels, however increased from 5 minutes to 6 hours after injection and remained high for at least 48 hours. Maximum tumor PDT response was seen at 1 to 3 hour drug-light intervals with very little effect for drug-light intervals > 24 hours. No correlation was found between tumor mthpc levels and tumor response, whereas plasma mTHPC levels and PDT correlated significantly. These studies support the hypothesis that vascular mediated damage is more important than direct tumor cell toxicity and that it is drug exposure of endothelial cells in vessels feeding the tumor which determines PDT response.
Abstract Objectives To evaluate the effect of tailored interventions on the appropriateness of decisions to prescribe or withhold antibiotics, antibiotic use and guideline-adherent antibiotic selection in nursing homes (NHs). Methods We conducted a quasi-experimental study in 10 NHs in the Netherlands. A participatory action research (PAR) approach was applied, with local stakeholders in charge of selecting tailored interventions based on opportunities for improved antibiotic prescribing that they derived from provided baseline data. An algorithm was used to evaluate the appropriateness of prescribing decisions, based on infections recorded by physicians. Effects of the interventions on the appropriateness of prescribing decisions were analysed with a multilevel logistic regression model. Pharmacy data were used to calculate differences in antibiotic use and recorded infections were used to calculate differences in guideline-adherent antibiotic selection. Results The appropriateness of 1059 prescribing decisions was assessed. Adjusting for pre-test differences in the proportion of appropriate prescribing decisions (intervention, 82%; control, 70%), post-test appropriateness did not differ between groups (crude: P = 0.26; adjusted for covariates: P = 0.35). We observed more appropriate prescribing decisions at the start of data collection and before receiving feedback on prescribing behaviour. No changes in antibiotic use or guideline-adherent antibiotic selection were observed in intervention NHs. Conclusions The PAR approach, or the way PAR was applied in the study, was not effective in improving antibiotic prescribing behaviour. The study findings suggest that drawing prescribers' attention to prescribing behaviour and monitoring activities, and increasing use of diagnostic resources may be promising interventions to improve antibiotic prescribing in NHs.
Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). However, little is known about ACP in HD.
Aim
To describe the experiences of elderly care physicians (ECPs) with ACP in HD patients.
Methods
A qualitative interview study with nine elderly care physicians working in a HD-specialized nursing home in the Netherlands.
Results
Two phases could be identified in the process of ACP. In the first phase, when the fearful future is still the future, the ECP asks about the patient's wishes for the future in an accommodating way. In the second phase, when the feared future is coming closer, future medical treatment and care becomes less hypothetical, and agreement has to be reached from ACP-conversations and previously formulated wishes. In this phase the ECP takes a more guiding role, and consequently encounters more difficulties, such as trying to reach agreement and maintaining a positive patient/family-physician relationship while dealing with resistance from patient or family. For most participants, talking about wishes concerning euthanasia appeared to be a standard part of ACP.
Conclusions
ACP in HD can be classified into two phases, which differ in ECP's approach and complexity experienced by the ECP.
