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- Fair, Cynthia, et al.
(författare)
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International and Interdisciplinary Identification of Health Care Transition Outcomes
- 2016
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Ingår i: JAMA Pediatrics. - : American Medical Association (AMA). - 2168-6211 .- 2168-6203. ; 170:3, s. 11-205
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Tidskriftsartikel (refereegranskat)abstract
- IMPORTANCE: There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs.OBJECTIVE: To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants.DESIGN, SETTING, AND PARTICIPANTS: A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014.EXPOSURES: Health care transition outcomes of adolescents and young adults with special health care needs.MAIN OUTCOMES AND MEASURES: Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important).RESULTS: The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities.CONCLUSIONS AND RELEVANCE: Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.
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| 2. |
- Pedraza, Eddy Carolina, et al.
(författare)
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Palliative care services in paediatric oncology centres across Europe : A cross-sectional survey
- 2023
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Ingår i: EJC Paediatric Oncology. - 2772-610X. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: A total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n = 102, 64.6 %) reported offering specialised PPC (defined as 24/7 coverage services with a specialised physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n = 123, 80.9 %) and PC at home (n = 105, 69.1 %). In 38.7 % centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n = 126, 81.2 %). Few centres (n = 11, 7.1 %) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6 %) reported having bereavement services. Negative parental perception (n = 99, 64.7 %) and late referrals (n = 91, 59.5 %) were major barriers to implementation perceived by health care providers. Conclusion: Our results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for > 10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.
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