Information ranks highest: Expectations of female adolescents with a rare genital malformation towards health care services

Abstract

BackgroundAccess to highly specialized health care services and support to meet the patient’s specific needs is 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. This study is part of the BMBF funded TransCareO project examining in a mixed-method design health care provisional deficits, preferences, and barriers in health care access as perceived by female adolescents affected by the Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS), a rare (orphan) genital malformation.MethodsPrior to a communicative validation workshop, critical elements of MRKHS related care and support (items) were identified in interviews with MRKHS patients. During the subsequent workshop, 87 persons involved in health care and support for MRKHS were asked to rate the items using a 7-point Likert scale (7, strongly agree; 1, strongly disagree) as to 1) the elements’ potential importance (i.e., health care expected to be “best practice”, or priority) and 2) the presently experienced care. A gap score between the two was computed highlighting fields of action. Items were arranged into ten separate questionnaires representing domains of care and support (e.g., online-portal, patient participation). Within each domain, several items addressed various aspects of “information” and “access”. Here, we present the outcome of items’ evaluation by patients (attended, NPAT = 35; respondents, NRESP = 19).ResultsHighest priority scores occurred for domains “Online-Portal”, “Patient participation”, and “Tailored informational offers”, characterizing them as extremely important for the perception as best practice. Highest gap scores yielded domains “Tailored informational offers”, reflecting perceived lack of disease-related information for affected persons, medical experts, and health insurance companies, “Online-Portal” (with limited information available on specialist clinics and specialized doctors), and regarding insufficient support offers (e.g., in school and occupational settings). Conversely, lowest gap scores were found with group offers for MRKHS patients (“Transition programs”) and MRKHS self-help days (“Patient participation”), suggesting satisfaction or good solutions in place.DiscussionThe importance assigned to disease-related information indicates that informational deficits are perceived by patients as barriers, hindering 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 sol...

Lifespan healthcare transitions among individuals with intersex traits in Canada: a mixed-methods and qualitative study

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Challenges and Opportunities in Adolescent Gynecology Patients with Surgically-Treated Congenital and Acquired Anomalies: Transition of Care from Pediatric to Adult Surgery

“…Simoes et al reported data from a German-funded Trans-CareO project that examined in a mixed method design health care provisional deficits, preferences, and barriers in health care access as perceived by female adolescents affected by MRKH. 20 To our knowledge, this is the first study to provide a comprehensive assessment of the provisional situation and in addition provide a full examination of the sociocultural findings, values, beliefs and attitudes, and competing demands that influence adolescents with MRKH in transition. In their initial interviews with MRKH patients they identified critical elements of MRKH-related care and then completed in a communicative validation workshop with MRKH patients ages 10-19 years at time of their diagnosis.…”

“…Because information ranks among the highest concerns from this research and access to knowledgeable clinicians might require long distance travel, the adolescents experiencing this barrier suggest use of e-health facilities. 20…”

Rare genital malformations in women’s health research: sociodemographic, regional, and disease-related characteristics of patients with Mayer-Rokitansky-Küster-Hauser syndrome

“…In order to improve health care of patients with rare genital malformations (and specifically, MRKHS), the present work was carried out within the larger Trans-CareO project using a mixed-method design. Earlier findings revealed a high previously unknown need for information on disease and specialized health care in affected women [52]. For the first time in the international research context, the present work analyzed sociodemographic data in relation to the educational and the partnership status of the patients with MRKHS, targeting the psychosocial burden of disease.…”

“…On average, patients preferred to have the invasive procedure in their 20th year of age, and thus usually after completing school education, on the transition to a new stage of life. During interviews with affected women in the context of the health care research project TransCareO, it became clear that this time period was often chosen intentionally for operative therapy in order to attract as little attention as possible and to avoid questions [43,44,52]. This would be a possible explanation for the timing of the surgical treatment, which is ultimately determined by many patients themselves after detailed consultation.…”