Purpose
This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19.
Methods
A systematic literature search was undertaken in ...April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19.
Results
The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function.
Conclusion
This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.
Peanut allergy (PA) currently affects approximately 2% of the general population of Western nations and may be increasing in prevalence. Patients with PA and their families/caregivers bear a ...considerable burden of self‐management to avoid accidental peanut exposure and to administer emergency medication (adrenaline) if needed. Compared with other food allergies, PA is associated with higher rates of accidental exposure, severe reactions and potentially fatal anaphylaxis. Approximately 7%–14% of patients with PA experience accidental peanut exposure annually, and one‐third to one‐half may experience anaphylaxis, although fatalities are rare. These risks impose considerably high healthcare utilization and economic costs for patients with PA and restrictions on daily activities. Measures to accommodate patients with PA are often inadequate, with inconsistent standards for food labelling and inadequate safety policies in public establishments such as restaurants and schools. Children with PA are often bullied, resulting in sadness, humiliation and anxiety. These factors cumulatively contribute to significantly reduced health‐related quality of life for patients with PA and families/caregivers. Such factors also provide essential context for risk/benefit assessments of new PA therapies. This narrative review comprehensively assessed the various factors comprising the burden of PA.
ObjectiveTo assess the burden of urological symptoms in a clinically defined cohort of patients with a clinical diagnosis of PSP and CBS.BackgroundUrinary symptoms are common in PD and atypical ...parkinsonian syndromes. Urological dysfunction significantly impacts quality of life and may portend a worse prognosis. However, studies addressing this in PSP and CBS remain relatively few in number.MethodsA retrospective review of patients attending two atypical parkinsonism clinics in Dublinwith a diagnosis of PSP was performed. The prevalence of irritative and obstructive urological symptoms in the cohort was assessed. The range of therapeutic interventions deployed were reviewed.Results30 patients (14 female, 16 male, 20 PSP, 10 CBS) were included in the study. Urological symptoms were reported in 66.6% of patients. The most commonly reported symptom was nocturia (n=11, 37%). Irritative symptoms predominated (n=17, 57%) over obstructive symptoms (n=4, 13%). Mirabegron was the most commonly used medication (n=4, 13%). 2 patients required long term catheters.ConclusionsUrological symptoms are common in tauopathies and our experience reflects the high prevalence found in some previous studies. Developing effective strategies for investigating and treating urological dysfunction in PSP and CBS has the potential to improve quality of life for patients.
BackgroundNeurological conditions and neurodegenerative diseases can negatively impact the well-be- ing and quality of life of patients and informal caregivers. The use of digital health technology ...to promote self-management and the delivery of post-diagnostic care may help improve this.AimIdentify digital tools used in self-management and care delivery, to investigate how they support users, and highlight pertinent clinical and psychosocial outcomes.MethodsSix databases were searched using free text and equivalent database-controlled vocabulary terms.ResultsFor neurological conditions, 27 articles were identified, reporting 17 self-management digital tools aimed at patients. These promoted self-management through five main functions: knowledge and under- standing, behaviour modification, self-management support, facilitating communication, and recording condition characteristics. Salient clinical outcomes included improvements in self-management, self-ef- ficacy, coping, depression, and fatigue.For neurodegenerative diseases, 26 articles were identified, reporting 21 digital tools focused mainly on caregivers. These promoted self-management and support through five main functions: psychoeduca- tion and self-help, competency and ability, sustaining and promoting well-being, behaviour change and motivation, and facilitating contact and communication with healthcare professionals and other users.ConclusionThere is limited-to-mixed evidence to support a positive influence of digital tools on mental health, burden, quality of life, and caregiver perceived ability. Greater understanding is needed around their accessibility, uptake, sustained use, and integration within care pathways and routine clinical care.
Background: Research has been done on genetic causes of obesity, and work has continued on therapies that may help treat some of these genetic mutations. One specific treatment, setmelanotide, known ...by the trade name Imcivree, approved for use in 2022 for Bardet-Biedl Syndrome (BBS) has shown marked improvement in weight and quality of life in patients with hypothalamic dysfunction as seen in patients with BBS. With the marked improvement in quality of life and weight reduction in BBS patients. This study evaluated the rate of patients who tolerate therapy with setmelanotide as compared to those who discontinued therapy. Methods: A chart review was conducted to evaluate the number of patients started on setmelanotide and the number of patients who discontinued treatment, along with the reasons for discontinuation of treatment. All patients in this study were identified as patients with Bardet-Biedl Syndrome diagnosed by clinical presentation with supportive genetic testing results. Results: Out of 75 patients who were started on setmelanotide, 12 discontinued treatment for various reasons, representing 16% of the study population, similar to Saxenda discontinuation rate of 15.2%. All 12 patients in this study had various degrees of side effects that caused them to discontinue use of the medication, with the most common being hyperpigmentation and severe nausea and vomiting. Other causes for discontinuation were mood disturbance, body aches, anaphylacticlike reaction, need for daily injection, and injection site reaction. Conclusions: Setmelanotide's real world tolerability for patients with genetic causes of obesity matches existing treatment options and warrants further monitoring regarding patient tolerance of the side effects of treatment.
The treatment of head and neck cancers, especially that of the larynx, causes late effects and can affect negatively the patient's quality of life.
For locally advanced laryngeal cancer, clinical ...response outcomes such as locoregional control and survival were similar in patients treated with concomittent chemoradiotherapy and those treated with total laryngectomy (TL).
The aim of this work was to compare the quality of life of patients treated by concomitant radio-chemotherapy with those treated by total laryngectomy (TL) followed by adjuvant radiotherapy.
Thirty-six patients treated for locally advanced laryngeal cancer (stage III or IV) were included in this study. These patients were treated with concomitant chemoradiotherapy or TL with adjuvant radiotherapy. Patients had to be without evidence of recurrence and have completed treatment at least 3 months before study inclusion.
The European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire (QLQ-C30) and Head and Neck (H&N35) questionnaires were used for the assessment of quality of life.
An interrogation took place during the post-therapeutic monitoring consultation during the period from January 1, 2023 to August 1, 2023.
On the baseline questionnaire (QLQ-C30), there was a difference in the overall quality of life score between the 2 groups, with a higher score in the group treated with concomitant chemoradiotherapy meaning a better quality of life in this group.
Analysis of functional subscales revealed a tendency for patients in the surgery followed by radiotherapy group to experience greater difficulty in social functioning compared to the chemoradiotherapy group.
On the QLQ-H&N35, surgical patients reported significantly greater difficulties with sensory disturbances (smell and taste), analgesic use, and cough. On the other hand, patients treated with chemoradiotherapy reported significantly more problems with dry mouth and ageusia.
We found better overall quality of life scores in patients undergoing concomitant chemoradiotherapy for laryngeal preservation compared to patients treated with LT and postoperative radiotherapy for advanced laryngeal cancer. This appears to be primarily caused by better physical health, functioning, and social contact scores and fewer problems with pain, speech, senses, and sleep disturbances in this group.
The COVID-19 pandemic has far-reaching implications for HRQoL into the future. This disease affects many systems of the body, as well as having an impact on the psychological status of those with the ...condition, their families, and health care workers. Given the breadth of conditions that may result from COVID-19, it is critical that quality of life researchers begin preparing to address the many factors that may impact HRQoL for many people worldwide.
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