Estimation of EuroQol 5-Dimensions health status utility values in hereditary angioedema.

OBJECTIVE: To estimate health status utility (preference) weights for hereditary angioedema (HAE) during an attack and between attacks using data from the Hereditary Angioedema Burden of Illness Study in Europe (HAE-BOIS-Europe) survey. Utility measures quantitatively describe the net impact of a condition on a patient's life; a score of 0.0 reflects death and 1.0 reflects full health. STUDY DESIGN AND METHODS: The HAE-BOIS-Europe was a cross-sectional survey conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE from the patient perspective. Survey items that overlapped conceptually with the EuroQol 5-Dimensions (EQ-5D) domains (pain/discomfort, mobility, self-care, usual activities, and anxiety/depression) were manually crosswalked to the corresponding UK population-based EQ-5D utility weights. EQ-5D utilities were computed for each respondent in the HAE-BOIS-Europe survey for acute attacks and between attacks. RESULTS: Overall, a total of 111 HAE-BOIS-Europe participants completed all selected survey items and thus allowed for computation of EQ-5D-based utilities. The mean utilities for an HAE attack and between attacks were 0.44 and 0.72, respectively. Utilities for an acute attack were dependent on the severity of pain of the last attack (0.61 for no pain or mild pain, 0.47 for moderate pain, and 0.08 for severe pain). There were no significant differences across countries. Mean utilities derived from the study approach compare sensibly with other disease states for both acute attacks and between attacks. CONCLUSION: The impacts of HAE translate into substantial health status disutilities associated with acute attacks as well as between attacks, documenting that the detrimental effects of HAE are meaningful from the patient perspective. Results were consistent across countries with regard to pain severity and in comparison to similar disease states. The results can be used to raise awareness of HAE as a serious disease with wide-ranging personal and social impacts.

Oncologist Support for Consolidated Payments for Cancer Care Management in the United States.

BACKGROUND: The cost of cancer care in the United States continues to rise, with pressure on oncologists to provide high-quality, cost-effective care while maintaining the financial stability of their practice. Existing payment models do not typically reward care coordination or quality of care. In May 2014, the American Society of Clinical Oncology (ASCO) released a payment reform proposal (revised in May 2015) that includes a new payment structure for quality-of-care performance metrics. OBJECTIVES: To assess US oncologists' perspectives on and support for ASCO's payment reform proposal, and to determine use of quality-of-care metrics, factors influencing their perception of value of new cancer drugs, the influence of cost on treatment decisions, and the perceptions of the reimbursement climate in the country. METHODS: Physicians and medical directors specializing in oncology in the United States practicing for at least 2 years and managing at least 20 patients with cancer were randomly invited, from an online physician panel, to participate in an anonymous, cross-sectional, 15-minute online survey conducted between July and November 2014. The survey assessed physicians' level of support for the payment reform, use of quality-of-care metrics, factors influencing their perception of the value of a new cancer drug, the impact of cost on treatment decision-making, and their perceptions of the overall reimbursement climate. Descriptive statistics (chi-square tests and t-tests for discrete and continuous variables, respectively) were used to analyze the data. Logistic regression models were constructed to evaluate the main payment models described in the payment reform proposal. RESULTS: Of the 231 physicians and medical directors who participated in this study, approximately 50% strongly or somewhat supported the proposed payment reform. Stronger support was seen among survey respondents who were male, who rated the overall reimbursement climate as excellent/good, who have a contract with a commercial payer that reimburses for dispensed oral cancer drugs, or who practice in a hospital setting. The use of at least 1 quality-of-care metric was more common among respondents participating in an accountable care organization (ACO) than among those not participating in an ACO (92.6% vs 83.2%, respectively; P = .0380). The most common metric used by the physicians in their practice setting was patient satisfaction scores (60.1%). Accountability for delivering high-quality care was supported by 74.9% of respondents; those who practice in a hospital setting were twice as likely as those in private practice to support accountability for quality of care (81.3% vs 67.6%; odds ratio, 2.1; P = .0176). CONCLUSION: Support for ASCO's payment reform proposal is mixed among oncology physicians and medical directors, underscoring the importance of continuous and broader engagement of practicing physicians around the country via outreach and dialogue on topics that impact their clinical practices, as well as providing education or awareness activities by ASCO to its membership.

Long-term outcomes of colectomy surgery among patients with ulcerative colitis.

The objective of this study was to evaluate long-term health-related quality of life outcomes among patients who had a colectomy within the previous 10 years. A cross-sectional survey was administered to consecutive patients ≥18 years of age with ulcerative colitis who had a colectomy within the last 10 years from centers in Canada, Australia, and the United Kingdom. Data were extracted from medical chart reviews to confirm selected self-reported patient characteristics. Of 351 survey respondents, 49 % were male and the median age was 40 years (interquartile range 30-52). Respondents were diagnosed with UC a median of 9.2 (5.7-15.1) years prior to the survey and first surgery occurred a median of 3.7 (2.1-5.8) years ago. Although most respondents (84 %) reported improved quality of life compared to the status before surgery, 81 % experienced problems in at least one of the following areas: depression, work productivity, restrictions in diet, body image, and sexual function. According to HADS scores, 30 and 17 % of survey respondents experienced anxiety and depression, respectively. Among moderate to severe UC patients pre-colectomy, 27 % of men and 28 % of women reported that their sexual life was worse now than before surgery. The mean EQ-5D utility index score overall was 0.79 (95 % confidence interval 0.77-0.81). Quality of life after colectomy for UC is generally good, but there are persistent quality of life issues that impact multiple domains, including psychological and sexual functioning.

Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study.

OBJECTIVES: To assess the impact of psoriasis on health-related quality of life (HRQoL). METHODS: An ethnographic study of patients with moderate to severe psoriasis was conducted in the US, France, Germany, Italy, Spain, UK, Brazil, and Canada to explore patients' views on treatment and the impact of psoriasis on HRQoL. Anthropologists and ethnographers spent a minimum of 5.5 hours with each consented patient and filmed their behaviors in everyday situations. Visual data and notes were analyzed to identify HRQoL-related themes. RESULTS: The study included 50 adult patients. Patients described their appearance with disgust and self-loathing. Frustration was expressed due to a perceived lack of control of their lives. Prior to initiation of biologic treatment, daily rituals absorbed a good part of their day, including applying creams, checking one's appearance, and covering the body. Due to a lack of cultural discourse and patient's difficulty in articulating the impact of psoriasis, partners and family did not know how to react nor did they realize the full extent of the problem, and many patients experienced perceived social discrimination due to psoriasis, leaving them with feelings of isolation. Patients established on biologic treatment noticed a significant physical improvement and regained confidence, but psychosocial impacts, including social isolation, remained. CONCLUSION: This ethnographic study vividly depicted the unarticulated and emotional impact of psoriasis on the everyday lives of patients and presents an effective method of assessing HRQoL in chronic diseases.

Burden of Illness in Hereditary Angioedema: A Conceptual Model.

The objective of the Hereditary Angioedema Burden of Illness Study in Europe was to assess the real-world experience of hereditary angioedema (HAE) from the patient perspective. Based on open-ended qualitative interviews with 30 patients from Spain, Germany and Denmark, 5 key themes emerged characterizing the impact of HAE on health-related quality of life (HRQoL): (i) unnecessary treatments and procedures, (ii) symptom triggers, (iii) attack impacts, (iv) caregiver impacts, and (v) long-term impacts. Patients for example experience unnecessary medical procedures due to diagnostic delays; anxiety and fear about attacks, and passing HAE to children; reduced work/school productivity; and limited career/educational achievement. Patient caregivers also experience worry and work/activity interruption during the attacks. In conclusion, a conceptual model was developed illustrating the hypothesized relationships among the wide-ranging short- and long-term HRQoL impacts of HAE. These findings can be used to highlight important issues in clinical management, raise awareness of the patients' experience among policymakers and help guide measurement of HRQoL outcomes in future studies in HAE.

Socioeconomic burden of hereditary angioedema: results from the hereditary angioedema burden of illness study in Europe.

BACKGROUND: Hereditary angioedema (HAE) due to C1 inhibitor deficiency is a rare but serious and potentially life-threatening disease marked by spontaneous, recurrent attacks of swelling. The study objective was to characterize direct and indirect resource utilization associated with HAE from the patient perspective in Europe. METHODS: The study was conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE via a cross-sectional survey of HAE patients, including direct and indirect resource utilization during and between attacks for patients and their caregivers over the past 6 months. A regression model examined predictors of medical resource utilization. RESULTS: Overall, 164 patients had an attack in the past 6 months and were included in the analysis. The most significant predictor of medical resource utilization was the severity of the last attack (OR 2.6; p < 0.001). Among patients who sought medical care during the last attack (23%), more than half utilized the emergency department. The last attack prevented patients from their normal activities an average of 4-12 hours. Patient and caregiver absenteeism increased with attack severity and frequency. Among patients who were working or in school (n = 120), 72 provided work/school absenteeism data, resulting in an estimated 20 days missing from work/school on average per year; 51% (n = 84) indicated that HAE has hindered their career/educational advancement. CONCLUSION: HAE poses a considerable burden on patients and their families in terms of direct medical costs and indirect costs related to lost productivity. This burden is substantial at the time of attacks and in between attacks.

The humanistic burden of hereditary angioedema: results from the Burden of Illness Study in Europe.

Hereditary angioedema (HAE) is a rare but potentially life-threatening disease marked by spontaneous, recurrent attacks of swelling. The broad range of consequences of HAE on patients' lives is not well understood. The study objective was to comprehensively characterize the burden of illness and impact of HAE types I and II from the patient perspective. The HAE Burden of Illness Study in Europe was conducted in Spain, Germany, and Denmark to assess the real-world experience of HAE from the patient perspective via a one-time survey, which included items on clinical characteristics and physical and emotional impacts. One hundred eighty-six patients participated; 59% reported having an attack at least once a month, 67% reported moderate-to-severe pain during their last attack, and 74% reported moderate-to-severe swelling. The most common sites of the last attack were the abdomen and extremities; 24% experienced an attack in more than one site. The impact of HAE on daily activities was high during attacks and did not vary significantly by body site affected; patients also reported that HAE impacted their daily activities between attacks. Patients reported substantial anxiety about future attacks, traveling, and passing HAE to their children. Based on Hospital Anxiety and Depression Scale scores, 38 and 14% had clinically meaningful anxiety and depression, respectively. Despite standard of care, HAE patients still have frequent and painful attacks. Patients experience substantial impairment physically and emotionally both during and between attacks. A better understanding of these effects may help in the clinical management of HAE patients.