Literature DB >> 26335957

Tackling the increasing complexity of CF care.

Gregory S Sawicki1, Christopher H Goss2.   

Abstract

Health outcomes for individuals with cystic fibrosis (CF) have dramatically improved in parallel with better organization of clinical care systems, evolution of novel therapeutics, and improvements in diagnosis and screening for CF and CF-related complications. In parallel with these advances has come an increasing complexity and burden of care, leading to challenges with adherence to treatment regimens. As novel therapeutics continue to be developed and introduced to the CF care regimen, there are clear opportunities to refine and personalize care. This can be done by adding comparative effectiveness research to the CF clinical research paradigm and integrating novel technologies in drug delivery and remote monitoring that can facilitate adherence but also reduce the burden of treatment while maintaining efficacy. This review highlights both the challenges of the increasingly complex treatment regimens in CF and the opportunities to advance care by addressing adherence, implementation science, comparative effectiveness, and integration of novel technologies in CF care.
© 2015 Wiley Periodicals, Inc.

Entities:  

Keywords:  adherence; comparative effectiveness research; implementation research; treatment burden; treatment complexity

Mesh:

Substances:

Year:  2015        PMID: 26335957      PMCID: PMC4562023          DOI: 10.1002/ppul.23244

Source DB:  PubMed          Journal:  Pediatr Pulmonol        ISSN: 1099-0496


  60 in total

1.  Lung deposition of inhaled tobramycin with eFlow rapid/LC Plus jet nebuliser in healthy and cystic fibrosis subjects.

Authors:  Warren Lenney; Frank Edenborough; Pearl Kho; John M Kovarik
Journal:  J Cyst Fibros       Date:  2011-01       Impact factor: 5.482

2.  Evaluation of a home telemonitoring service for adult patients with cystic fibrosis: a pilot study.

Authors:  Gianluigi Grzincich; Rolando Gagliardini; Anna Bossi; Sergio Bella; Giuseppe Cimino; Natalia Cirilli; Laura Viviani; Eugenia Iacinti; Serena Quattrucci
Journal:  J Telemed Telecare       Date:  2010-07-19       Impact factor: 6.184

3.  Comparative effectiveness research: what happened to incorporating costs of care?

Authors:  Christopher H Goss
Journal:  Am J Respir Crit Care Med       Date:  2011-04-15       Impact factor: 21.405

4.  Opportunities for cystic fibrosis care teams to support treatment adherence.

Authors:  Kristin A Riekert; Michelle N Eakin; Andrew Bilderback; Alana K Ridge; Bruce C Marshall
Journal:  J Cyst Fibros       Date:  2014-10-24       Impact factor: 5.482

5.  The impact of transforming healthcare delivery on cystic fibrosis outcomes: a decade of quality improvement at Cincinnati Children's Hospital.

Authors:  Christopher M Siracusa; Jeanne L Weiland; James D Acton; Amitra K Chima; Barbara A Chini; Andrea J Hoberman; J Denise Wetzel; Raouf S Amin; Gary L McPhail
Journal:  BMJ Qual Saf       Date:  2014-04       Impact factor: 7.035

6.  Rationale and design of a randomized trial of home electronic symptom and lung function monitoring to detect cystic fibrosis pulmonary exacerbations: the early intervention in cystic fibrosis exacerbation (eICE) trial.

Authors:  N Lechtzin; N West; S Allgood; E Wilhelm; U Khan; N Mayer-Hamblett; M L Aitken; B W Ramsey; M P Boyle; P J Mogayzel; C H Goss
Journal:  Contemp Clin Trials       Date:  2013-09-19       Impact factor: 2.226

7.  Randomized trial of efficacy and safety of dornase alfa delivered by eRapid nebulizer in cystic fibrosis patients.

Authors:  Gregory S Sawicki; Will Chou; Karina Raimundo; Ben Trzaskoma; Michael W Konstan
Journal:  J Cyst Fibros       Date:  2015-04-25       Impact factor: 5.482

8.  Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry.

Authors:  Todd MacKenzie; Alex H Gifford; Kathryn A Sabadosa; Hebe B Quinton; Emily A Knapp; Christopher H Goss; Bruce C Marshall
Journal:  Ann Intern Med       Date:  2014-08-19       Impact factor: 25.391

9.  Managing treatment complexity in cystic fibrosis: challenges and opportunities.

Authors:  Gregory S Sawicki; Harm Tiddens
Journal:  Pediatr Pulmonol       Date:  2012-03-29

10.  Early anti-pseudomonal acquisition in young patients with cystic fibrosis: rationale and design of the EPIC clinical trial and observational study'.

Authors:  Miriam M Treggiari; Margaret Rosenfeld; Nicole Mayer-Hamblett; George Retsch-Bogart; Ronald L Gibson; Judy Williams; Julia Emerson; Richard A Kronmal; Bonnie W Ramsey
Journal:  Contemp Clin Trials       Date:  2009-01-15       Impact factor: 2.226

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  13 in total

1.  Identifying Factors that Facilitate Treatment Adherence in Cystic Fibrosis: Qualitative Analyses of Interviews with Parents and Adolescents.

Authors:  Christina J Nicolais; Ruth Bernstein; Estefany Saez-Flores; Katherine A McLean; Kristin A Riekert; Alexandra L Quittner
Journal:  J Clin Psychol Med Settings       Date:  2019-12

Review 2.  Use of FEV1 in cystic fibrosis epidemiologic studies and clinical trials: A statistical perspective for the clinical researcher.

Authors:  Rhonda Szczesniak; Sonya L Heltshe; Sanja Stanojevic; Nicole Mayer-Hamblett
Journal:  J Cyst Fibros       Date:  2017-01-20       Impact factor: 5.482

3.  Dynamics of Disease Progression and Gastrostomy Tube Placement in Children and Adolescents with Cystic Fibrosis: Application of Joint Models for Longitudinal and Time-to-Event Data.

Authors:  Rhonda Szczesniak; Weiji Su; J P Clancy
Journal:  Intern Med Rev (Wash D C)       Date:  2016-10

4.  Highlights from the 2015 North American Cystic Fibrosis Conference.

Authors:  Edith T Zemanick; Thida Ong; Cori L Daines; Elisabeth P Dellon; Marianne S Muhlebach; Charles R Esther
Journal:  Pediatr Pulmonol       Date:  2016-04-13

Review 5.  Cystic fibrosis lung environment and Pseudomonas aeruginosa infection.

Authors:  Anjali Y Bhagirath; Yanqi Li; Deepti Somayajula; Maryam Dadashi; Sara Badr; Kangmin Duan
Journal:  BMC Pulm Med       Date:  2016-12-05       Impact factor: 3.317

6.  Validation of a Cystic Fibrosis Medication Knowledge Questionnaire.

Authors:  Beverly FitzPatrick; John Hawboldt; Mary Jane Smith; Tiffany Lee
Journal:  Glob Pediatr Health       Date:  2017-07-18

7.  The Use of Home Spirometry in Pediatric Cystic Fibrosis Patients: Results of a Feasibility Study.

Authors:  Aarti Shakkottai; Samya Z Nasr
Journal:  Glob Pediatr Health       Date:  2017-02-02

8.  Data driven decision making to characterize clinical personas of parents of children with cystic fibrosis: a mixed methods study.

Authors:  Rhonda D Szczesniak; Teresa Pestian; Leo L Duan; Dan Li; Sophia Stamper; Brycen Ferrara; Elizabeth Kramer; John P Clancy; Daniel Grossoehme
Journal:  BMC Pulm Med       Date:  2020-06-18       Impact factor: 3.317

9.  Accurate reporting of adherence to inhaled therapies in adults with cystic fibrosis: methods to calculate "normative adherence".

Authors:  Zhe Hui Hoo; Rachael Curley; Michael J Campbell; Stephen J Walters; Daniel Hind; Martin J Wildman
Journal:  Patient Prefer Adherence       Date:  2016-05-23       Impact factor: 2.711

10.  Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.

Authors:  K B Knudsen; T Pressler; L H Mortensen; M Jarden; M Skov; A L Quittner; T Katzenstein; K A Boisen
Journal:  Springerplus       Date:  2016-07-29
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