Perceptions among women with breast cancer about the relative importance of different potential chemotherapy side effects is not well understood. A survey was performed by women receiving ...chemotherapy for breast cancer. Grade I/II (mild to moderate) and III/IV (moderate to severe) descriptions of nine common chemotherapy side effects were assigned preference weights using the standard gamble technique. For each hypothetical side effect, patients could choose to stay in the respective side effect state or take a gamble between full health (probability
p
) or being dead (1 −
p
). For each side effect,
p
was varied until the patient was indifferent between these options. The survey also included questions about the importance of survival, slowing cancer growth, and quality of life. This analysis included 69 patients; mean age 54 years (range 35–84), representing all cancer stages. Standard gamble preferences were lowest (i.e., least preferred) for grade III/IV nausea/vomiting (0.621), indicating that patients would, on average, risk a 38 % chance of being dead to avoid having grade III/IV nausea/vomiting for the rest of their lives. The next least preferred side effects were grade III/IV diarrhea (0.677) and grade III/IV sensory neuropathy (0.694). Survival appeared more important than slowing cancer growth and maintaining quality of life across cancer stages. Nevertheless, patients with advanced disease placed less importance on survival (
p
= 0.09) and higher importance on quality of life (
p
= 0.05). These standard gamble utilities provide unique insights into chemotherapy toxicities from the patient perspective. Differences in the relative importance of overall survival and quality of life with treatment existed between patients with different stages of disease. These studies should be expanded as the data may also be used to calculate quality-adjusted life expectancy in cost-effectiveness evaluations of breast cancer chemotherapies.
No studies measure preference-based utilities in advanced melanoma that capture both intended clinical response and unintended toxicities associated with treatment.
Using standard gamble, utilities ...were elicited from 140 respondents in the United Kingdom and Australia for 13 health states.
Preferences decreased with reduced treatment responsiveness and with increasing toxicity.
These general population utilities can be incorporated into treatment-specific cost-effectiveness evaluations.
ABSTRACT
Objective: Ibandronate, a potent nitrogen-containing bisphosphonate, can be administered with extended interval dosing. Patient preferences were assessed for once-monthly versus once-weekly ...bisphosphonate treatment using a previously developed, open-label, cross-over trial design.
Research design and methods: This was a 6‐month, prospective, randomized, open-label, multi-center study with a two-period and two-sequence cross-over treatment design. After screening, eligible patients (postmenopausal women with osteoporosis) were randomized to once-monthly ibandronate 150 mg followed by once-weekly alendronate 70 mg for a total of 6 months (Sequence A) or once-weekly alendronate followed by once-monthly ibandronate for a total of 6 months (Sequence B). The primary objective was to evaluate patient-reported preference for either the once-monthly ibandronate regimen or the once-weekly alendronate regimen based on responses to a preference questionnaire.
Results: A total of 342 patients were enrolled into this study (Sequence A, 170; Sequence B, 172). In the primary analysis of patient preference, 71.4% of women selected once-monthly ibandronate and 28.6% of women selected once-weekly alendronate. Overall, 66.1% preferred the once-monthly ibandronate regimen to the once-weekly alendronate regimen (26.5%) and 7.4% of participants stated no preference for either regimen. The preference rate for once-monthly ibandronate was statistically significant ( p < 0.0001). ‘Ease of following a treatment regimen for a long time’ was the most common reason given for patient preference for both the once-monthly ibandronate (61%, 169/276) and once-weekly alendronate (25%, 70/276) regimens. Additionally, 17% (47/276) of patients who preferred once-monthly ibandronate chose ‘it is easier to tolerate side effects’ as did 4.3% (12/276) of patients who preferred alendronate. Significantly more women found once-monthly ibandronate to be more convenient ( p < 0.0001).
Conclusions: Significantly more women with postmenopausal osteoporosis preferred once-monthly ibandronate therapy to once-weekly alendronate therapy, and found the once-monthly regimen to be more convenient. Ease of following a treatment regimen for a long time was the most common reason given for the patients’ preferences.
Objective
The objective was to develop a conceptual model illustrating the relationships between the physician-patient relationship and patient outcomes, including health status and regimen ...satisfaction, in systemic lupus erythematosus (SLE).
Methods
This was a cross-sectional survey of a geographically diverse sample of adults with SLE in the United States. Patients completed a Web-based survey that focused on physician interactions, clinical management, and patient outcomes, including patient perception of treatment regimen and health status. All survey variables related to physician interactions and patient perceptions of their health and satisfaction were evaluated for incorporation into a patient-centered model using cluster analysis. Structural equation modeling (SEM) was conducted to assess the inter-relationships observed among the variables to inform the development of a conceptual model of SLE patient-centered care.
Results
A total of 302 SLE patients completed the survey. The majority of patients were female (94.3%) with a mean age of 46 years. The cluster analysis resulted in six main factors: 1) physician interactions, 2) current health and hope, 3) satisfaction with treatment, 4) bedside manner, 5) discussion of lupus impacts during physician visits, and 6) steroid treatment. The significant relationships among the factors showed that positive physician interactions, such as including the patient in treatment decisions, were associated with higher satisfaction with treatment regimen and patients feeling that SLE was well controlled, a more favorable perception of current health, and being more hopeful about future health. Among the components of physician interactions, setting goals with patients is particularly important, as this was significantly associated with the patient being more hopeful about future health. Being steroid free was significantly related to higher treatment satisfaction.
Conclusion
The study findings informed a conceptual model of SLE patient-centered care that may be used to create more targeted education programs in the management of SLE, with the goal to improve patient outcomes.
Background: For individuals managing diabetes, the administration of glucagon for severe hypoglycemia can be lifesaving, yet, until recently, there were no easy-to-use devices for these stressful ...emergencies. New products have emerged to meet this need, including nasal glucagon (NG) and auto-injector glucagon (AI). This study evaluated the psychometric properties of a new measure, the Glucagon Device Attitudes Questionnaire (GDAQ), in assessing attitudes toward NG and AI from the perspectives of persons with diabetes on insulin (PWDs), caregivers, and acquaintances. Methods: Developed based on qualitative research, the GDAQ consists of 38 rating items for each device and 16 direct-elicitation of attitudes of device relative to each other. It was administered to participants via a cross-sectional online survey. Twenty-six rating items were included in principal component analysis and confirmatory factor analysis. Items comprising each factor were averaged to form scales. Additionally, 12 direct elicitation items were averaged to form an overall "Attitudes" scale. Reliability and validity analyses were conducted. Descriptive statistics were provided for the rating items not included in the factor analysis. Results: A total of 405 PWDs, 313 caregivers, and 305 acquaintances participated. Three factors were identified: "Prepared and Protected" (7 items), "Hesitation" (12 items), and "Device Perceptions by Others" (7 items); factor loadings ranged from 0.13 to 0.92, 0.50 to 0.89, and 0.16 to 0.92, respectively. Cronbach's alpha for the four scales ranged from 0.76 to 0.96. Correlations of the scales with their global item ranged from 0.30 to 0.90. The items outside of the factor analysis showed good distribution in responses and differentiation between the two devices. Discussion: This study supports the validity and reliability of the GDAQ, which successfully conceptualizes attitudes towards devices for administering glucagon among different respondent groups. Use of the GDAQ can help guide the development and testing of new glucagon drug/device combinations. Keywords: diabetes, severe hypoglycemic events, glucagon delivery device, patient attitudes
To evaluate the burden of illness of narcolepsy and assess the health-related quality-of-life (HQL) effects of oral modafinil, a wake-promoting therapy for excessive daytime sleepiness associated ...with narcolepsy.
Subjects with narcolepsy enrolled in a nine-week, placebo-controlled, double-blind study and were randomized to placebo, modafinil 200 mg, or modafinil 400 mg. After the study, consenting subjects received modafinil in a 40-week open-label extension. A self-administered HQL questionnaire consisting of the 36-Item Short Form Health Survey (SF-36) and supplemental narcolepsy-specific scales was given to subjects at baseline, study endpoint, and several open-label timepoints.
481 subjects completed a baseline and double-blind endpoint HQL assessment. Compared to population norms, baseline HQL scores reflected substantial burden in vitality, social functioning, and performing usual activities. At study endpoint, subjects in the 400 mg modafinil group had significantly higher scores than placebo for 10 of the 17 HQL scales. The 400 mg modafinil group had more energy, fewer difficulties performing usual activities, fewer interferences with social activities, improved psychological well-being and higher productivity, attention and self-esteem compared to placebo subjects (p<.05). The positive treatment effects were sustained over the open-label extension.
Modafinil significantly improves health-related quality of life in narcolepsy.
Research on HIV medication adherence has relied mainly on quantitative methods. The objective of this study was to explore factors associated with adherence from the HIV-infected patient's ...perspective. Six focus groups were convened with treatment-experienced HIV-positive individuals. The discussions focused on issues that make it easy or difficult to adhere to HIV regimens. Thirty-five patients participated in the focus groups, which were conducted in Washington, D.C., and Los Angeles. The mean age was 48; 66% were male; 63% were black; and 40% contracted HIV through heterosexual contact. Six major themes emerged from the data that influenced adherence to medication: regimen complexity/medication features (including number of pills), lifestyle fit, emotional impacts (including worry, anger, stress and anxiety), side effects, medication effectiveness, and communication (including information from friends, physicians, and published sources). The data informed a conceptual framework, illustrating the possible interactions among these themes that can potentially be used by clinicians when discussing HIV treatment options with patients. This is potentially one of the first focus group studies concentrating on HIV medication adherence. The findings highlight specific factors that should be considered when trying to improve adherence and may be helpful in clinical decision-making.