Browsing by Subject "Patient care"

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    Open Access
    Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective
    (2022-04-18) Pignolo, Robert J; Bedford-Gay, Christopher; Cali, Amanda; Davis, Michelle; Delai, Patricia L R; Gonzales, Kristi; Hixson, Candace; Kent, Alastair; Newport, Hope; Robert, Manuel; Scott, Christiaan; Kaplan, Frederick S
    Background Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, disabling genetic disorder characterized by congenital malformations of the great toes and progressive heterotopic ossification of soft and connective tissues. Assiduous attention to the unmet needs of this patient community is crucial to prevent potential iatrogenic harm and optimize care for individuals with FOP. Objective To gather international expert opinion and real-world experience on the key challenges for individuals with FOP and their families, highlight critical gaps in care, communication, and research, and provide recommendations for improvement. Methods An international group of expert clinicians, patients and patient advocates, caregivers and representatives from the international FOP community participated in a virtual, half-day meeting on 22 March 2021 to discuss the key unmet needs of individuals with FOP. Results Individuals with FOP often face the frustration of long diagnostic journeys, the burden of self-advocacy and the navigation of novel care pathways. Globally, patients with FOP are also confronted with inequities in access to diagnosis and specialist care, and consequently, unequal access to registries, clinical trials, and essential support from patient associations. Organizations such as the International FOP Association, the International Clinical Council on FOP, and national FOP organizations work to provide information, facilitate access to expert clinical guidance, nurture patient empowerment, fund FOP research and/or foster meaningful collaborations with the research community. The non-profit Tin Soldiers Global FOP Patient Search program aims to identify and provide a pathway to diagnosis and care for individuals with FOP, particularly in underserved communities. Such global initiatives and the increasingly widespread use of telemedicine and digital platforms offer opportunities to improve vital access to care and research. Conclusions This multi-stakeholder perspective highlights some of the unmet needs of individuals with FOP and their families. Regional and international organizations play an important role in improving the quality of life of those they reach in the global FOP community. However, globally, fundamental issues remain around raising awareness of FOP among healthcare professionals, identifying individuals with FOP, reducing time to diagnosis, and ensuring access to best practice in care, support, and clinical research. Medical writing support was industry-sponsored.
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    Open Access
    Language as a barrier to care for Xhosa-speaking patients at a South Africanpaediatric teaching hospital
    (2006) Levin, M E
    Background. Disease is closely linked to the social context in which we live. Difficulty with communication, cultural incompatibility between patients and health care providers and socioeconomic obstacles are important barriers to quality care when doctors and patients come from different backgrounds and speak different languages. Red Cross War Memorial Children’s Hospital (RCH) is a paediatric teaching hospital in Cape Town where staff members communicate mainly in English or Afrikaans, while many patients speak Xhosa as their first language. Objectives. The study aimed to identify barriers to optimal care for Xhosa-speaking parents of patients at RCH. The contribution of language difficulties was assessed as a possible barrier to health care for this group. Design. A questionnaire was developed and administered to 53 Xhosa-speaking parents of children admitted to the shortstay ward at RCH. The questionnaire examined parents’ perceptions of barriers to their children’s care, using openended questions, closed-ended questions and selection from lists. Results. Parents experienced significant structural and socioeconomic barriers to access of health care for their children. Language and cultural barriers were cited by more parents as a major barrier to health care than structural and socioeconomic barriers. Parents did not have access to same language practitioners, as only 6% of medical interviews were conducted partly or wholly in the patient’s home language. Of the 94% of interviews where no Xhosa was spoken by medical staff, 21% were conducted with the aid of an interpreter (formal or ad hoc) and in 79% no interpreter was used. Parents experienced difficulties with understanding the doctors (64%), making themselves understood (54%) and asking questions (38%). Sixty-nine per cent of parents were dissatisfied with communication between themselves and their doctors and 45% were concerned about negative effects of poor communication on them or their children. Parents tended to blame their own linguistic limitation rather than those of the doctors.