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Information ranks highest: Perception of health care services by female adolescents with MRKHS as an orphan disease
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Veröffentlicht: | 22. September 2015 |
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Background: Access to highly specialized health care services and proper support to meet the patient’s specific needs are critical for health outcome, especially during age-related transitions within the health care system such as with adolescents entering adult medicine. Being affected by an orphan disease complicates the situation in several important respects. Long distances to dedicated institutions and scarcity of knowledge, even among medical doctors, may present major obstacles for proper access to health care services and health chances. The BMBF-funded research project TransCareO (funding code 01GY1125) examines in a mixed-method design health care provisional deficits, preferences, and barriers as perceived by female adolescents affected by the Mayer-Rokitansky-Kuester-Hauser syndrome (MRKHS), a rare (orphan) genital malformationi.
Methods: In total, 87 persons involved in the process of health care and support for female adolescents affected by MRKHS, attended a communicative validation workshop. They were asked to rate elements (items) of care related to the disease using a 7-point Likert scale (1, strongly disagree; 7, strongly agree) as to 1) the elements’ potential importance (i.e., health care expected to be “best practice”) and 2) the presently experienced situation of care. A gap score between the two was computed highlighting fields of action. The items were obtained from interviews run previously with adolescents and women affected by MRKHS. The items were arranged into ten separate questionnaires representing different domains of care and support (e.g., online-portal, patient participation). Within each domain, several elements addressed various aspects of “information” and “access”. Regarding the collective of affected females (attending persons, n=35; participation in rating, n=19) these elements were evaluated separately.
Results: The highest priority scores (7 points for at least top ten items) occurred for the domains “Online-Portal”, “Patient participation”, and “Target group specific information”, characterizing them as extremely important for the perception as best practice. The highest gap scores, ranging from 6 to 4 points for top ten items, were obtained regarding domains “Target group specific information” (reflecting perceived lack of sufficient disease-related information for affected persons as well as, for example, medical experts and health insurance companies), “Online-Portal” (with only a few information available on specialist clinics and specialized medical doctors), and regarding notably insufficient support offers, e.g., in school and occupational settings. Conversely, the lowest gap scores were found for group offers for the MRKHS patients (domain “Transition programs”) and MRKHS self-help days (“Patient participation”), suggesting satisfaction or rather good solutions in place in healthcare practice. Low gap scores were also found for networks for parents (“Needs and offers for parents and family members“) paralleled by lower priority ratings, suggesting their minor importance from the point of view of the affected adolescents.
Discussion: The importance given to disease-related information indicates that informational deficits are perceived by the affected patient group as barriers. Informational deficits hinder proper access to health care, especially in an orphan disease. Access to health-related information plays a role for all persons seeking help and care. However, the overwhelmingly high scores attributed to these elements in the context of an orphan disease, reveal that here improved information policies are crucial, demanding for institutionalized solutions supported by the health care system.
Implications for Practice: The disparity between experience of care and attribution as best practice, which was detected regarding many elements of care and support, highlights areas of action affecting all domains of care and support involved. The discussion about new concepts and structures for health care in orphan diseases could draw upon these patient-oriented results a) regarding orphan-disease specific elements, which call for institutionalized reimbursement, b) elements that are essential for centre care and a corresponding network, and c) elements reflecting patients´ participation in the conception of centers for rare diseases.
References
- 1.
- Simoes E, Kronenthaler A, Emrich C, Rieger MA, Rall K, Schäffeler N, Hiltner H, Ueding E, Brucker SY. Development of a provisional model to improve transitional care for female adolescents with a rare genital malformation as an example for orphan diseases. BioMed Research International. 2014. DOI: 10.1155/2014/913842