This article discusses three steps involved in moving us toward a theory of individual quality of life: developing a conceptual model, integrating theory components, and applying and evaluating the ...theory. Each of the proposed steps is guided by established standards regarding theory development and use. The article concludes with a discussion of criteria that can be used to evaluate the theory and the contribution that a theory of individual quality of life would make to the field of disability.
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.
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.
Aims
Heart failure (HF) leads to repeat hospitalisations and reduces the duration and quality of life. Pulmonary artery pressure (PAP)‐guided HF management using the CardioMEMS™ HF system was shown ...to be safe and reduce HF hospitalisation (HFH) rates in New York Heart Association (NYHA) class III patients. However, these findings have not been replicated in health systems outside the United States. Therefore, the CardioMEMS European Monitoring Study for Heart Failure (MEMS‐HF) evaluated the safety, feasibility, and performance of this device in Germany, The Netherlands, and Ireland.
Methods and results
A total of 234 NYHA class III patients (68 ± 11 years, 22% female, ≥1 HFH in the preceding year) from 31 centres were implanted with a CardioMEMS sensor and underwent PAP‐guided HF management. One‐year rates of freedom from device‐ or system‐related complications and from sensor failure (co‐primary outcomes) were 98.3% 95% confidence interval (CI) 95.8–100.0 and 99.6% (95% CI 97.6–100.0), respectively. Survival rate was 86.2%. For the 12 months post‐ vs. pre‐implant, HFHs decreased by 62% (0.60 vs. 1.55 events/patient‐year; hazard ratio 0.38, 95% CI 0.31–0.48; P < 0.0001). After 12 months, mean PAP decreased by 5.1 ± 7.4 mmHg, Kansas City Cardiomyopathy Questionnaire (KCCQ) overall/clinical summary scores increased from 47.0 ± 24.0/51.2 ± 24.8 to 60.5 ± 24.3/62.4 ± 24.1 (P < 0.0001), and the 9‐item Patient Health Questionnaire sum score improved from 8.7 ± 5.9 to 6.3 ± 5.1 (P < 0.0001).
Conclusion
Haemodynamic‐guided HF management proved feasible and safe in the health systems of Germany, The Netherlands, and Ireland. Physician‐directed treatment modifications based on remotely obtained PAP values were associated with fewer HFH, sustainable PAP decreases, marked KCCQ improvements, and remission of depressive symptoms.
Objective
The association between diet quality, dietary behavior and health-related quality of life has been mostly examined in children and adolescents with specific chronic diseases. No systematic ...review has synthesized the influence of diet quality and dietary behavior on health-related quality of life in the general population of children and adolescents. The purpose of this study was to systematically review the primary studies that evaluated the association between diet quality, dietary behavior and health-related quality of life in the general population of children and adolescents and to synthesize the findings for the association.
Methods
A computer search in the databases of MEDLINE, EMBASE and PSYCINFO was performed to retrieve English language studies that were published from 1946 up to April 8, 2018. We also screened the PubMed-related articles and the reference lists of the existing relevant literature to identify other eligible studies. We synthesized the association between diet quality, dietary behavior and health-related quality of life using both a qualitative method and meta-analysis. We reported the review following up the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guideline.
Results
Seventeen studies were included in the synthesis including twelve cross-sectional studies and five longitudinal studies. We found that diet quality and dietary behavior were associated with health-related quality of life in children and adolescents. The positive effect of healthy diets on health-related quality of life was observed for multiple domains of health-related quality of life, including physical, school and emotional functioning, and psychosocial quality of life. We observed a dose–response relationship between the diet exposure and health-related quality of life, where an unhealthy dietary behavior or lower diet quality was associated with decreased health-related quality of life among children and adolescents.
Conclusion
The findings of the systematic review suggest the importance of promoting healthy diets and nutrition for good health-related quality of life among children and adolescents. Future research is needed to strengthen the evidence for prospective relationships and for the dose–response effect between diet quality, dietary behavior and health-related quality of life among children and adolescents.
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