Development and Implementation of an Advanced Practitioner–Led Survivorship Clinic for Patients Status Post Allogeneic Transplant

Author(s):  
Linda K. Baer, MSN, APRN, AOCNP ◽  
Laura Brister, MSN, APRN, AOCNP ◽  
Susan R. Mazanec, PhD, RN, AOCN, FAAN

Background: Survivor recovery from hematopoietic cell transplantation (HCT) is long term, with significant physical and psychological morbidities that impact quality of life and reentry into personal and social lives. The optimal timing of when and how to deliver comprehensive HCT survivorship care is not well defined. Purpose: The purpose of this study was to design, implement, and evaluate an advanced practitioner (AP)-led pilot survivorship clinic incorporating an individual and group format for patients post HCT at the 1-year transition period. Methods: A survey assessing physical, social, emotional, and spiritual needs and concerns was mailed to a sample of patients who underwent HCT between 2009 and 2014. This phase 1 survey was utilized in the phase 2 design of an AP-led pilot survivorship clinic for patients post allogeneic HCT. A total of 15 patients were approached, out of which 7 enrolled over a 12-month period in the pilot survivorship clinic. Results: The needs assessment survey noted the most prevalent moderate to high concerns were in the emotional domain, with 52% of respondents identifying fear of cancer returning and new cancer developing. The pilot survivorship clinic incorporating a group visit format with multiple sessions was not feasible for both patients and APs within the context of a small- to medium-sized HCT program. Conclusion: The needs assessment survey underscored the importance of addressing all four quality of life domains in cancer survivors. A hybrid survivorship clinic with one comprehensive group visit may be beneficial for HCT survivors at the 1-year transition for small- to medium-sized HCT programs.

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.


2007 ◽  
Vol 14 (3) ◽  
pp. 301-305 ◽  
Author(s):  
Richard G. Lucas ◽  
Heather Jacene ◽  
Jay Harolds ◽  
Lynn Barnes ◽  
Alan Maurer

HEC Forum ◽  
2012 ◽  
Vol 25 (1) ◽  
pp. 61-78 ◽  
Author(s):  
Andrea Frolic ◽  
Sandra Andreychuk ◽  
Wendy Seidlitz ◽  
Angela Djuric-Paulin ◽  
Barb Flaherty ◽  
...  

2017 ◽  
Vol 4 (3) ◽  
pp. 257-263 ◽  
Author(s):  
Luke T. Lavallée ◽  
Ryan Fitzpatrick ◽  
Sonya Cnossen ◽  
Kelsey Witiuk ◽  
Lori Wood ◽  
...  

2019 ◽  
Vol 7 (2) ◽  
pp. 701-703.e2
Author(s):  
Elizabeth Lippner ◽  
Scott H. Sicherer ◽  
Michael H. Land ◽  
Michael Schatz ◽  
Chitra Dinakar

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