Adhoc Setup of an Online Mental Health Self-Help Program During the COVID-19 Pandemic: Description of the Development and Implementation Processes and Analysis of Its Users’ and Usage Profiles

BackgroundThe COVID-19 pandemic hit Austria in March 2020. This led to a considerable reduction in outpatient psychiatric therapies. People with mental disorders as well as with newly emerging mental health issues found themselves with very limited treatment options. Within only a few days our hospital set up an online mental health self-help program which went online in its first version on the first day of the lockdown in Austria. The process of this development and implementation process alongside with the user’s and usage data for the program are presented here.MethodsA small core team initiated the development of the program on a low-budget basis and using mostly freely available digital resources. The program had to be free of costs for its users and easy to navigate. Each self-help module contains a text description of the topic, a self-rating questionnaire and several psychoeducational 2–5 min videos. These videos explain, e.g., interactions of mental stress and the immune system or the vicious circle of anxiety. Additional videos provide easy to learn techniques like breathing and relaxation exercises.ResultsWe illustrate the implementation of this program following the replicating effective program (REP) model. We provide a detailed description of the implementation process starting from a simple website to a smartphone-based application with registered user area and instantaneous reporting of self-rating questionnaire results to users. The described process could be used as a model for the setup of similar programs in a very short time. As an indicator of acceptance, we report 46,100 unique video views and 3,937 completed questionnaires in the first year of use. The most accessed videos were those on anxiety, relaxation and resilience. Analysis of the sociodemographic user data indicate that they were mostly young (< 45 years; 59.7%), females (77.5%) and previously mentally healthy individuals (74.5%). An example of the collected psychometric questionnaire data over time is given.ConclusionWe show that it is possible to set up an online mental health self-help program ad hoc and without extensive prior planning, which enabled us to dynamically respond to a new situation. We are now planning on keeping the program active for a longer period of time to supplement and expand traditional treatment settings also outside the COVID-19 pandemic

The end-of-life phase of high-grade glioma patients: a systematic review

High-grade gliomas (HGG) are rare and incurable; yet, these neoplasms result in a disproportionate share of cancer morbidity and mortality. Treatment of HGG patients is directed not merely towards prolonging life but also towards quality of life, which becomes the major goal in the end of life (EOL). The latter has received increasing attention over the last decade. We reviewed the literature related to the EOL phase of HGG patients from 1966 up to April 2012. Articles were retrieved from PubMed, Embase, Cinahl, PsycINFO and Cochrane database. We then selected papers for analysis using pre-determined inclusion criteria and subtracted information on the topics of interest. The search yielded 695 articles, of which 17 were classified eligible for analysis according to pre-defined inclusion criteria. Reviewed topics were symptoms and signs, quality of life and quality of dying, caregiver burden, organization and location of palliative care, supportive treatment, and EOL decision making. Nearly all identified studies were observational, with only two non-randomized intervention studies. Symptom burden is high in the EOL phase and affects the quality of life of both patient and carer. Palliative care services are more intensively used compared to other cancer patients. Cognitive deficits increase as the disease progresses, hampering communication and decision making. The EOL phase of HGG is substantially different from other patient groups, and more clinical studies in HGG on supportive medication, advance care planning and decision making are required. The organization of care, development of guidelines and interventions to decrease caregiver burden in the EOL phase are critical as well

Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I–III

Purpose: Being able to function independently in society is an important aspect of quality of life. This ability goes beyond self-care, requires higher order cognitive functioning, and is typically measured with instrumental activities of daily living (IADL) questionnaires. Cognitive deficits are frequently observed in brain tumour patients, however, IADL is almost never assessed because no valid and reliable IADL measure is available for this patient group. Therefore, this measure is currently being developed. Methods: This international multicentre study followed European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group module development guidelines. Three out of four phases are completed: phases (I) generation of items, (II) construction of the item list, and (III) pre-testing. This paper reports the item selection procedures and preliminary psychometric properties of the questionnaire. Brain tumour patients (gliomas and brain metastases), their informal caregivers, and health care professionals (HCPs) were included. Results: Phase I (n = 44 patient-proxy dyads and 26 HCPs) generated 59 relevant and important activities. In phase II, the activities were converted into items. In phase III (n = 85 dyads), the 59 items were pre-tested. Item selection procedures resulted in 32 items. Exploratory factor analysis revealed a preliminary dimensional structure consisting of five scales with acceptable to excellent internal consistency (α = 0.73–0.94) and two single items. For three scales, patients with cognitive impairments had significantly more IADL problems than patients without impairments. Conclusion: A phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample

Do neurocognitive impairments explain the differences between brain tumor patients and their proxies when assessing the patient's IADL?

Background: Neurocognitive impairments are common among brain tumor patients, and may impact patients' awareness of performance in instrumental activities in daily life (IADL). We examined differences between patient-and proxy-reported assessments of the patient's IADL, and whether the level of (dis)agreement is associated with neurocognitive impairments. Methods: Brain tumor patients and their proxies completed the phase 3 version of the EORTC IADL-BN32 questionnaire measuring IADL, and patients completed six neurocognitive measures. Patient-proxy difference scores in IADL were compared between patients who were defined as neurocognitively impaired (≥2 neurocognitive measures ≥2.0 standard deviations below healthy controls) and non-neurocognitively impaired. With multinomial logistic regression analyses we examined if neurocognitive variables were independently associated with patient-proxy disagreement in IADL ratings. Results: Patients (n = 81) did not systematically (P <. 01) rate IADL outcomes different than their proxies. Proxies did report more problems on 19/32 individual items and all five scales. This effect was more apparent in dyads with a neurocognitively impaired patient (n = 37), compared to dyads with non-neurocognitively impaired patients (n = 44). Multinomial logistic regression analyses showed that several neurocognitive variables (e.g., cognitive flexibility and verbal fluency) were independently associated with disagreement between patients and proxies on different scales. Conclusion: Neurocognitive deficits seem to play a role in the discrepancies between brain tumor patients and their proxies assessment of patient's level of IADL. Although replication of our results is needed, our findings suggests that caution is warranted in interpreting self-reported IADL by patients with neurocognitive impairment, and that such self-reports should be supplemented with proxy ratings