The Peanut Allergy Burden Study: Real-world impact of peanut allergy on resource utilization and productivity.

BACKGROUND: There is limited research demonstrating the real-world economic burden of peanut allergy (PA) in the United States. The Peanut Allergy Burden Study (PABS) is a cross-sectional quantitative survey designed to determine the real-world experience of patients and caregivers with PA. The objective of the study was to understand the real-world utilization of PA-related healthcare resources and the impact of PA on productivity. METHODS: Participants completed an online survey to examine the real-world 12-month and lifetime healthcare utilization and past week productivity impact of PA in children (as reported by caregiver proxy), adolescents with PA, adults with PA, and caregivers of children with PA. RESULTS: Healthcare resource use over the past 12 months was frequent for adults (n = 153), adolescents (n = 102), and children (as reported by caregivers) (n = 382) with PA. Patients and caregivers reported the following rates of PA-related utilization in the past 12 months: at least 3 regular allergist appointments (28.8%-39.3%), unscheduled allergist appointments (15.6%-18.3%), general practitioner appointments (16.7%-24.2%), over-the-counter (OTC) medication usage (28.5%-35.7%), and epinephrine autoinjector usage (17.7%-26.2%). Additionally, over half of patients and caregivers reported ≥1 PA-related emergency department (ED)/urgent care visit (57.5%-59.9%), overnight hospital admission (36.3%-47.4%), IV epinephrine use (37.2%-52.3%), or intubation (26.2%-39.8%) over the past 12 months for PA. Healthcare resource use was high among all groups. Regarding productivity, PA significantly impacted household work, schoolwork, and employed work for patients and caregivers. PA-related reactions also impacted school attendance of children with PA. CONCLUSION: Many healthcare resources were utilized by patients with PA and there was a loss of productivity associated with PA for patients and caregivers. New treatments to prevent or lower the risk of PA reactions could potentially help reduce healthcare resource utilization and PA-related productivity loss among patients and their families, particularly for patients for whom avoidance as a treatment strategy has not been reliable.

The Peanut Allergy Burden Study: Impact on the quality of life of patients and caregivers.

BACKGROUND: Peanut allergy (PA) places significant burden on peanut-allergic individuals and their families, yet limited research in the United States has quantitatively examined the impact on peanut-allergic individuals and their families' health-related quality of life (HRQoL). The Peanut Allergy Burden Study (PABS) aimed to quantify the impact of PA on the general and disease-specific HRQoL of children, adolescents, and adults with PA, as well as caregivers of children with PA. METHODS: A cross-sectional survey design was employed to examine the real-world impact of PA in children, adolescents, and adults with PA, and caregivers of children with PA. RESULTS: Of 153 adult patients, 102 adolescents, and 382 caregivers of peanut-allergic children (n = 382), 6.8% and 24.8% of participants indicated being dissatisfied or somewhat dissatisfied, respectively, with current approaches to avoid or prevent PA reactions. Approximately two-thirds of patients and caregivers indicated that PA interferes at least somewhat with daily living. In terms of general HRQoL, adolescents, adult patients, and caregivers indicated that mental/psychosocial health was more problematic than physical health. PA patients and caregivers indicated worse HRQoL in all domains compared to healthy samples, and worse overall HRQoL, psychosocial, emotional, and social functioning than a sample of chronically ill patients. Results from the allergy-specific HRQoL measures showed that adolescents experienced greater impairment in overall HRQoL due to PA and in allergen avoidance and dietary restriction than adults. CONCLUSION: PA negatively affects the general and PA-specific HRQoL of both patients and caregivers. The high emotional and psychosocial burden, in particular, demonstrates significant unmet need for patients with PA and their caregivers. Future work on treatment and preventive options to improve HRQoL for PA patients, particularly adolescents and their families, is needed.

Reasons for refusing parenteral therapy: a qualitative study of patients with pulmonary arterial hypertension.

While parenteral prostacyclin (pPCY) therapy, delivered either subcutaneously or intravenously, is recommended for pulmonary arterial hypertension patients with severe or rapidly developing disease, some patients refuse this treatment. This study aimed to understand, directly from patients with pulmonary arterial hypertension, why pPCY was refused and, in some cases, later accepted. Interviews were conducted with 25 pulmonary arterial hypertension patients who previously refused pPCY therapy (Group A: Refused/Never initiated (n = 9) and Group B: Refused/Initiated (n = 16)). Patients in both groups believed that pPCY could improve their symptoms, slow disease progression, and provide them a greater ability to perform activities. Reasons for refusal included concern over side effects and the perceived limitations of pPCY on daily activities. Group A perceived their decision as a balance between quality of life and prolonging life and most acknowledged they would reconsider pPCY if other treatment options were exhausted. Group B cited they initiated therapy due to a worsening of symptoms, disease progression, to improve quality of life, to be there for their family, or a desire to live. Following initiation, Group B indicated their experience met expectations with reduced symptoms, slowed disease progression, and perception of improved survival; concerns related to pPCY were described as manageable. Given the efficacy of pPCY therapy, clinicians should apply knowledge of these findings in clinical practice. Patients noted improvements to parenteral pump technologies to include smaller size, water resistance, and implantability may increase their acceptance of this modality. Development efforts should focus on technologies that increase the acceptance of pPCY when indicated.

A qualitative study of work and work return in cancer survivors.

Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.