BackgroundWe evaluated the opinions of parents in The Netherlands concerning treatment of their children with growth hormone, and examined beliefs and perceptions about treatment and quality of health care communication and support.MethodsAn Internet survey was completed by 69 parents who had children prescribed growth hormone and were part of the Patient Intelligence Panel. Acceptance of the diagnosis and treatment was investigated with reference to four topics, ie, search and quality of information, involvement in decision-making process, operational aspects, and emotional problems and support.ResultsAmong the parents surveyed, 48% reported a lack of freedom to choose the type of growth hormone device that best suited their needs, 92% believed that their children (and they themselves) would benefit if the children self-administered growth hormone, and 65% believed training to support self-administration would be helpful. According to 79%, the availability of support from another parent with experience of treating their own child with growth hormone, alongside their doctor, would be valuable. Thirty-seven percent of the parents indicated that their children felt anxious about administration of growth hormone, and 83% of parents would appreciate psychological support to overcome their anxiety. An increase in reluctance to receive treatment with growth hormone was observed by 40% of parents after the children reached puberty, and 57% of these parents would appreciate psychological support to overcome this reluctance.ConclusionUnderstanding how growth hormone treatments and their implications are perceived by parents is a first step towards addressing quality of growth hormone treatment, which may be instrumental in improving adherence. The data show a need for support and involvement of parents in the process of choosing a growth hormone device. This decision-making process may be instrumental in improving acceptance and diminishing emotional problems for children using growth hormone.
This paper examines the interaction of patients within the context of efficiency in the pharmaceutical environment. Measurements of quality standards in healthcare are reviewed with an emphasis on the question of whether 'patient intelligence' can improve quality standards in healthcare. Something given particular consideration is the ethical point of view versus the business point of view, in relation to the integration of patients into the decision-making process of a healthcare organization. The paper focuses on the formal and informal reasons for involvement of patients in corporate and/or market access strategies for healthcare organizations.
The purpose of the study was to identify the extent and severity of treatmentrelated side effects experienced by patients with depression. The study was designed to identify the extent of the different antidepressant side effects to gain an understanding of their impact on the lives of patients suffering from depression. Methods: A total of 303 patients from The Netherlands with physician-diagnosed depression completed an online questionnaire. All participating patients were receiving antidepressants and were members of the Patient Intelligence Panel (PIP). Participants answered questions about their antidepressant medication, degree of personal research into antidepressant medication, and about any side effects they had experienced as a result of their current antidepressant therapy, the severity of any such side effects, and the impact on their daily lives. Results: Over two-thirds (69%) of patients were receiving antidepressant therapy for the first time. Forty-two percent (42%) of patients felt it took 2-6 weeks of antidepressant therapy before their depressive mood improved. More than half of participating patients (60%) had experienced side effects from their antidepressant therapy, the most common being 'somnolence, drowsiness, or fatigue' (14%). Of the 60% of patients who had experienced side effects, 46% admitted to absenteeism as a consequence. Conclusion: Central to the effective management of depression is an understanding of the effects of antidepressant therapy on patients' lives. Treatment-related side effects, and their potential influence on treatment discontinuation, need to be recognized and assessed on an individual patient basis to optimize management and minimize potential relapse.
Cost-effectiveness data from a state of the art health economic analysis should permit reliable, reproducible, and verifiable insights into the effectiveness of a drug and the possible savings that might be achieved relative to other drugs and/or treatments. The data for a model may come from a variety of sources and are subject to varying degrees of uncertainty. The reliability of the estimates depends on the choice of the data sources. Data sources for the variables being used in a model may be clinical trials, databases, medical records, and Delphi panels. A limitation of these data sources is that they often lack the input from the patient's perspective. Patient Intelligence applications can provide data to be used in health economic models for any given situation regarding treatment of persons suffering from a disorder, disease, or complaint. The objective of this paper to explore the opportunity of integrating patient data generated by Patient Intelligence applications as an alternative data source for a Delphi panel and databases in health economic models.
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